Anything But Ordinary...

Gone but never forgotten

2011-11-03T08:45:00.000-07:00

This is Rachys mum, my beautiful daughter passed away at 20.45 on wednesday 26th october 2011, she was so brave as she knew time was running out, she had everything planned and worried about everyone else especially me other than herself, she was so brave and a selfless person. I know she helped a lot of you with lung disease and for that we are very proud parents. I just want to say a massive thanks to you all for all your support and kind messages. Also to the lovely Holly Shaw for being there for her and visiting her right upto the end, as i know it was hard for u at times to slowly see her dieing. ( A true friend), she loved the hand massages you used to give her. Also lovely Katie Mason (another true friend) for coming all the way from London to see her bessie i know it was difficult for you but we are very greatful as it made her so happy when she saw you in her last days. Both Holly and Katie dressed her room up to make it homely, she loved it. She was a true fighter and fought to the end, we will dearly miss her, she as left a massive hole in our hearts that will never be filled, she was my best friend and i was her rock as she would often tell me, we were inseparable. Love her so much. R.I.P. My beautiful angel. Xxxxxxxxxx
Her funeral takes place on friday 4th november at 1.15

Thank you

2011-10-09T15:00:00.000-07:00


Click for full size

Rachael Wakefield, a life lived surrounded by love, with my second chance of life time is now precious, I'd like to thank all and everyone for your continued support, love to you all xxx Rachy xxx

(Posted by Pete on behalf of Rachy)

2011-09-14T12:39:00.000-07:00

Hello everyone, Holly here again. Rachy has asked me to update you all on how she is doing.

Rachy continues to be poorly but she is stable. She has decided to discontinue the bi-pap as it was too uncomfortable for her. Rachy is now on a pain patch to keep her pain under control and this seems to be working ok at the minute.

I visited Rachy tonight and after a nice hand massage (from yours truly) she looked at her facebook wall on my phone. She thanks you all for the lovely messages you have been sending her; they mean a lot to both her and her family.

Will try and update again soon when I can,

Love Holly x

2011-08-28T11:32:00.000-07:00

Hi it's Holly here, I have been to visit Rachy tonight and she's kindly asked me to update you guys via her blog.
She is poorly but stable at the minute - she is on Bi-Pap (non-invasive ventilator) 24hours a day. Doctors are currently working and focusing on pain management above everything else at the moment.

Although low in spirits she still had that beautiful smile on her face :) We even managed a little giggle about Rachy "passing wind". Due to the Bi-Pap pushing air into her lungs, some still manages to pass into her stomach, leaving her bloated and uncomfortable. Whilst I was there the nurse released the wind through a syringe (via her PEG), and we were giggling about her passing wind in a very lady like manner.

She appreciates all the messages, support and love that has been shown to her at this difficult time.

I will be sure to update you when I can, I am hoping to visit again on Wednesday evening.

Love you always Rachy.

Holly x

2011-08-15T06:04:00.000-07:00

So here's a little update as much as I understand anyway. We we're struggling with pain control in my last blog. In my opinion we still are. I ended up having to go back into hospital for 10 days, where if I'm honest, apart from straightening a few things out, we weren't able to achieve very much. My needs were assessed which was helpful, I'm now suffering from bed sores which are healing well thanks to good nutrition, extra antibiotics, barrier cream and from being on the airflow mattress are healing well. But chest pain, investigation and relief of it is still an issue. I'm on slow release morphine and short acting morphine. What you want is to be on the lowest dose slow release morphine and need little or no short acting morphine. I'm still needing quite alot of short acting morphine so we're not quite there yet. I hate oramorph (short acting morphine) it makes me feel refluxy, sickly, drowsy and tired so I hate feeling like that so I hate having to take it. The side affects scare me, taking morphine scares me.
I also take IV Paracetamol. Paracetamol works amazingly well IV with hardly any side affects I prefer to use it but alone unfortunately it's not enough to control my pain.
At the moment my body and lungs just seem so unpredictable and it scares me. My own body scares me... I had another 'turn' on my first night at home, again I was doing nebulisers and it just felt like the 'space' in the room disappeared. I cried. Alot. I cried for me, I cried for mum, I cried for dad, I cried because I'm scared. And that's it, I'm scared. I'm scared the right people don't know I'm scared or even what I'm scared of. This is where I'm at now and this is the best things are going to get. That alone makes me want to cry. Mum is now carrying a bell system round her neck, that's how scared I am. Being alone scares me.
I didn't want this blog to be a negative one and refuse to end it on a negative note. I'm home now and getting back into a good routine which when you have a treatment regime like mine has got to be a good thing!

That's life

2011-08-12T12:30:00.001-07:00

Sometimes I need this space to say things, to just say them, to who I don't care, I don't really care who's reading this blog and who gives a damn. It's my life and I'm going to live it the best way I know how because I can. And now at this moment in time I feel the need to say whats on my mind so I'm going to. I'm sick of the judgement and hate the mind games, if you think you can live my life any better than me then I'd love to see you try. The last few weeks have been tough to say the least. I can't wait for this month to be over and it's only mid month. I dunno I just don't feel like life is enough at the moment. Like life itself is not enough to keep me alive and that's a scary thought. Every day I wake up and I'm one day closer to dying. But isn't everybody? Of course they are! Because that's life and it's beautiful and magic and tragic and that's why I love it...
Health update to follow sometime in the week

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Quick update

2011-07-24T12:49:00.001-07:00

So I'm working on a longer, more indepth blog for on here but for now I thought I'd just post a little update. I've been out of hospital about 2wks now, good going for me. It hasn't been without it's troubles though. We're working on my pain management at the moment, I've been in alot of pain. I don't like talking about pain it's so exhausting and disabling. When I came out of hospital previously we would go on shopping trips to cheer me up. I can't even imagine doing that now. When your in pain everything takes that bit longer. Everything takes me that bit longer anyway because I'm out of breath! The pain has been creeping up on me slowly, I didn't think much of it, I was just having a bit of extra oramorph here and there so it's so devastating to have pain that we're now struggling to control. Except for the recovery period post transplant and even pre transplant I never had any trouble with pain. I'm reasurred by my hospice doctor and my mcmillan nurse though that I'm on teen tiny doses of everything, there's plenty of scope to go up on doseages and even a possibilty of admission to the hospice for symptom management to allow us to get this right. I'm not worried the pain has already started to improve so we know I'm on the right drugs it's just about getting the dose right.
I think I'm going to leave it there, keep your eyes peeled for a blog facelift!

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Weekend

2011-07-04T05:23:00.001-07:00

So I guess you could say my blogs turn up like buses.
Anyway another weekend in Wakefield world of course it can't be straight forward.
As usual if I'd have gone with my gut instinct earlier in the week or should I say mum's gut instinct I might not be typing this now. All week I've said to mum "something is wrong, I can't pin point it, it's nothing in particular its just something!" My nausea doesn't just flare for no reason usually, but it's the first thing that does when something is wrong. Mum's offered to call the ward on more than one occasion and I've said no because it's nothing in particular. My nausea has been so bad tolerating even water has been difficult, I was cold yet my cheeks were flushed with no temperature, I was generally weak and exhausted. People were having conversations with me and my eyes were just closing from exhaustion. I've been naughty really because I have been pretty unwell but I was enjoying being at home so much and I was being closely monitored. We can't do our own bloods weren't to know anything was wrong.
Anyway my swelling in my ankles, both of them, has been bad, along with swelling in my knees and face, basically my weight was up and I was carrying alot of extra fluid. Mum phoned transplant outpatients to see if I could be seen in Tuesday morning clinic. The clinic was already over booked and it wasn't possible but my doctor wanted me to go to A&E and have a doppler scan. As soon as mum got off the phone and explained the situation I flipped. There wasn't a chance I was spending the day in A&E for a doppler to rule out a blood clot, on which part of my body I wasn't sure because I was swollen from fluid all over! I'm not saying for a second I know better than a doctor but I do know my own body and I knew I didn't have a blood clot. Nope, I had other plans that day, I went out and got my hair done and it did me the world of good :-)

As mentioned in my previous blog I went to the hospice on Friday. On Saturday I was asked to go to the ward to have blood taken. So we slowly got me ready on Saturday and made our way to the ward, I had my bloods drawn from my port and we left again. On Saturday afternoon we got a call from the ward sister, she'd spoken to the on call doctor I needed to go back to the ward for an IV Magnesium infusion. Gutted, I instructed mum to grab a few things and we left after my district nurse had changed my Nozinan infusion. I knew the IV Magnesium infusion wouldn't just be two hours long, I knew I'd be staying in so we packed some Pjs too. Sure enough I stayed and that's where things are upto at the moment. I was very dehydrated on admission and I'm still on IV fluids now but my magnesium was corrected with the infusion and I'm hoping to get home today, provided my potassium (for those that are interested it dropped to 2.4, new record for me) has picked up also, Fingers crossed.

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Location:Wythenshawe Hospital, Southmoor Road, Manchester

One of two and saying thankyou!

2011-07-04T05:07:00.001-07:00

Phew where to start? I can't believe its been a month since I last blogged! I was so relieved to get the last blog out of my system I was so sure I'd be doing it again soon but I guess things didn't work out that way. I've been home again now two weeks. A good time span for me! I think I've achieved what I wanted to in the last two weeks, national transplant week kicks off on Monday July 4th and I wanted to say thankyou. Thankyou to my brave donor family, my inspirational donor, hard working medical team, selfless parents, family and friends and of course to you, the public, I'll probably never meet you in 'real life' but without you I wouldn't be able to get through my transplant journey and everything life throws at me. So to the public I made this appearance on ITV Granada this week (Click here to view it). Following that appearance I received these:

The support and kindness of strangers really is overwhelming.

Health wise things have been tough especially during this past week. Last Friday (24th and notice its weekend again) I managed to drop my Nozinan pump on the floor in the bathroom and crack my syringe on the tiles. Gutted, I pulled the syringe off and called the district nurses. They were extremely busy and weren't able to get out to me for a further 5hrs. Since then my nausea has not been well controlled at all, I started IV Cylizine on Tuesday 28th which has at least helped me keep my tablets down which is the most important thing.
On Friday 1st my Nozinan pump was increased, I'm now on the maximum dose and thankfully it seems to have started to kick in. Last night and today I've had cravings for food which I haven't had all week so it looks like a start. This week I've been fully dependent on my peg, tube feeding just to keep me going. I also started with some pain this week, well I say this week, it's been slowly building up for a while and I just haven't done anything about it. But recently its become more troublesome to the point where once my sleeping tablet has worn off (around 4hrs) I can't sleep, even after oramorph. I mentioned it to my GP when I saw her at the start of the week and she decided MST (slow release morphine) would work best. And it has worked pretty well, the 'spikes' of pain I was getting are not as bad. The under lying level though I think may need some work as I'm still not sleeping.
On Wednesday (22nd) a nurse from the palliative care team came out to relieve mum for a few hours, I got scrabble all set up on the table and when she turned up I was just to exhausted to move. I slept on the sofa whilst she did sudoku, I felt so ignorant but I just couldn't keep my eyes open. On Thursday (23rd) clinic was long, my water tablets were upped again as my fluid retention has been terrible. Upping my water tablets has in turn dropped my potassium, another rant for another day (to follow in next blog!) My Mcmillan nurse dropped in for a visit after clinic. I like seeing P she's so proactive with management and treatment, if something can be done for a symptom she'll do it. She has confidence (along with experience) something alot of doctors when prescribing new medications for symptom control don't. She suggested increasing my Nozinan to the maximum dose to see me through this rough patch and increasing my oramorph, both of which we did and things have picked up.
On Friday after a long and complicated week I was desperate to get to the hospice and chill whilst having some reflexology. At the moment I have very dry skin at the base of my spine and not much 'padding' around my tail bone anymore, its about to break out into a sore. I just couldn't get comfortable on the reflexology couch so it took 3 staff to get me comfy in a chair in the dayroom. I love the hospice, they're so accommodating and nothing is ever too much work.
Saturday, well I'll talk about Saturday in my next blog.

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Post transplant life

2011-05-30T00:06:00.000-07:00

It is of course bank holiday weekend and so obviously I have too much time on my hands!
I wanted to talk about post transplant life and I guess the necessities of it.
I'm going to start by saying it is NOT easy. It's harder than I ever imagined it to be and I think than I was even prepared for. To be honest nothing, no book or leaflet could have ever prepared me for post transplant recovery and life. I've been asked if I'd like to give talks on my experience and recovery, I don't think I could, nothing I could ever say would prepare someone for the recovery I had. Having said that my recovery from the procedure was not exactly straight forward, everyone's experience is different. Alot of what the recovery depends on is physical, mental and nutritional well being at the time. Physically having muscle and energy is so important, at the time when I went into transplant I was dependent on a non-invasive ventilator, I was able to do very little exercise wise, though that didn't stop me trying to do yoga on the Wii! But my muscles generally were very deconditioned and my respiratory muscles were unable to support me and my breathing post transplant, as a result I needed an extended stay in the ICU whilst I recovered on the ventilator with a tracheostomy.
Mentally I wasn't in a good place, facing imminent death at 22 does that to you. I was getting no extra help or support mental health wise and I think I'd have benefited from that.
Nutritionally I was able to eat very little and lost exactly half my body weight in the run up to transplant, food seemed to bloat me up and made it feel impossible to breathe. I was prescribed yucky milkshake meal replacements but they made no difference, I just had no interest in food itself or even trying to maintain good nutritional status, it just didn't rank high on my list of worries. Then trying to eat a full meal when it seemed so alien to me post transplant was hard, I was supported via tube feeds and still am today.
Anyway recovery is on going and the first year out of transplant is the most difficult. I wondered if I'd ever actually get stable and well again. Now things are more controlled, we have plans in place should things go wrong anyway, that's more than we had last year. Not only that but I now have confidence in myself, I know my post transplant body very well, I'm learning all the time what's normal and what isn't. Post transplant I explained (not easy with a trachy!) that my right lung didn't feel right, it felt 'heavy' my doctors were puzzled and did a bronchoscopy to see if there was anything there. My right airway had narrowed to the size of a pin head and I needed to go to theatre eventually to have it widened. Last year when my lung collapsed, I was in clinic once a week almost 'moaning' things weren't right yet my chest xrays were unchanged. Eventually I was given a CT scan and there it was, my right lung had collapsed, I ended up with a chest drain for 6wks and eventually the lung had to be 'glued' back up. I can predict a spike in my infection levels before its even visible on blood tests. Doctors actually ask me "Rachael is your CRP up?" and I can answer before the blood results are even in and I've not yet got it wrong.
Post transplant life generally revolves around three things, treatment, support and getting out and having the confidence to live it. Treatment I've already touched on recently, my treatment and drugs are increasing all the time. Before my transplant there was nothing I could do to help myself except for what I've mentioned above but I mean drug wise. There was nothing I could take to relieve or help my symptoms apart from what I call 'the dying drugs' like oramorph and diazepam which were there to make life easier rather than treat my rare lung illness. Now post transplant there seems to be a drug for everything, I guess it shows how much time and effort has been put into post transplant medicine which is improving all the time. Pre transplant nobody understood my lungs or lung disease so there was nothing they could do about it, we had to sit back and watch it slowly take my life. Now I have an extensive drug list and it requires a very strict routine to get it all taken and done on time. But it is something I can do for myself to keep myself well, I've never had to work so hard in my life to actually stay alive but it makes me feel like I'm in control of my situation. I could sit back and say "I'm not taking that or this, I don't see the point it doesn't make me well". But I don't, I choose not to. Myself and mum work extremely hard to maintain a good regime, I may not be 100% on time with every medication and every nebuliser but I don't ever miss a drug. And the support I have from mum to unable me to do that is vital.
As is the support from my friends. Without them, well I guess life would just be boring? They're there for me and keep me going when things are tough. Some days when I really don't feel like smiling a flying visit from a friend is the pick up I need. I know my friends have their own lives and can't be here as often as they'd like but when I do see them it then makes the catch up even better! I got a visit from a close Internet friend recently, we met online some 4yrs ago and she's been a constant support to me since, right now and she's on a tour of the UK and she dropped in with her 'mom' to see me. I think my smile in this picture says it all :)
And finally the confidence to get out and live life. I have my limitations again, I'm on a stupid amount of oxygen and my breathlessness is at times worse than before my transplant. I have to plan my 'moves' carefully in my head like playing a boardgame. "Next move sofa to stairlift, rest, next move stairlift to bathroom". That really is how limited I am, I couldn't sit on the sofa and just get up and do something, say for example the doorbell rang, I'd need to swap my oxygen over to a higher % mask, take some deep breaths and then get up and pace myself to the door, I can't take more than 15 steps in one go, that I already know from advanced planning! Some days I have to dig so deep to find the trust and confidence in myself to even make my 'moves' but I find it, I have to because living in my bedroom 24hrs a day would ruin me mentally. I think that's all I have to say on post transplant life. Hope you enjoyed my rant!

2011-05-28T10:19:00.000-07:00

What a week! I'm going to start with at Tuesday May 17th, the day wasn't really significant itself, that evening I received a message off friend we'd met through our transplants some 10mths ago now. She was 22 and we were in hospital together when she got her much needed heart transplant. She sent me a message saying she wasn't well and was at clinic the following day for a biopsy. We exchanged a few messages and I was shocked she hadn't gone to clinic or even A&E if she felt as unwell as she said she did. I suggested maybe she should and she said she wouldn't know where to start and she'd be ok to wait for clinic where they knew her. And so I wished her well and that was that. The following evening I left a message asking how her biopsy had gone and was planning to pop up and see her if she was in hospital, I had a feeling she would be as she really didn't sound too good. A couple of hours later I got a message off her sister she wasn't well enough for the biopsy, was taken upto the ICU and passed away suddenly just hours later. I was shocked to the core and burst into tears. What if I was the last person she spoke to? Should I have pushed her more into getting help sooner? A million and one questions now I could ask but I know I'll not get the answers to them. For now I'm not going to say anymore on this just may she rest in peace xxx
The following day was Thursday, Thursdays are of course clinic days. Clinic was not a nice place to be in that day, my friend's death the previous day had clearly left its mark and shaken up everyone involved. Anyway this particular Thursday I was double booked, clinic and maxillofacial (dentist, I have a nasty broken tooth, my normal dentist will not come anywhere near me!) So it was just crazy. I got checked in at 9am, got my bloods done and my port needle changed, then dashed off to maxfax and saw the dentist and tried to hurry them along so we could get back to transplant clinic in time to see my consultant before lunch. Mum then had to leave me in reception, I threw my tablets down whilst she went to pharmacy and to the ward to get IV supplies. By this time it was 1.30pm and we were just leaving. We stopped off to pick up some lunch and then left for home just in time for my IVs and the district nurses turning up to change my Nozinan syringe. By the time my IVs had gone through I was shattered and it was around 4pm I had a nap and before I knew it it was 5.30pm, mum had nipped out to pick dad up from work. She leaves me for 15 minutes twice a day to fetch dad to and from work. After having such a mad clinic I realised I'd forgotten something, I hadn't had a chance to have any of my nebulisers all day. I do have a portable nebuliser but we left it in the car during clinic and I just didn't even think about it. I could feel my lungs getting tighter and tighter the space to breathe just felt smaller and smaller. I used to have wheezy type, asthmay attacks before my transplant, this didn't feel like that. It didn't feel like airway closure just restriction the only thing I could think to do was nebulise, I started setting up my neb, trying not to panic, of course nothing was to hand and I struggled to rip open the nebulisers. By this time I was gasping, I'm still learning and getting to know my post transplant lungs and just didn't know what to do. Thankfully the nebuliser kicked in with a good affect within a few minutes I felt almost back to normal but whatever it was it was a very nasty episode and left me in tears and exhausted. I just went and flopped on my bed. Just... No words.
Next day (Friday) I had an appointment at the hospice for some reflexology, finally a treat and a chance to relax after the previous day I'd had it was just what I needed. I hadn't relaxed that much since well before my transplant, it was just amazing. Afterwards we decided to go out for lunch, I wasn't feeling 100% though, I was getting random shivers. By the time lunch came I just couldn't eat it I was forcing it down myself. I couldn't think straight, I had goosebumps from the shivers I was getting and just felt outside myself. We asked for a 'doggy bag' and paid the bill and left. When we got home mum phoned the transplant unit for advice, the doctors advised we went to A&E but did mention my consultant was on call in the morning and I could 'drop in' for the ward round if I wanted to see him. I hate going to A&E, transplant is such a specialised field, my case is already complicated as it is, I'd freak most A&E doctors out with my medication list alone. So I decided to have some oramorph and just sleep on it. I felt better after my nap and decided to wait to see my consultant in the morning. We arrived on the ward for 9am and had a chat with my consultant, he decided I needed extra antibiotics, my heartrate was high, my blood pressure was high, I was shivery and my lungs were crackling I just generally wasn't well. So I was shown to the 4 bedded bay and that's where I've spent the past week.
Generally its been a bit of a crappy week. I been through every possible emotion following my friend's death and its been hard to focus on just getting well but a reassuring chat with the lovely Holly has put my mind a rest and I know now I did my best and I couldn't have changed what happened. Health wise I'm going to be here sometime whilst the team figure out exactly whats going on and this blood pressure and heart rate trouble which seems pretty persistent and annoying now. They are as usual pulling out all the stops to get things sorted and I have to say I couldn't feel more safe. They are experts and don't miss a trick. For now I think I'll leave it there!

boing...

2011-05-17T03:26:00.000-07:00

After a fairly productive and stable week (have a look at the LLTGL Ambassador's blog I wrote last week by clicking here, my call in my own words) last week of course I couldn't have a straight forward weekend, they just aren't my thing anymore!
On Thursday morning I was woken at 6.30am with stabbing chest pain. I sat bolt upright and tried to work out what was going on. It felt like heartburn but far worse, I quickly reached down and turned off my PEG feed and text mum to come in and help me. I didn't know where to put myself, no position was easing it, I sent mum downstairs for Gaviscon incase it was 'just' heartburn whilst I started taking painkillers, oramorph and co-codamol. I was doubled over in tears by this point and we just didn't know what to do. I was so scared it was something heart related, my grandad has recently passed away from a heart attack, he thought he was having heart burn and left it 12hrs before getting help. After half an hour things had eased a bit, Thursdays are clinic days, my hospital are cardiac experts so I decided I wanted to wait it out until clinic at 9am. I really wasn't very well and don't quite know how I made the journey but I did. As soon as we got to reception we told them I was having chest pain and I was seen by a nurse and doctor straight away. They checked my obs, my heart rate and blood pressure were raised but that's normal for me right now. I also had an ECG which thankfully looked ok. I was told I was going to be admitted though so things could be monitored, I agreed, after how I felt earlier in the morning I was almost relieved! I was sent for a chest xray then sent straight upto the ward. I got onto the bed and just slept, I was so exhausted.
On Friday I was seen on the ward round and had a chat with my consultant, he said he felt it wasn't anything cardiac related despite my blood pressure and heart rate still being abnormally high and what I had experienced was an esophageal spasm from acid reflux from my PEG feed, basically heart burn had caused my esophagus to go into spasm. It's said to be a very painful condition and can be likened to that of a heart attack. He reviewed my reflux treatment, very important as I have a hiatus hernia too and also prescribed Gaviscon for after every meal and pre and post feed. I agreed seen as my blood pressure was still very high and they had been playing around with my cardiac medications to stay and be monitored for the day and go home Saturday. And that's exactly what I did! So I'm home again and looking forward to a slightly more organised week. On the subject of being organised, we saw my GP yesterday to sort through my medication. I'm going to leave you with a pic of what I take on a 'normal' day. Enjoy!

One days worth of medications, this doesn't include my IVs of which I have 7 (!) a day, my continuous Nozinan infusion and any other painkillers or antisickness medications I may need.Breakfast!

Quick admission

2011-05-06T13:38:00.000-07:00

The Royal Wedding bank holiday weekend, a bright, sunny and beautiful event that got everyone in a good mood, shame the same couldn't be said for my little puffers. May 29th saw me struggling to move and after snoozing on the sofa all day I had mum call the ward for advice. They didn't really have any suggestions other than go in and get checked over because the previous day I'd had clinic and my IV antibiotics had been changed. So I agreed, I was fit for nothing at home anyway. I went in that night and had the usual checks, xray and bloods and after an extra shot of steroids managed to get some sleep.
For the last couple of weeks now in clinic, it was actually spotted in A&E when I went in with my port blockage it was noticed that my heartrate and diastolic blood pressure we're raised. I had had a chat to my doctor about it in clinic and we decided to up my diltiazem (calcium channel blocker) a drug used to bring down blood pressure as I was only on a small dose. When I was admitted to the ward my heart rate was around 140bpm the typical healthy resting heart rate in a healthy adult is 60-80bpm. Now I'm not your average healthy adult but having a heart rate that high does not feel nice. And my diastolic blood pressure was also raised, all in all my heart was working hard. I saw the doctors properly on the Sunday and they were pretty concerned and eager to get on top of this and so they began to play around with my drugs. That Tuesday it was agreed that I did have some Pulmonary Hypertension (PH) now, my heart is struggling under the pressure from my lungs. My heart has done so well to get me as far as it has and come through what it has, its unsurprising it's now struggling. I've been started on a couple of drugs, Ivabradine, used to bring down heart rate and yes as you can see from the picture a small dose of Viagra also known as Sildenafil.This drug works by relaxing the arteries thus reducing the work load for the right ventricle in the heart. It's going to be a case of fine tuning drugs now but PH is manageable and their are alot of treatment options available.
Anything but ordinary!

long catch up! with pics!

2011-04-21T08:13:00.000-07:00

Edit: So this post looks ok on Facebook but for those that didn't know every highlighted word has a link or picture attached to it :-)
So I'll start my catch up with lunch with Holly. Every get together from holidays to lunch I think we have ever arranged has fallen through because I've not been well enough. Well on April 8th I was well enough and we met, mums and all at TGI Friday's. A place I've been to before and knew Holly would love. We had a lovely lunch and the food didn't disappoint :) I gave Holly a little gift I'd bought a while back on the late Jessica Wales' birthday. TMD had a significant meaning to Holly and Jessica, Holly has TMD tattooed on her foot and I think it was also played at Jess's funeral. How strange it was that I just happened to see the gift on Jessica's birthday, I knew I had to get it and knew instantly who to give it too, I almost felt like Jess was trying to tell me something!

Myself and Holly at TGI Friday's
Next I was at the Newstart gathering. That was on April 10th it was the Newstart 'Christmas' party, held on a warm sunny day at the marriott hotel just beside the airport. It was so nice to be able to go, my first get together since being home with my fellow transplant patients that are now friends. We all sat around large tables and just chatted, there was around 150 people (patients and relatives) there and apart from myself a couple of people in wheelchairs and also another on oxygen you would just never know what some of us in the room had been through to get where we are today, to be alive and well. One guy on our table was 20yrs post heart transplant, just amazing! I got a picture with my special man :) and collected my transplant lapel, a small pin with the Newstart logo in gold and silver awarded exclusively to recipients with pride. I felt proud to be alive and a recipient that day.My transplant lapel
On April 15th my brave and foolish (!) little (17yrs old) cousin brought the newest addition to our family into the world. Bailey (how beautiful is that name?) was born after an overnight labour weighing 6lb 13oz. I'm very close to my cousins, I think because my mum is so close to her brothers and sisters and I'm an only child. So when we heard he had arrived I nagged mum to take me out so we could spoil him :) I sent a photocard to my 36yr old auntie congratulating her on becoming a nanna and one to my nanna to congratulate her on becoming a great nanna. My auntie is the youngest in her line of brothers and sisters and so her becoming the youngest nanna is an oddity! But there you go 'anything but ordinary!'Bailey
It leaves me feeling somewhat out of place, I'm the eldest female of the next generation in the family and I feel like I should be the first or one of the first having the children, not my younger cousins. But then I guess that's just not the way my life has mapped out.
Obviously when Bailey was born the rest of the family were keen to meet him so one of my auntie's came over to stay, most of my family live in North Wales. She got to us late afternoon and we ordered in Chinese and we settled down in front of the TV to watch Britain's Got Talent, glass of wine in hand (not me though mind!) A couple of the neighbours came over, it was Manchester Derby Day and so the drink was flowing nicely. Towards 11pm mum jumped up and said "omg your IVs!" She had premixed them and they were all ready to go I just needed attaching. Mum put on her gloves and went to flush the line and it wouldn't flush... She tried and tried but it just wasn't going so instead we tried drawing back on it. Usually my port has a good backflow, blood comes out of it very easily. Not that night, it wasn't budging, I got about 2mls of blood then just air. We phoned the ward and they advised us to go to A&E. They phoned the duty manager ahead due to the complexity of my case and advised us to go straight to triage when we got to A&E and a chest doctor would have a look at the port. I was reluctant to try flushing it again due to the air in the line but knew if there was blood in the port by the morning it would have clotted and so I'd have lost the port and would need a new one putting in. Everyone in the house par myself had had a drink! Awesome, any other night of the week (and most weekends) they'd all have been sobber! By this time I was tired and felt like I'd spoiled the evening for everyone, I started to get upset by the whole situation. My heartrate was already racing from my late evening nebulisers and as it started to race more with me getting upset my hands and eyes started to feel a bit floppy. I've giggled at it before when I've read it on the back of an 'directions for use' label on the back of an epipen label but an 'impending feeling of doom' was one I've experienced before (I've had anaphylaxis before) was the best way to describe it and I barked at mum to get me an ambulance. By the time she'd got through to ambulance control and my auntie had reassured me and helped me concentrate on just breathing I was fine. I was infact about to slip into one big panic attack. Pre transplant I never had panic attacks, just recently I've had one big one and get feelings I manage to breathe through at least once a day since I got home. Something that could do with better control I think, anyway if not for my auntie at that moment I think I would've had one big panic attack. I love my family.Myself and auntie K
Anyway by the time a sober family friend had been found to take me to A&E it was 11.45pm. To cut a very long story short the chest doctor managed to get hold of one of the night nurse practitioners (NNP) that knew me well and one flush with heparin, an anticoagulant was all it needed. The NNP gave me a vile of heparin to hep-lock the port overnight. I got home at 3am, tired, stressed and emotional. What a night.
On the health front I had clinic today. I've just felt generally run down breathing wise since getting home, OK in myself just not as good as I was in hospital. I raised the question recently over my antifungal treatment. Out of three bugs I've grown since transplant two of those we're fungus. My antifungal treatment was until I left hospital Caspofungin IV because I grew a simple Candida in my lungs whilst in hospital. I'm unable to tolerate the other commonly used conazole drugs (Itraconazole and Voriconazole) due to the side affects so when I went home my antifungal cover stopped. But there is another drug on the market now that's becoming more commonly used, Posaconazole. It's said to be well tolerated and is easier on the body than the other conazoles. Today my consultant decided going on that would be a good option, he sent an email to, I'm going to call him the 'bug man' because off the top of my head I can't think of his actual title! But he's the guy that has to give the ok to start this drug, in the mean time and since I've been feeling a bit off he restarted my Caspofungin IV to see me through to the cross over to Posaconazole.
Well I hope your still with me after that long and varied catch up! I'll leave you with a snap of me enjoying the late afternoon sun in the garden the other day.

:-)

2011-04-08T13:06:00.001-07:00

Doesn't everything seem so much easier when the sun's out and its warm? This temperature, around 12'c-15'c suits me perfectly at the moment, not too hot and not too cold.
My life really is a full time job of planning at the moment. Everywhere we want to go takes a day to plan in advance. I made it out to the Trafford Centre for I think a well earned shopping trip the other day. I have inherited a mobility scooter from my grandad who passed away recently and I have to say it's a gem. I despised them pre transplant and refused to use one, I have no idea why, I just didn't like the stigma attached to them. They seemed to make me feel 'more disabled' yet I was happy to sit in my wheelchair? The mind boggles!
We planned and measured the night before and managed to get a large 2ft oxygen cylinder (weighing 15kg!) sat between my legs and my liquid oxygen cylinders on the arms of the scooter which gave us more than enough time. I had teething trouble with the accelerator getting caught on the cylinder (scary moment) and managed to take out a rack of scarves in Accessorize (embarrassing moment) but had a great day. We also had lunch out, something that a few months ago would have been a challenge for me. I still require highflow oxygen so eating is still a challenge but I've managed to solve this myself by purchasing a Biflow mask. (I must buy more of them now because otherwise I won't be able to eat!) But my nausea since the transplant has been the main problem, I'm PEG tube fed (or at least topped up) because at one point it was so bad I was retching up NG tubes and kept very little diet wise down. Since going on a subcutaneous Nozinan infusion it feels like a switch has been flicked, I feel 'normal' after eating and the thought of going out to eat doesn't scare me. The difference has been amazing and as long as the pump doesn't leak I'm rarely sick now.
I feel so much more positive being at home and although at times it is far from easy, I can say the lungs are damaged and my god there are moments I can tell (by that I mean at times the symptoms are very noticeable!) it's worth the hard work just to be around the people I should be and be in the place I should be in.
I saw the team (or one of the doctors anyway) on the ward on Monday for a review. At the weekend I contacted the ward after 'not feeling right' on Friday night. I couldn't say exactly, just I was panting more and my heartrate was raised. I feared my CRP (marker for infection) had risen again and I wanted bloods doing to be safe. After some persuasion it was agreed I could go to the ward and have bloods done from my port. Come Monday we had the results, of course I was right, my CRP had risen only slightly but enough to warrant an IV change. So now I'm on IV Tazocin and feel better already for the swap.

2011-03-28T11:33:00.000-07:00

I made it home. Gosh that feels good to say. There was a point where I saw myself never leaving my hospital room again. I sit here and wonder how we've managed it, I say we because the transplant team, nurses, physios, everyone played their part in getting me home. It's taken hard work, perseverance and pestering. I think it's fitting (especially with Mothering Sunday round the corner) I mention someone else that's HAD to play their part. Since transplant it has been a learning curve for my mum, pre transplant I wasn't on feeds, I didn't have a PEG or a port and towards the last 12mths before my transplant I wasn't in hospital (because there was nothing they could do but I did spend time in the hospice). Since coming home I'm on 6 IVs (steroids and an antibiotic called Meropenum), 12 nebulisers, 60 tablets a day plus oramorph, PEG feeds and fluids and a subcut Nozinan infusion (as antisickness not for psychosis!), the latter is the only thing that's looked after by district nurses. My mum is in two full time jobs, one as a carer everything from getting me dressed in a morning to washing my hair at night and the other as a nurse preparing IVs, sorting through my 40+ medications and ensuring I'm getting enough oxygen. I mean it when I say I don't know how she does it or where at times she finds the energy. If it wasn't for her I'd either still be in hospital now or I'd be in some form of care home somewhere. It deeply upsets me when her friend's say "can you just do this? I know you have alot of time on your hands!" My mum is my rock and I think it's fair to say I wouldn't be where I am now without her.

On March 11th I celebrated my 1yr Transplant anniversary. On the 10th I lit a flameless candle for the donor and her family on, a year ago a day that would have been one of the saddest days of their lives and I left it on for 24hrs. On the 11th I celebrated. I celebrated the fact that without my donor I wouldn't be here now, love, giving and new life. I had mum get me green helium balloons and we wrote messages on them, I ventured out of my room with mum, my nurse and physio to release them in her memory. We put annivesary banners and balloons up in my room and we celebrated and gave thanks. My physio took the snap, it would have been a good one if my eyes weren't shut!
Maybe I'll blog again in a few days when I'm settled in at home a bit but I think that's all I have to say for now :)

It's been a while...

2011-02-20T04:10:00.001-08:00

I wanted to wait to post on here so I could share how I spent Christmas at home and various bits and pieces in the media to thank my donor and her family that I was here to celebrate Christmas. I managed to spend Christmas at home with my parents and we had a good day. And you don't know how lucky I feel to be able to type that sentence... In another household somewhere in the northwest a family was experiencing a different Christmas, their first without their daughter. A reality that my parents were facing so we made sure it was special and lit a candle for her.
From boxing day, on what seemed to be like a downward slope I started to become unwell. By the time I started spiking temperatures (which I thought were just a result of having the flu jab) on New years eve I was tired, not eating or drinking anything, being so sick I couldn't tolerate my peg feed even being carried upstairs was to much. I spent most of my time asleep as that was my only escape from the breathlessness I was feeling. My "I can't do this anymore" moment came on bankholiday Monday I was readmitted to the ward and they found, thankfully, there was some infection in the lungs. I say thankfully because something can be done about infection, its treatable. My infection levels came down very quickly and antibiotics were stopped after just over a week. Skip forward a while and its looking like my lungs have developed some sort dependency on IVs, I start IVs, feel better and infection levels come down, I get back on my feet, IVs are stopped, I feel rough again and have to restart IVs. I'm also having trouble coming off IV steroids, I come off them, I'm okay for a few days then I just can't catch my breath have a dose IV and I'm okay for another few days. It's crazy and so frustrating. At the moment we're working on my oxygen, I've become dependent on highflow (why do I feel like I'm in here picking up bad habbits?!) at the moment I just can't get my breathing right and feel comfortable for long peroids of time on anything less than 50litres. That is a big problem. They are able to deliver 30ish litres maximum in the community and that is at a push with 4 highflow oxygen concentrators hooked together. I don't know what's going to happen yet or what I'm going to do but I'll keep you posted.
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2010-12-19T14:42:00.000-08:00

Well I haven't blogged because I haven't really known what to say these past few weeks. I got home again thankfully, my mum and I have been trained to give my IVs at home and now we have a large dripstand and infusion pump sitting in our utility room. That's going fine, the strength of the drug and the fact my Tacrolimus (FK) has now been upped now I'm off Itraconazole (Itra interacts with FK and bumps the levels up so you don't need as much) has taken it's toll on my kidneys and last week my kidney function hit a low with my Creatinine spiking well over 200 (normal is 50-100 I think! My normal is about 70 anyway). We spent most of last week in clinic whilst the team played around with my FK, dropped my Ambisome to 3 days a week and kept me behind for IV fluids. Since being dropped on my Ambisome my cough has become a bit more 'junky' and my weight is down. Related or not I don't know but I hope not, I could do without further complications this side of Christmas. I saw my doctor on my own on Thursday, we haven't always had a great relationship but we get on well now and I can open up more to him more now than I've ever been able to. I don't know what he must think of me at the moment though because the last two times I've seen him its ended in tears. I cried about the fact my dad has to carry me up the stairs now and the fact I can't even stand up to brush my teeth in a morning. Of course there's not much that can be done about any of that now but he did prescribe a small amount of morphine to take the edge off the breathlessness. I was on morphine for just over 12mths before my transplant, if I'm honest it shocked me a bit, I know morphine is given as a bit of a last ditch attempt to make things just that little bit easier when nothing else really can. I am grateful to be back on it because things are bad now and I appreciate anything that would make things easier but I didn't expect to be back on morphine, not so soon anyway. It upset me a bit as I think it was a bit of a final confirmation for me that things haven't really gone to plan.
I'm looking forward to Christmas, one I certainly wouldn't have seen this year if not for my special gift.

There's always hope...

2010-11-23T11:42:00.000-08:00

Wow when people tell you transplant is a rollercoaster, they really aren't lying. The last 2wks have been a crazy ride of emotions. Today in particular.
In my last blog I talked about clinic and going back a few days later to see if the increased doses of the anti-rejections had made any difference. I did go back to clinic a few days later in a similar state, probably slightly worse off. It was decided there and then I needed a bronchoscopy to see what was going on. Seen as I was out of breath, on my doctor's request I agreed to have the bronch without any sedation (yes I'm crazy like that). He was hoping, as we all were, the problem would be something immediately obvious and fixable. Not long after my transplant my Anastomosis (complicated medical word for where the donor lung is joined to recipient tissue, in this case airway) in my right lung had narrowed. I had it surgically stretched and it made me feel better almost instantly. But this time it wasn't the case, the Anastomosis looked almost unchanged and I had a strong feeling that was the case anyway, something felt different. The only thing the bronch really showed was some sticky 'jelly like' mucus in the bases of both lungs. Not really a nasty, dirty colour like you'd see in infection but it was just there and didn't really seem like it was supposed to be. So the samples were sent off and the only thing we could really do was cross our fingers (as strange as that sounds) that something grew from it because if nothing did there was nothing more to be done.
Two days later following a temperature, a very unhappy tummy and a junky cough my mum called the ward and I was readmitted. At first it didn't seem obvious, even to me what exactly was wrong, I just didn't feel 'right'. The team looked into every possible test whilst keeping me comfortable and hydrated, they were still waiting for the cultures from the bronch. Then after the weekend the results came back, they had found a fungus in my lungs called Aspergillus. I had heard of Aspergillus, it was something I was tested for regularly with my old lungs because of my symptoms but I'd never grown it. I've been on treatment for it (Amphotericin nebulisers, Itraconazole and Voriconazole (Vfend) prophylactically, since my transplant to avoid catching it but Aspergillus like most bugs is changing all the time, becoming clever and immune to certain drugs and it seems that's maybe what's happened. Given how breathless I was, how I'd already been on treatment and how I wasn't able to tolerate Vfend which would have been a good opition to switch back to it was decided I was to start on IV AmBisome (basically the same as Amphotericin but alot kinder to the kidneys, something very important post transplant as the kidneys get a battering from all the drugs). AmBisome is a good drug but it will take it's time to work and I'll be on it IV for a minimum of 6 weeks, thank god I got my port-a-cath when I did. It's not so much having a fungal infection in the lungs that's the biggest issue, my CRP (marker for active infection) is less than 1 the Aspergillus acts as more of an irritant making the lungs inflammed and generally a bit unhappy. (see ABPA for more info).
The big question now is obviously will I get loads better? Now this has been found and I've started treatment? My team are an excellent team and they're doing everything they possibly can and I believe that. They're good though at times at painting a rosy picture, telling patients what they want to hear to keep them positive and happy they do this because in transplant a positive attitude is at times half the battle. I like to know what I'm facing so I can work out how best to deal with it, the team have learned now that's how I am and they have been very straight, and, well, a bit blunt. In a nutshell they're 'reasonably' confident they can improve me overall by 5-10% with the AmBisome and fingers crossed getting rid of the Aspergillus. Back to my pre-admission self. But will not give me false hope and say I'm going to get much better than that and cannot say what the future will hold. They aren't confident I will come off oxygen again (at the moment I'm on 8-10LPM) and I may still find moving around just as difficult as it was. And I think I need to believe that, I cannot afford to set myself up for anymore disappointment, I know doctors have been wrong in the past and hell at times I've gone out of my way to prove them wrong but I'm going to believe what I'm being told, any improvement beyond what is expected will be a bonus. The thing that sprang to my mind was was it worth it? Possibly months of IVs for a 5-10% improvement? IVs are alot of work, in hospital they just get made up in pharmacy and administered, at home the chances are that won't happen (mainly because of the nature of the drug) and we will have to mix them at home. On top of that everything has to be sterile because the port line and drug are being given directly into my bloodstream (ports can be a major source of infection) and we will have to be trained on an IV pump because the AmBisome has to be given over 2hrs to avoid any reactions. But I did not battle to get these lungs and come this far with them to settle for anything other than the best I can be.
ANY improvement will be worth it and so I will do the IVs.
My doctor's words will stay with me "Your one tough cookie, you've proved us wrong in the past and I wish we were having a more optimistic conversation but there's always hope..."
Indeed there is.

2010-11-05T04:11:00.000-07:00

Yesterday I had a monester of a clinic appointment. My first proper one since being home. Post transplant it is so important to keep up with appointments to monitor things. At the moment I'm at clinic twice a week for one reason or another. The appointments can be hard on me, I was there over 6hrs yesterday, I left feeling drained physically and mentally. My lungs have not been so good over the past few days, they have been slightly wheezy when I've over exerted and that really hasn't taken much. I seem to be running out of breath more than I was, at the moment I'm not even able to stand up for long periods of time. It is so disappointing and so scary. I saw my consultant and after catching my breath explained how my first week at home had gone. He confirmed my lungs were slightly wheezy and took the decision to up my Prednisolone and Azathioprine in the hope some of the inflammation can be knocked on the head. I left feeling deflated, worried and scared. I've only felt scared a couple of times since the transplant but at the moment I can't seem to shake the fear and it's just leaving me feeling miserable. I want so badly for things to go right. The transplant team are doing everything they can and I can't sing their praises enough. I've never had so much support from a medical team. I go back to clinic again in a few days to see if the increased doses have helped.
Fingers crossed...

Life is what you make it

2010-10-30T06:17:00.000-07:00

I came home (properly) on Wednesday. So much has happened over the past 2mths, some of it somewhat unbelievable. Since being home I haven't really done so much, adjusting to life with a PEG tube is taking time. There's alot of maintenance at the moment because it's still new but I'm already feeling the benefits of improved nutrition. It's funny, you don't realise how much your lacking in the essential things, like that, until they're given back to you. I hadn't realised just how bad poor nutrition was making me feel.
Yesterday I went to the funeral of another lung transplant patient. He died suddenly on the ward last week, it was somewhat unexpected. He was transplanted around the sametime as me and lived not too far away. The funeral was of course upsetting, for me personally it got me thinking about transplant, life, death and everything inbetween.
A comment recently got me thinking too. Someone said "you must be proud of how far you've come". Am I? Not really, what do I have to be proud about? I've just doing the best I can with what I have which is what anyone would do, the fact is I have a whole lot more now to make the best of. I'm not proud, I'm just doing or have done what anyone else in my situation would have because really what options do I have? Realistically I can't stamp my foot and pout my lips and say 'no I'm not having that bronchoscopy and I won't take that medication'. The transplant was do or die for me. It isn't that way for everyone, some people have a choice on if transplant is right for them, for me, in my mind there was no other option, the alternative to transplant, well to me there wasn't one. I was not ready to die, I was determined I wasn't going to die of my lung disease and I was too stubborn to sit back and let it kill me. Maybe it's my stubborn streak that at times keeps me going, I don't know but I do know what are sometimes considered negative aspects of people's personalities have helped me along the way and kept me grounded and realistic. I don't have unrealistic expectations of transplant. I never wanted to run marathons or jump out of planes, don't get me wrong the lung function to be able to do that would be nice but I didn't have a transplant to become an athlete or an adrenaline junky. I had one to save my life and that's just what it's done :-)

are you ok?

2010-10-09T13:30:00.001-07:00

I've had so many people ask recently how I'm doing and besides "ok I got a port put in today and I'm to have a peg soon" I haven't really been able to explain how I'm actually doing. I guess the best part of all of what I'm about to say is I'm doing better than I was 5wks ago. Before I went into hospital I didn't even have the breath to stand up at the sink for long enough to brush my teeth and wash my face, the day I got admitted mum had to put a stool in front of the sink for me. I was bad, I just hadn't realised how bad.
Now I'm going to try and explain what's going on, as best I can anyway. A few weeks ago I had a lung biopsy to confirm if it was rejection, I didn't think it could be anything else but the biopsy was negative, NO rejection. The biopsy (and CT scans) showed inflammation and scarring or fibrosis. Basically something has injured my lungs (we aren't 100% sure what and we may never know now) and it caused inflammation which in turn caused permanent scarring. This isn't going to go away, nothing can be done for fibrosis. The hope is now that whatever caused the injury was acute and it isn't something that is going to continue injuring the lungs. The problem I'm left with is my lungs are once again scarred, they're never going to be normal, scarring doesn't go away. All I can do is build up my exercise tolerance as much as possible to maximise what I can do with them. I'm still on oxygen, I don't know when or if I'll come off it.
I guess what I'm focusing on through all this is this isn't ideal, far from it but it's better than the situation I was in pre transplant. I feel better than I did pre transplant, I have my days but everyone does, my life has already been extended as far as I'm concerned it's already been proved that transplant was the right decision. I don't know what my life is going to be like from here on out but I don't really care because I'm alive and that's all that really matters...

Rant

2010-09-27T12:18:00.000-07:00

I'm feeling the need to rant, not a negative rant though. Last night one of the nurses that's looked after me quite alot over the last 6mths, asked, well said "I bet you must have regretted having a transplant at some point?" This is a subject I feel so strongly about. I have had my fair share of problems lately some completely new issues that I know nothing about and at times I've not known how to deal with them. I have had to put my trust fully into the transplant team, something I found at first extremely hard to do given the trouble I've had with medical teams in the past. But anyway back to the original statement, I answered without any doubt in my mind 'not for a second'. It would be so easy for me to become like that, I've seen it happen to other patients on the ward and hell I've had my problems since transplant some days I have felt like giving up, like I’m fighting a never ending battle, things are not perfect for me right now and we know now they maybe not be, that's another blog altogether (!) But I'm 100% sure I did the right thing with going through with my transplant. It's the best thing that's ever happened to me and I feel so lucky and so privileged to have been given my gift, my second chance at life. I have friends that have been waiting years and I've also lost friends waiting for lungs and I know that I could easily have been one of them. That sometimes makes me question why I've been so lucky but I'm not opening that can of worms!
Someone else also commented saying something along the lines of "oh I thought a transplant would make you so much better". Well it has! It was never meant to be THE cure, I knew that when I signed the consent forms, I never went into transplant believing that it would make my life perfect that would be silly. Even with the problems I'm having, I don't need a ventilator to keep me alive or even half as much oxygen as I did pre transplant, I don't feel constantly ill and like my next breath could be my last, that's the best feeling of all and to top it off I'm not dying, I'm living and now I have the potential to go on living for many years. Something that I've never had before, the potential to live, not die. Just a chance, that’s all I wanted and that’s what I’ve been given.
So the bottom line is, yes there's problems and I expected them they're just new challenges I have to face. But this is my new life with new lungs and I appreciate every second of it.

2010-09-15T15:35:00.000-07:00

Hmm well my aim of being in and out within a few days? That went a bit pear shaped! I'm still here. Quite alot has had actually. My 'small Pneumothorax (lung collapse)' I mentioned in my previous post decided to get a little bit bigger as a result it was decided I needed a chest drain. I guess I should have seen it coming really but I just believed the right lung had done with its dramatic behaviour and would just reinflate. Wishful thinking. So for the past week I've had the privilege of lugging round what is basically a bucket attached to my chest. Not so much fun. And at times pretty painful.
My veins have well and truly given in, access is near impossible luckily one of the transplant doctors managed to get an IV in half way and rescued it by threading in a long line up it which I'm clinging onto for dear life! I'm hopefully getting a port put in at some point though which will make life easier.
Most of my transplant drugs have been changed to alternatives so I'm now adjusting to those changes they haven't been easy on me and I've had alot of sickness whilst the team get the levels right. I have a bronchoscopy and biopsy scheduled for Friday, I'm hoping this one will go ahead and give us some answers. I think that's it for now.

Back in

2010-09-03T01:29:00.000-07:00

Well I've been feeling a bit crappy for a couple of weeks. I started to notice a gradual dip in my exercise tollerance, an increase in breathlessness and lack of appetitte plus my cheeks were constantly glowing! Related or not I don't know!
I had a CT scan last week and I'm quite glad it came along on a day I was feeling really quite bad as it reflected how I was feeling in the following clinic appointment when I got the results. It showed I had a small pneumothorax (collapsed lung) in my pesky right lung, it seems to be the mischievous one! And 'scraggy' white patches which looked like inflammation over both lungs. My consultant said he'd seen alot of this before and although there was more than he'd have liked to seen he wasn't too worried but did want to get to the bottom of what they were, for sure, asap. A bronchoscopy and biopsy were planned for the following Thursday, just 2 days later. Wednesday saw me lounging in pjs all day with no energy or breath to do anything, I was back on oxygen and I couldn't even stand up long enough at the sink to wash. I had a few teary moments, out of frustration, feeling helpless and the worry that this is just how things were going to be, that this was it. Everything was an effort and poor mum was waiting on me hand and foot, I felt so guilty. I turned up for the biopsy yesterday and my consultant (different one to Tuesday) was weary. I admit I was worried about how I'd cope with the bronchoscopy as I was feeling really quite bad but I wanted it done so they could get to the bottom of it and I could get back to feeling better. After a chat and a check of my oxygen levels it was decided I wasn't well enough and it was cancelled. They sorted a bed out on the ward and I was sent up. I'm being treated for a bout of rejection, my second bout now (I had a bout during recent pneumonia) so they're looking at changing around my antirejection medication to prevent further bouts. Rejection is common during the first year of transplant, its takes a while for you to adjust to the treatment. But I find it so worrying, rejection brings back all the memories of my old lungs and my struggles I had with them, the struggles I don't want to be reminded of.
Anyway now the treatment has started I'm already starting to feel a bit brighter and hoping not to be in too long.

Thoughts

2010-08-12T12:27:00.000-07:00

I've been doing alot of thinking lately, I know not always a good idea. About my lungs, my health, my donor. I asked about my donor whilst in clinic the other day in view of writing to my donor family (if anyone could give me any info on how to write my letter I'd appreciate it!). My lungs came from a 20yr old local woman. It was shocking to hear my donor was actually younger than me, I just presumed the lungs would have come from someone older than me. 20yrs old is no age to die and what her family is going through now could easily have been what my family had to go through. But because of that young woman and her family I'm here today and couldn't be more thankful.
I've had 2wks at home and although I'm still struggling with breathlessness, needing a bit of oxygen and I think recovering from the Pneumonia I'm actually for the first time since the transplant starting to feel more human and, well, more me. Feeling like this has reminded me how much I hate being ill and also how much I've missed out on because of being ill.
On Wednesday I met friend Laura for lunch. Laura is 30 and had a double lung transplant roughly 6wks after me, we were next to each other on the ICU for a while and we had similar, rocky recoveries. When she made it to the transplant unit we would sit up together late at night and just chat. It's nice (well not nice because I wouldn't wish a complicated recovery on anyone) to have someone that knows exactly what your going though and has been through the same or similar. Laura had Pulmonary Hypertension and although the team are still monitoring her heart closely she's doing well. Its little trips out like this with friends that are playing the part in making me feel more human and more normal, even if I am anything but ordinary!

2010-07-30T10:42:00.000-07:00

Erm stop the ride I'd like to get off?
Lack of blogs, again, sorry.
I caught a rather nasty pneumonia and ended up in ICU. I can tell you it wasn't fun. It all seemed to happen so quickly, I'd called clinic on the Friday as after having a Bronchoscopy on the Thursday I wasn't feeling 100% and felt like I maybe needed antibiotics. My consultant who had only seen me the previous day when I was feeling ok said he was happy for me to wait until Tuesday's clinic where I could have blood taken to see if I really did need them. And I was in agreement with that (if I hadn't I'd have just pestered my GP for some), it seemed the sensible thing to do. On the Saturday I was feeling ok but in the evening felt 'shivery' and threw up, checked my temperature which was fine, took a couple of paracetamol anyway and went to bed. Early Sunday morning I woke myself up by what can only be described as 'grunting' in my sleep, it was actually mucus rattling around in my lung. With my diaphragm as it is that's not uncommon for me but then I got up to walk to the bathroom. Once back I sat clutching my knees trying to catch my breath on the edge of my bed and decided out of interest I'd check my oxygen levels. Sure enough they'd dropped to just 80% but were slowly coming back up as I was catching my breath. Maybe that should have set the alarm bells ringing but it didn't, it shot to the back of my mind as 'one of those things to tell the Drs at clinic next week'. As the day went on activities were becoming more difficult and the oxygen concentrators in the utility room had to be switched back on. I could hear my heart pounding in my ears and my oxygen levels were in the low 80s, I went for a nap and again started shivering, my temperature had jumped up to 38.4c (102f). At that point I grabbed my transplant handbook and had a look at what acceptable temperatures were, that wasn't one of them. So mum phoned the ward and I grabbed a bag. The rest is a blur of IV and blood gas stabs, CPAP and ICU. The same ICU room I was in post transplant. If I'm honest it didn't worry me all that much, sure it was bad, the infection knocked my lungs for six, I was out of breath but I've had worse, things have been worse and I think that's what helped me keep my calm through it.
I'm home now, slowly recovering, its taking time, I can tell the pneumonia was a big one put it that way. We aren't yet sure if the infection has caused any long term damage but I'll deal with that when we do know.
On a lighter note it was my dad's birthday this week and we got away to Warwick for the night so I'm going to leave you with a picture that was taken of me whilst there as I've noticed there's not all that many of me post transplant yet!

2010-06-28T16:07:00.001-07:00

If there's one thing I value in people it's honesty, I started my blog so I could write about how I'm honestly feeling. I've had some stick recently over admitting how I'm feeling but you know what? That isn't going to stop me. I'm by no means complaining, I couldn't be more grateful I got my second chance and I don't regret going through with transplant at all because I know how much better off I am now. I appreciate so much the well wishes and the "it gets better!" comments, I just wish I could skip forward to that part.
I never expected transplant to be a walk in the park but the complications I've been having recently have brought me crashing down with a bang. It's hard at the moment, I want it so much to go right, I feel like I've paid my price with 8yrs of lung disease, to many near death experiences to count, my battle to get on the list and then stay alive long enough to get lungs and finally living through a double lung transplant. I feel like I've more than kept my end of the bargain.
I had clinic today and had mixed news I had a CT scan last week, there have been a few areas of concern in my right lung, recent CT showed those have decreased in size (well they have but another has been picked up and got bigger) with the recent 2wks of IV antibiotics I've had, this means they're infection. This would be good news but my last bronchoscopy showed I have 'floppy airways' in my right lung, basically when I cough to bring up the mucus they flop shut trapping it and there lies the problem. It's basically sitting there a breeding ground for infection, my cough is already not very good at clearing my right lung anyway due to my paralysed right diaphgram. I'm also having trouble with my white blood cells, on leaving on Friday my myfortic (MMF or cellcept one of my main anti rejection drugs) was stopped due to low white cell count. From what I understand not everyone is on MMF due to this but I'd rather be on it if I can be to put my mind at ease more than anything. The thought of rejection scares the hell out of me. The plan at the moment is to wait and see what happens, the team have as usual been fantastic and are planning regular CT scans and bronchoscopies. I may need some help from an airway stent to fix the issues in this right lung but I'm hoping to avoid that if possible. For now we watch, wait and hope!

- Posted using BlogPress for iPhone

2010-06-17T10:31:00.000-07:00

Sorry for lack of blogs but as usual I have excuses! I was re-admitted to the transplant unit last week in quite a bad way. I went to clinic last week, now I'm still learning about my new lungs I don't yet know what is normal and what isn't and I guess I just thought how I was was how it was supposed to be and it was normal. I'd received reassurance that it was ok and things would get better and with that I didn't make a fuss about how things were, half kidding myself in a way and pretending I was ok. It became clear at clinic it wasn't normal, the team were quite alarmed and I wheezed my way upto the ward.
The next morning I went for a CT scan and later an urgent bronchoscopy and that showed exactly what was wrong. The team struggled to get a 2mm scope into my right lung. Myself and the donor were not 100% the same size, that of course is not always possible, to find two complete strangers that are exactly the same size. And so where the donor lung is attatched to my airway there was a size mismatch and to repair this my body healed aggressively with scarred tissue and this lead to a very narrow airway, infact about the size of a pin hole when its supposed to be around 4cm. This meant there was alot of trapped mucus in the base of my lung and that was the cause of the grumbly, wheezy noises I'd been making with very little effort and the hacking night time cough. Thankfully I didn't remember anything about the bronchoscopy as apparently it was quite nasty and one of the surgeons was pulled away from theatre to look at the tiny airway they saw on screen. It was decided instantly it couldn't be left and the next day the same surgeon was called in (it was weekend) and handed me a consent form. I was nervous but knew something had to be done my breathing wasn't great at all, I was on oxygen, cpap and alot of IVs. In theatre I was put under GA and the narrowing was mannually widened and the trapped mucus was cleared. It all went straight forward and I was back to the ward within an hour. The wheezing had stopped and I could breathe a bit easier apart from a bit of bleeding. The day after I was seen by the on call consultant and another bronchoscopy was planned for the next day, he was concerned there was still alot of mucus in the lung that was to thick for me to clear. So I went for another bronchoscopy which I was told looked alot better partly because the camera did actually get into the lung this time but there was still alot of mucus. The operation will have to be repeated at some point and probably again in the future. Since then I've been recovering on alot of IVs and with lots of help from the physios and of course the transplant team. This blip has shaken my confidence, not in the transplant team, I can't fault any of them and can honestly say I've never trusted a whole team of people before but I trust them but it's taken me back a little to 'these lungs were not mine, they've come from someone else, they haven't always been there like my old one's were'. I'm taking it as just a reminder and plan to take things a bit easier when I next get home and not try and cram everything in like I did. The team still have a few things to straighten out and it looks like I'll be until about the end of next week but I'll keep you posted.

new beginnings

2010-05-30T00:23:00.000-07:00

On Friday (May 28th) I made it home! I've been through alot in the last 79 days but I know it's all going to be worth it. I won't lie it is hard being home, things I didn't even have to think about in hospital have suddenly become an issue. The fact that not all steps and seats are the same height threw me a bit. When I got home mum helped me out of the car and due to my excitement I forgot there was a drive to tackle, hills are not something I've properly taken on yet and drive feels like a steep one! And attempted to 'dash' into the house forgetting there was a rather large step and nearly toppled over, thankfully mum was behind me. First night home was a bit uncomfortable, stretching, bending, twisting and lifting litterally anything is still a little painful and I didn't sleep to well. Don't get me wrong I feel good but recovery is still in it's early stages, the fact that I can do all those things and still breathe at the sametime is still a novelty to me. I love thinking about the things I have planned, the things I'm thinking about planning and the fact that there's going to be many more to plan in the future. Hell the fact I actually have a future to think about now is amazing in itself.
Organ donation is a miracle, I'm living proof of that!

Onwards and upwards!

2010-05-20T13:33:00.000-07:00

Hey guys, Pete Again

Rach has been doing fairly well, she said to me that she feels a little stronger yesterday so thats good !

She said to tell you she is having to use overnight cpap as her lung seems to be a bit grumpy right now, and this may be long term while she strengthens her new shiny lungs, but she doesnt mind, its better than 24/7 !

She also said her team are fantastic, really looking after her and helping her along :-) I know from what she has been saying that her surgeon, Mr Yonan is also a great guy, funny, sarcastic and knows his stuff, which obviously makes things alot better for her ! He gives as good as he gets with our Rach too, which is a brave thing to do !

Thats about it, Il leave you with a pic she sent me this week :

Quick update from Pete

2010-05-17T08:51:00.000-07:00

Hey all Pete again

Rach asked me to update you all as she has been SUPER busy recently with Meds and getting herself as good as she can.

She has had a rough time to say the least. Infections are the latest in her battle to recover, and she is currently fighting them off with a whole wave of nebulisers and IV antibiotics. But they are doing the trick slowly which is positive !

She had another Bronchoscopy today so she is understandably very tired now and fairly sore (So dont be surised if she doesnt update facebook for a few days) but hopefully all will have gone well with that and she will be ok after some rest.

She is also doing alot of physio to strengthen her lungs, another reason she is so tired, but this is a good thing as it means she is working hard at it !

And thats about it for now, she could do with some mendy thoughts still, so send them her way please :-)

Pete

A quick hello from Rachy!

2010-05-02T14:57:00.000-07:00

Hello bloggerland! It's me!
I thought I would write a quick entry to say thankyou for all your kind messages, cards, gifts, texts, emails, I have read every single one of them. You are too kind.

As Pete said I'm now out of the intensive care unit and settled nicely on the transplant unit. I know some of you have asked for the new address so here it is:

Jim Quick Ward (transplant unit)
Wythenshawe hospital
Southmoor Road
Manchester
M23 9LT

Things are going great right now and I feel so much better. I'm working hard with the physios and getting stronger every day. I feel so very lucky to have such a supportive team behind me and I owe them along with my kind donor family and donor my life. From what we have learned recently about my old lungs we know I really didn't have very long left and my call came just in time.

Before I sign off I have the press coming on Wednesday and the plans are I will be on both BBC and ITV news (regional) and also featured in the Manchester Evening News. Look out on facebook and twitter for times and for those outside the northwest sky channels. I'll leave you with a picture taken today.

Life with new lungs...

2010-04-15T13:01:00.000-07:00

***Update 1st May***

Ahh, first day of a new month and a first for Rachy since her Transplant :-D

Last night, Rachy, Myself and a few friends spent the night chatting via webcam. First time Ive seen her in person since before her Transplant 7 weeks ago hehe.

It was absolutely fantastic to see her moving, smiling and chatting away, I wont lie, I've missed this ALOT and so had she.

She looked fantastic, such colour in her cheeks and huge smile on her face :-D

She was saying how she now has 3500 emails to sort through...So apologises if she misses one or two of them haha! (Although most of them were facebook notifications...) eerrmm, what else? I'm guessing she will be updating the blog again herself soon :-D With me just posting when she is too busy to do so

And thats about it!
Hope everyone reading this is well, and id like to say that if Rach starts blogging herself again, then its been more than an honour keeping you guys up to date on her progress over the last 7 weeks, and if I had to, id do it again in a heartbeat for her, no question

***Fantastic Update 29th April***

Rach FINALLY has her Trachy out and can speak ! She has been waiting AGES for this step, and its finnally happened. This means, she can now SPEAK (And as a result, her Doctors and Consultants have said they want to take their Annual leave haha!)
Hopefully this will also mean she can go on the Transplant ward soon, which will mean less intensive treatement (but still alot of work to do) and a bit more freedom, and of course, its one step closer to the front door...

She is clearly VERY pleased with this, and in her words, she says she *Feels more human* haha yay :-D

And there it is. The update so many people have been waiting for, least of all,Rachy herself of course !

***Update 26th April***

Rach has had a busy day today ! Another Bronch today, took it out of her a fair bit (Completely understandable, its certainly not a walk in the park) Her pseudo is being stubborn so they are thinkign of trying another IV to kick its arse, which although Rach isnt keen on them doing that, she knows they know best !

Not really much more to report im afraid. They plan on getting that Trach out this week but they need to build up to that, and we will only know if thats viable if all goes to plan, so in no way is it certain ! But fingers crossed guys.

I realise she is taking a long time to recover, but please remember that this is a HUGE thing she has been through. Whole new lungs, a whole new body part. Every new thing has its gremlins in the works right? No new buiseness has ever been flawless, no car has ever been built and not had defects that take time to work out. Thats all this is right now....think of them as just bugs in the system. When the docs and Rach know what do do about them, she will fly out of there :-)

Night all, long day !

***Update 24th April***

Rach has just sent me a GORGEOUS pic of herself, so I thought it was time for another mini update and PICTURE :-D

Rachy needs (In her words!) *Sticky up lung thoughts* as her right lung refuses to stay inflated when she breaths on just O2, damn naughty lung ! So send her those please ! Cant hurt right?

Other plans are, overnight vent until they can come up with a plan to get that right lung working, and she had another blood transfusion today ! Busy day for her (Arent they alwasy busy!!) but she clearly has a huge smile on her face !

And here it is:

***Update 23rd April***

Todays Update is in Rachys words, as it very simply explains how she is ! So:

And they wonder why I'm not hungry! (See picture)
Bronch yesterday went well, no real changes it just left me feeling a bit sore. Team are cracking the whip now keen to press on pushing me to do as much breathing on my own again (so far I've managed 4hrs in a day) and of course eat and get back on track with physio! All in all is steady progress and their happy the lungs are getting over the latest infection and functioning well!

Clearly she is ready to start working on getting out of there after her minor setbacks of late, so here's hoping she continues that way ! Im sure she will :-D

***Update 22nd April***

Today is Rachys 6 week Transplantaversary!

Hey again all !

Rachy has had another good day today. She seems to be on the right track in beating the psudo on her chest, and they are hitting it with a whole barrage or antibiotics which should do the trick ! Xray is much improved on last time,a nd she is having a routine Bronch tommorow just to see how things are. After that, they should be pressing on with getting her trachy removed from her throat so she can finally chat !

She is her normal smiley, VERY cheeky self again it seems, which is obviously a huge indication that this massive risk was all worth while (of course!) .

Head of transplant popped in to see her, and made a comment of *Leave that feeding tube in, it suits her* (Jokingly) to which she replied with a...hand, gesture back to him, having the entire medical team, and Head in Tx in fits of laughter hehe :-)

Thats the Rach we know and love i think!

***Update 20th April***

Hey all

Pete back to blogging again, as Im out of hospital and Holly is away for now!

Rach had a good day today, Xray looked better so no need for another Bronch (See earlier mention of Bronch to find out more about this!)
She has started walking and being weaned off the vent again after the last few minor setbacks in doing so.
She says Microbiology are happy she is on the right Antibiotics for Pseudomonas, which i know from personal experiance, can be a pain in the .. bum, to get rid of ! But in Rachaels own words on FB recently:

"Feeling better, kicking some pseudomonas butt"

Hehe and why not indeed !

We also found out recently that a VERY nice person has offered her free driving lessons, as a result of reading about her story in the paper, for her to take up whenever she needs ! What an amazing person huh?

I sent a message to him thanking him and saying it will mean ALOT to Rachy when she is out of hosp, as she is VERY independtant when she can be (Read that as stubborn hehe, but in a good way!) and his reply was this:

"It is a small thing Im doing compared to all Rachael Rachel does. I am so happy to help such an inspirational Lady. Thanks for the Message"

Cant get better than that right??

Anyway, keep well all, and I'll update next time I hear anything :-) and of course will keep those pictures coming as and when she sends me them!

***Update. 15th April***

Hey Holly here again... Not much news since the last update really, Rach still has a bit of infection in her new puffers but the fab transplant team are onto it with strong antibiotics and regular bronchoscopies. The doctors still remain happy with everything and Rachy is keeping the physios on their toes by working on improving her lungs.

I am in regular contact with Rachy and her Mum, they are both in good spirits and are grateful for all the well wishes. Rachy is being her usual mischeivious self and was telling me how she managed to cough out an NG tube this afternoon, which of course she found hilarious, not just at the fact of coughing it out but for getting the physios in trouble for it! Typical! So Rachy's naughty antics continue.... Stay tuned...

Even from her hospital bed, Rachy is still doing fab work in promoting Organ Donation. Click Here to read an article that was in her local paper today!

Just a last note, please could you try and refrain from sending private messages to Pete/Kiz as he is in hospital himself and cannot keep up with them, so the sole point of information will be this blog. Please do comment and leave Rachy some nice messages, I know that she will read them when she can, and it will be lovely for her to look back on when she is home and back in the blogging world!

Watch this space for updates, Much Love

Hol x

***Update. 9th April***

Hey everyone, It's Holly Shaw here! I am responsible for Rachy having the magnadoodle (see the picture in the below post) I bought it for her as I thought it would be useful while she has her tracky in and can't communicate as much as she would like to... although I do hope she hasn't been writing too many rude messages on it!

I'm in regular contact with Rachy and she has asked me to update you all... which I am only too happy to do!

It's one month since Rachy had her transplant surgery and she is constantly thinking of the donor and their family, knowing that its only because of them that she has been given this second chance. She is spending more or less all day breathing for herself on just oxygen with a small amount of ventilation overnight. The fantastic transplant team at Wythenshawe Hospital are working hard and encouraging her to eat. Rachy has a little bit of an infection at the minute which is not uncommon at this stage of the recovery process, so nothing to be concerned about.

As above there was a new article in the Manchester Evening News about Rachy and you can read it here, she looks fabulous don't you think!

Here is another photo for you to keep you going... What a super smile!

So all in all, she is a superstar and is doing fantastically well! Keep doing what you are doing hun, I am so pleased and mega proud of you! Much Love x

Rachy in the news

2010-03-25T10:38:00.000-07:00

Kiz again :-)

Didnt want to clog up the update post with other bits, so Im making a new post for this one !

Rach was in the Tamside Advertiser today, check it out in the link below :-D

http://www.tamesideadvertiser.co.uk/news/s/1201507_pms_get_well_soon_message_to_rachael

Shock and Awe (She got the call..)

2010-03-10T02:30:00.000-08:00

**10.00 AM 10/03/2010**

Hey all

Its Pete blogging here on behalf of Rachy

Just an update (Huge understatement) and what could be the biggest update in the history of this blog :-D

Rachy just got her call !!

She is currently sitting in hospital, gown on and drugs down, waiting to hear if the assessement of her potential lungs from the donor are good and if they are, they can be sent her way !

All hinges on how the lungs of the donor are at the moment, so PLEASE keep everything crossed and I will update the second I get any more info at ALL (Il be updatin this post with edits so please bookmark this and keep checking back today!)

Heres a pic of our Rachy taken about an hour ago for you to enjoy !

*****UPDATE AT 17.00*****

She is on way to theatre now, its a go !

****UPDATE 18.30****

Rach is now in theatre, under anaesthic and its all systems go. Will be many hours, Probably tommorow before any more updates recieved so please keep her in your thoughts as she goes through it tonight :-)

Her mum has added, please try not to send any messages to her phone as it is full to bursting already ! Stick to FB etc, but keep in mind she will not be able to reply in any way and all updates will appear here. :-) . Well done Rach XxX

***** UPDATE 4AM *****

Pleased to say that Rachy is now out of Theatre, Docs are happy it went well and she is now in ITU. Her Mum says she did have a seizure before she went in, but id like to stress that they are pretty common for people going under so its nothing to worry about :-)

Now begins her recovery process of course, she still has a long way to go and it will in no way be plain sailing from here on in, but all things so far looking positive !

Well done Rachy, we are all with you while you recover, and look forward to hearing from you yourself soon !

**Photo Update 14.30 11/03**

No other news to report, but a photo from Rachys Mum was sent to me a while ago, so here it is (with her permission) Also Northwest News will be featuring the latest on Rachael at half 6 tonight :-)

****Update 12th March 2010****

Morning all. Todays update so far is Rach Opened her eyes for a little bit earlier, gave a thumbs up to her mum and went back to sleep again :-) along with the update is the below picture (As always, with Rachaels mums permission)

***UPDATE 12th March 2010 12.30***

Rach is now off Ventilator :-D Photo to follow later in the day :-D

**Message from Rachaels Mum**

She says thank you all so much for the messages, and she is happy for you to keep sending them, BUT, obviously because of the sheer volume she may not reply to them all :-) but thank you again from her :-)

For all those asking where to send Rachael cards etc ! Address is:

CTCCU
Wythenshaw hospital
Southmoor Road
Manchester
M23 9LT

:-)

****UPDATE 18.00 12th March 2010****

Rachy has had a few set backs in the last few hours. Her Oxygen SATS have dropped to 90 as her lungs arent co operating as much as they would like them too. She was taken off of the epidural because it was making her lungs *tired*, basically.

Since then, she has had to go back on the ventilator as they have found that her lungs are full of fluid and they need to decide what to do next.

Rachys mum says to let you all know she cant txt everyone with updates or txt back much at the moment.

Id like to point out that setbacks this close to a transplant are fairly common and it in no way means the worse (As I should have pointed out when I updated earlier)
Everyone has set backs, and Rach will pull through this one :-)

Rach does however, need Positive thoughts more so now than she did earlier today, so please send them that way, and il update as soon as I know more.

**Just a note from Kiz** 20.00 13th March 2010**

Just a note to say that Rach is currently sedated and still on her vent, and will probably stay that way over the weekend at least, so she can bond with and get to know her *New friends* Better.

During this time I wont be updating unless anything happens that you need to know about :-)

****No real updates at this time :-) 10.00am 17/3/2010****

Just to let everyone know, there's been no real changes in Rach. She is still on vent, Docs are still happy with her and she is stable. She opened her eyes for a few minutes on Monday, but other than that, all quiet. Id like to say, that if its not in this blog, then there will be no more news to be updated, and I promise you, it will go on this blog within hours of me being told, always :-)

Kiz

****LARGE Update 16.00 17th March****

Rach has been awake and communicating today, asking questions and managed a smile too ! First Proper day she has managed this since the Tx, so, yay !

****Update 19th March 2010 19.00*****

Another good day for our beautiful Rachy ! Docs are VERY happy with her indeed.
She is still on Vent and Trach but vent has been turned down (Which means she is less dependant on it now than she was) which is fan-TASTIC :-D hehe !
She also managed a brief Twitter update saying :

"Has the most amazing friends, support and doctors, recovering well from my double lung transplant"

Which is the first tweet since 10th March from her :-D

Heres a picture of her holding a card from Sarah Brown of No.10 , with her trademark smile of course !!

**Sat 20th March 2010**

No real Update, she has slept most of the day and gifts are starting to trickle in (along with alot of cards obviously !) Please remember not to send flowers if you are thinking of sending a gift of any kind as they can pose a risk to Lung patients because of the bugs the soil can contain :-)

Thats about it !

**Good Update, Sunday 21st March 2010**

Rachy managed half an hour breathing on her own today, which is clearly fan-TASTIC ! Also Managed to eat an Ice lolly, and even managed a txt to me! Still a long way to go, but she is clearly getting there, so well done Rach ! Litrally could not be happier for her :-D

Rachy with her first Post Transplant Meal !

***Update 23rd march 2010***

Rachy managed 90 minutes today breathing un aided (other than 02) and, I quote, she *Found it a breeze!* hehe ! Even did some marching on the spot today, *YAY lungs* she says ! Needed a bit of physio too but thats nothing really is it ! Heres a pic of her, finnaly in her OWN nighty which she is very pleased about ! Enjoy !

**Small update 24/3/2010**

Rach Managed 2hours on just 02 and her Trach yesterday. Doing SO amazingly well, everyone is pleased with her ! Not much else to update other than she seems happy at the moment, and loves all the cards and balloons you have all been sending (she does LOVE balloons hehe!)

And a photo of her first walk since Tx !

**Photo update 26/3/2010**

Another Pic of Rach, looking AMAZING ! You can also see the top of her brand new scar here :-D

And another pic here...

**Small update 29th March**

Not much to report, but people are asking so here we go !

Rach is still slowly improving, and Doctors are still happy with her. She is still getting tired a fair bit but thats completely expected, she has after all got brand new lungs :-D

Really not much more to say, will update when she starts showing more improvement, as for now she just needs a bit of rest, its been a busy 2 weeks !!!

**Update 30th March 2010**

Just a note to say Rach is doing well, has had a fairly good day today. Fingers crossed that they will keep reducing the need for the trach and vent (which they have been doing today) and hopefully by the end of the week (maybe) they can change the valce in the trach so she can SPEAK again. Can u imagine that, Rach not speaking for nearly 3 weeks?! She is gonna have alot to say.....Love ya Rachy XxX

**HUGE update 2nd April 2010**

This is a message from Rachaels mum which she posted on FaceBook 20 minutes ago. She says it best so May as well go with it!

"What a fantastic easter friday, Rach came off the ventilator today and is breathing on her own, with just a little bit of oxygen, WOW, still on the trachy but that should soon be out in a couple of days. She just wants to talk now but can't at the mo, shes still on intensive care, YAY xx"

She also managed her first full meal today, Sausage and spaghetti *Dances*

I think that says it all really !! Im SOO Looking forward to a voice mail from the lovely lady herself when she gets her voice back..best thing ever.

(And a photo for you here !)

And one more...

*** No news is good news 5 April 2010***

Hey guys. Just to tell you that no news is good news lately. Rach is feeling good and getting on with things needed to strengthen her lungs which is fantastic :-D But no major updates to report yet ! She MAY Get her trach out this week if she is lucky, finnally enabling her to talk (She hasnt managed that bit yet)

She did have one minor mishap today and managed to inhale a drink...But apart from that she is doing well !!

Updates may become less frequent now as she has hit a few HUGE milestones, but of course I'll update you with everything I can until Rach is able to do it herself and take back over !

***Update. 8th April***

Again Not a huge deal to report, she is doing well, and slowly making good progress! She was in the manchester evening news today if you want to try and find that article! And thts about it!

KEEP UP TO DATE WITH THE LATEST NEWS ON RACHY HERE IN A NEW BLOG POST. THANKS x

A quick note

2010-03-08T17:02:00.000-08:00

Just a quick blog. I am reading your messages of support, every single one of them. Thankyou so much. I will hoepfully get round to replying soon.

Rachael Wakefield on BBC North West Tonight from Live Life Then Give Life on Vimeo.

The above BBC interview, not easy but I hope worth it. Have a read about that here I'm again in the local newspaper this week. Will keep you posted.

transplant clinic

2010-03-02T12:18:00.000-08:00

I had transplant clinic today. Recently I've been feeling a bit rotten to say the least, no energy, no appetite, a blank mind, low oxygen levels and a fast heart rate. This morning I felt like it was a struggle to even move any distance. From getting up to take my medication I had to lie on my bed before I could even think about getting dressed. I felt so bad this morning that I honestly wondered how much longer I could go on for. With help I managed to do what I needed to and go to transplant clinic. Once seated I rested my arm on a TV stand and closed my eyes from exhaustion of getting from the car to the waiting room. One of the transplant co-ordinators came to take us round to see my consultant and a look of concern instantly came over her face. The appointment was quite brief with a quick summary of what’s been happening, how much I now need my NIV and how much pressure its taking to inflate my lungs and how unwell in general I've become recently.
To sum things up, my time is running out. Without a donor, I'm going to die, soon.
As difficult as it was to hear that I was in that much of a haze from how unwell I'm feeling it didn't have that much of an impact because I thought 'yeh, how I'm feeling right at this moment I can believe that'. I left with the image of my consultant crossing his fingers; he was crossing his fingers for my life because that’s all he can do now. In the waiting room on the way out I broke down into tears.
Please, if you believe in organ donation sign up to the register it takes literally 2 minutes and you can do it online, my life and the lives of thousands of others depend on it.

brief update

2010-02-28T07:42:00.001-08:00

So long, so much to catch up on but I'll try and keep it as brief (and as painless) as possible.
Las week I got to attend the NHSBT roadshow in Manchester, great day but you can read more about this here. Lots of sign ups, lots of press. On Feb 22nd I celebrated my 22nd birthday. If, a few years ago, someone had said to me I'd be alive at age 22 in 2010 I'd have laughted at them! But I am still here and was able to celebrate and hope to be able to celebrate many more.

We marked the occasion with a 5 day break to Center Parcs in Sherwood Forest (thankyou for my bottle of wine and box of Chocolates CP!), just the break I needed! Paying for it now lung wise but it was worth it, no doubt I will get a telling off at clinic on Tuesday but hey ho.Celebrating at Center Parcs

I was recently offered a place at the charity live life then give life as a patient ambassador. I knew Emily when the charity was just an idea that started off so small and she was on the transplant list herself waiting for lungs, to see how far they've come is amazing and I'm honoured to be an ambassador, along with the lovely Tor for them.

As you may have noticed my blog has had a facelift! Yay for Louise at Adori graphics! What a wonderful job.

I've been thinking recently what I'm actually going to do post transplant? Something I've never really thought about before because it's taken me so long to actually get on the list, it's kind of "well what now?!" So I've been having a think and I've decided to start driving lessons, my first lesson is on Wednesday! Eek! Provided I'm actually able to handle a car (apparently driving can make some lung patients breathless?) I'm hoping to do a crash course. Also I've been thinking about education and what I'm interested in, I left highschool with minimal GCSEs having done them in my hospital bed. Graphics exam + IV salbutamol and steroids = Not good! So I'm going to look into open university courses and if they'd be right for me.

That's about it in a nutshell for now, have a look round my blog, there's new videos and media articles up.
Enjoy!

Freedom and new friends!

2010-02-04T16:23:00.000-08:00

Where has the week gone? AGAIN?! My life has never been so busy, I keep looking at my diary 'ah calm week next week' and yet it still doesn't happen. To be fair if I had nothing to do I'd be complaining I was bored so even though it's hectic it works, mostly.
On Tuesday I went to ventilator (NIV) clinic, to what was, unknowingly going to be a long appointment. My ventilator, VPAP has been a little gem. I realise some people reading this may not understand why I actually have to use an NIV. I'm in end stage respiratory failure (Type 2) due to my lung disease. My respiratory muscles become very tired very quickly because my lungs are stiff from permanent scarring this makes it difficult for me to physically inhale and exhale because I can't exhale to full capacity I have something called air trapping in my lungs. Small airways collapse and trap pockets of air all over my lungs, these pockets contain the waste gas carbon dioxide (co2) which is eventually dissolved into my blood stream to gives me high co2 levels (hypercapnia). Along with this when lung tissue is scarred the ability of that tissue to put oxygen into your bloodstream becomes impaired. In a nutshell I end up with inflammed and scarred airways/lungs and low oxygen levels, scarring makes them stiff so airways collapse which causes air trapping that in turn causes high co2 levels. Phew! That's where NIV comes into a big piece of the puzzle. Although it cannot repair the scarred areas of lung because nothing can it helps me to use my lungs to the best of my ability by taking breaths for me. It keeps airways open so minimises airway closure/collapse so air trapping occurs less and that lowers my co2 levels. It also takes the strain and muscle fatigue off me giving me a break from working so hard to inflate damaged lungs. Physics lesson over to sum it up it makes me feel great!
Now although my VPAP has proven to be doing it's job unfortunately as my lungs have deteriorated over the last couple of months I have been more and more NIV dependent and the only battery option to allow me to leave the house on VPAP was external and weighed around 35lb. It was just impossible. So I went to clinic on Tuesday to look at other options. My NIV nurse called me in and told me to get comfortable because we were in for a long morning. Out my earrings came and the fun and games started. She clipped a transcutaneous blood gas monitoring probe, a fancy little gadget, to my ear and was able to bring up my blood gas (oxygen and co2) levels on screen. Having this type of monitoring and blood taken from my earlobes is something I'm used to. Earlobes are used because alot of arterial (oxygen rich) blood flows to the earlobes and so that gives a very accurate indication of whats going on in my arteries and more importantly my lungs. Although this is something I'm used to it isn't as widely used as maybe it could be because the cost of the monitoring equipment is very high, the alternative is arterial blood gases taken from a main artery in the backs of your wrists, elbow creases and feet and that is as painful as it sounds. So with my blood gases on screen I was switched to a different ventilator. A Nippy 3+. At first I panicked, it wasn't what I was used to, it seemed jumpy and jittery and was throwing breaths at me when I wasn't even wanting to inhale. We had a few teething problems with my oxygen levels dropping but nothing out of the ordinary for me. Once settled my NIV nurse took a blood gas from my ear to ensure the monitor was reading correctly and we were good to go. I feel almost privileged to have such an expert and supportive respiratory team on my doorstep, some people are not so lucky. We stopped for coffee in the cafe as I was shattered and my transplant consultant was, I presume, on a lunch break and we bumped into him there. The doctor-patient relationship has gone from strength to strength recently and I could not be more pleased about it. He gave me a pat on the back and told me to hang in there, something that if I could have for seen him doing 12mths ago I'd have laughed.

(Freedom!)

The Nippy is already proving to be a great piece of kit and with the confidence I had roughly 5hrs battery life (thanks to the on screen calculator) I arranged lunch with a lovely lady I have been meaning to meet with for a while. Holly Shaw. Holly is the northwest advocate for the charity LLTGL and has had a kidney transplant. She is amazing and has done so much for organ donation, scooping a Vinspired award last year for her dedication to raising awareness for organ donation. We made it out for lunch to Frankie & Benny's and spent alot of the afternoon giggling. I did have to politely remind her though that candle lit dinners were not a good idea when she suggested lighting the candle on the table... Oxygen + naked flames = BOOM. Her 'Hollyisms' (like blonde moments only worse!) were fantastic and I hope to hear many more of them, I have a new photo album to fill with our antics ;-)

Next week I have a bit of a line up too, topped off with a small bit of plastic surgery on one of my fingers to repair a nerve. Nothing major but it will see me in a splint with stitches for my birthday, super!

better times ahead?

2010-01-29T13:05:00.001-08:00

The last few weeks have been crazy and I'm a bit lost for words, still. So I'm going to keep this one short (-ish). It has been a sad couple of weeks and a bad start to 2010 for those in the CF and transplant communities. I hope it's true when they say "it can only get better".

I'm channeling my energies now into raising awareness for organ donation in the hope that one day people waiting 4yrs+ for new organs is a thing of the past, I want that acheived, even if it isn't in time for me. I have some exciting plans hopefully coming together, more on that soon.
Health wise in the last week or so its been chaos, with appointments. As much as I don't mind going to them, it seems to be all or nothing. And "can you just pop in?" no, there's no 'popping in' with appointments. It takes me 1.5hrs to get ready in the morning, ventilator off, nebulisers, inhalers, tablets then I can do what normal do (with help) like get dressed. For example on Monday, I got up at 7am, was out of the house for 8.30am, traffic, so got to the hospital at 9.15am, appointment was over at 9.50am stopped for a coffee because didn't get time to get anything to eat or drink. Had to drop into ventilator clinic for a blood gas. Left hospital at 10.20am got home at almost 11am by which point I was wrecked and had to go back to bed. I struggle to stay awake more than 4hrs as it is, I'm a nightmare (maybe that should be morningmare?) in the morning as it is. So 'nipping' anywhere anymore is just completely out of the question! Next week I only have a couple of appointments, hopefully for a change of NIV on Tuesday to sort out my headaches and an assessment on Thursday for a new wheelchair to cope with new NIV. Then on Sunday (7th) I'm meeting a few NewStart/transplant friends for some lunch, which I'm sure will be interesting, so nice to hear the transplant success stories.
On Feb 22nd I have my 22nd birthday coming up. Not really a special birthday to many people but I'm conscious at the moment that I should make every occasion that bit special. I'm not so sure if that's a good way to think or not. I won't lie it does cross my mind 'make this one special not just for you but friends and family too, it could be your last' I hate to have to think like that but I just can't help it. I mean what about every other normal person that has a birthday and celebrates it not knowing it is actually their last? Because I know for me it's a possibility that it could be my last does that really make me any different? Ok I'm going to stop there before it gets too deep!

Playing catch up

2009-12-31T03:26:00.000-08:00

First off here's the article about my special gift to the hospice (here).© Manchester Evening News

Christmas Eve

I've always believed Christmas is as good as you make it as with other special events, days, making the best of what you have makes the day what it is. This year I didn't expect Christmas to be an easy going day and it wasn't but we still made it a special one and enjoyed it. Of course Santa was very good to me and spoiled me.
Not too long after that article had gone out in the local paper I got a call from the Manchester evening news. They said NHSBT had contacted them over the 'help save my life' article and Channel M interveiw to say that as a result 3000 people in Manchester signed up to the organ donor register. As I was told this over the phone my eyes filled up. At the time when it came out I thought, it's quite good maybe 1 or 2 people might sign up and even if its just 1 or 2 that’s enough for me, that's my job done. But to hear that 3000 signed up took me by surprise, the thought popped in my head '3000 people? And 1 person can save upto 7 lives?! That's alot of lives saved!' The journo asked for a few comments and said they would run another article over Christmas to report the response. And sure enough on Dec 29th I was again on the frontpage here. That cheered me up alot but to hear that Jessica Wales received her lungs after over 4yrs of waiting cheered me up more. A couple of days before my article came out I saw on facebook that Jess had taken a turn for the worse, in no uncertain terms when your ill enough to be on the transplant list that often spells out that time is up. Knowing this I texted a couple of friends trying to find out exactly what was going on and received details that that was in fact the case. Jess was clearly out of time and I thought it was more than likely within the next day or so I'd probably get a message saying time was up and Jess had passed away. But a few hrs after hearing Jess was critical rumours started to fly around facebook that she had had a call and it was a go. Just after midnight on Dec 28th it was confirmed Jess was in fact in theatre getting new lungs. The feeling of relief was over whelming. Of course not forgetting the donor family, they have lost a loved one over the Christmas period and during that time have been selfless enough to think of others and agree to organ donation and because of this Jess' life and probably the lives of a few others have been saved. Jess was so poorly going into transplant so there's no doubt her recovery will be lengthy and probably a little complicated, it's early days but Jess has been given her 2nd chance, at last. Jess' friends handled how ill she was and documented details about her transplant so well that it spurred me on to do my final part of planning which I'd been meaning to do for a while. My group on facebook, Rachael Wakefield's Transplant Plea has a following of over 8000 people now and is not really used anymore so I've made a couple of close friends admins and they're going to update the group for me when I can't because I'm hopefully getting new lungs. The group, twitter and my blog will be updated by friends and will be the most upto date forms of news. I will (situation permitting) update right until I go to theatre then my phone will be switched off until I'm able to use it. Mum will contact 3 close friends with updates and they will keep on top of facebook, twitter and blog. Now those final plans are laid hopefully it won't be too long before they are put into practice.
New Year's Eve was manic so more on that later.

long week

2009-12-18T17:20:00.000-08:00

What a week I've had! When people say to me "what do you do to occupy yourself? You must get bored?" Ha! Chance would be a fine thing! So I'll start from last week.
Last Thursday as usual I went to the hospice, felt perfectly fine in the morning had some reflexology, had my NIV all set up beside me and was comfortable. By mid afternoon I got a strange feeling, I had palpitations, my heart felt like it was racing and I felt sick and tired. The hospice doctor prescribed some extra diazepam and said it'd probably pass. We waited it out for 5hrs before I was finally sent to a very busy, very noisy A&E. In A&E everything looked fine so I decided I was safer at home and signed myself out. I contacted my consultant the next day and arranged to see him the following Tuesday. That day I went to a support meeting at my transplant unit. Fantastic idea, they allow pre and post transplant patients to get together, share thoughts, ideas and tips on surviving (quite literally) transplant. It was a quiet meeting with just a few of us one very inspirational post transplant patient and I did also meet one lady, Ruth who was pre transplant, waiting 16mths. She mentioned the new start Christmas party that was taking place the next day at the hospital. I knew nothing about it so she pointed us in the direction of J's. J is lively, bubbly and lovely. She works in the new start office at wythenshawe and from what we could gather works hard! She sold us some tickets for the party for the next day.
I didn't really know what to expect, J had said she would introduce us to Sky and her family. By chance I suppose, Sky was leaving the ITU whilst I was being admitted for my transplant assessment back in August, she is the 16yr old girl I spoke of back then. She is now 5mths post heart transplant, in 9mths she's gone from feeling a bit poorly with a stomach upset to having an ultrasound scan and medics stumbling across her very diseased, failing heart, to urgently needing a heart transplant which she got within 4 days of being listed. There is only one word to sum up that story, amazing! Sky was inspirational and we got some pics together.

Pics with Sky

Also my surgeon (hopefully) was there and consultant. It was strange to see them as 'people' in normal clothes outside of their medical roll. It reminds you that at the end of the day, underneath the stethoscope there's actually a person under there. In the past I have not had the best relationship with my consultant and many of the staff at the hospital for that matter but now it almost feels as it should do and for that I couldn't feel more thankful and well, lucky. It was a good day I got a few snaps and it was great to meet staff and patients involved with newstart and transplant. People, mainly high up in the charity, were coming over wishing me good luck. You know you’re famous when people know you but you don't know them!

Handing a cheque to the chair of new start (right) and J (left)

I exchanged numbers with Ruth, we agreed to call each other if we got calls and I agreed to find Sky on facebook. A day later, around 7pm in the evening I got a call from Ruth. They had lungs for her, at that moment I grabbed my transplant phone, Ruth said they were calling in reserves incase she couldn't have it. At the thought I shivered. I sat thinking of her most of the night and wondering what I'd do if it was me now? It made it all hit home a little and gave me the push I needed to at least sort out my transplant bag! Unfortunately for Ruth the transplant didn't go ahead and at around 10.30pm she called back and told me about it, the lungs were in good condition but her antibodies were not compatible, I can't imagine how disappointing that must be. Fair enough if it's determined that your not a good match, or the lungs aren't good enough but to hear they are good and you were good match must be heart breaking. The day afterwards she just simply said "I keep thinking I could be transplanted by now :-("
On Tuesday I went to see my consultant. I wasn't looking forward to seeing him so much, I knew what was coming. I have gone downhill some what in the last couple of weeks. I've gone from needing NIV a few hrs over night to plus a few hrs in the day, to most of the day, to all day. It's a worrying trend that I don't like. He didn't have much to add just to highlight I need some lungs now and we're getting pushed for time. He promised he'd write to my transplant consultant and make sure he knew what was happening. I cried that day.
I will write about Wednesday’s ventures when I have pictures up, that was an exciting day.
Thursday I relaxed at day hospice and yesterday I went to the hospice party. The staff always bend over backwards to make it enjoyable and this year was no exception. Tinged with sadness as I gazed in the direction I sat last year with friend W who died of breast cancer this year. Remembering her family, her husband and three children that will be spending their first Christmas without her this year. There were laughs though too as always and I laughed (NIV permitting) until I had tears in my eyes and my cough forced me to stop. The hospice have seen me through some of the lowest and highest points of my life in the last 12mths and I gave them a special Christmas present also but more about that later when the article is online!
All in all a busy week so for those of you that think I lounge around doing nothing there you go!

Just breathe

2009-12-08T15:39:00.001-08:00

Something I always wanted to do when on the transplant list I got the chance to do last week. The day after I was listed Sarah Milne from the charity LLTGL wrote a press release and my story went down pretty well. Being able to raise the profile of organ donation via the media for me gives me a focus, it gives me a voice when there's nothing to say or do but wait. For me it keeps my mind busy and if I'm honest it takes my mind of what's really happening to me and what I'm facing.
On Thursday at day hospice when the media hype had died down a little I was left to my thoughts and feelings I'd blocked out both physically and emotionally. The fact is over the last week or so I've been more unwell, I've tried to ignore it but by that point the fact that I was knocking back 20mls of morphine in one go so I wasn't in tears with carbon dioxide headaches was being questioned. I talked to a hospice nurse and we both agreed it couldn't be anything other than carbon dioxide. An appointment with an NIV nurse today confirmed this. This meaning either A) my VPAP was broken or B) my lungs had deteriorated and were less able than before to do their job. We figured seen as there was nothing to point to the VPAP not working it was the latter. I have occasionally used NIV in the day but it wasn't a complusory thing and I would just use it in the day if I felt a bit under the weather.
Since the day I went on NIV I always said it would never restrict me, I would not be stuck on an NIV in the house for the majority of the day watching life pass me by, over my dead body. Now I've arrived at that point, I'm dependent on NIV more than I ever have been before, to at least keep pain free and feel 'normal' I need to be on it 15-20hrs a day. Carbon dioxide headaches are not something you can ignore as much as you think you'd be able to in a 'oh its only a headache!' style, they bring you crashing down to earth, at times I have fallen to my knees had in my hands screaming and crying. High carbon dioxide affects everything, concentration, energy, memory even down to physical appearance.
So what am I supposed to do now? I need to stay alive and wait for these lungs and that, now, involves alot of time on a ventilator but how can I sit back and watch the world outside my window carry on without me? leaving me behind.
I always wondered, would I get on the transplant list and just think 'ah at last, the battle is over' and as soon as I think that would I physically give up before I got to where I wanted to be? Which as gruesome as it sounds, is an operating table.
The fact is this latest blow has hit me hard, of course I saw it coming, anyone with a progressive disease on NIV sees it coming but how do you prepare for the fact that for the majority of the day, for the majority of your life here and now you can't even breathe for yourself?

normal conversations...

2009-11-26T17:56:00.000-08:00

Tonight I talked to someone on instant messenger, although we've met on a couple of occasions we don't know each other that well and very rarely talk. He is a normal 20something guy going about a normal life, the conversation is pretty self explanatory, to me it was eye opening as to just what 'being normal' is and how important it is to get the message across about organ donation. I'll leave you with conversation we had:

P says: ahhhh cool erm where do you actually fill in the forms for being an organ donor?
Rachy says: I take it that means you aren't on the organ donor register then?
Rachy says: http://www.organdonation.nhs.uk/ukt/default.jsp
P says: not yet been thinking of going on to it for a while now but was busy with job hunting
Rachy says: whilst your busy job hunting the hospital are busy trying to find me an organ donor in time to save my life, just think about that one?
P says: opps my bad major guilt trip
Rachy says: I'm sorry it wasn't intended as a guilt trip, organ donation is a personal choice
P says: its ok, no worries I'm not guilt tripped to be honest because I know there's a few people out there who don't even consider signing up
Rachy says: 96% would if they could just get round to it, imagine if they or you were in my position, I'd bet if you needed an organ to save your life you'd accept one but would you take the time to sign up to give one? it seems the answer to that is already obvious doesn't it? *gets off soap box*
P says: Yeh, I see your point now, I'm in the middle of signing up
Rachy says:
:)

I did it!

2009-11-25T09:40:00.000-08:00

Well I've waited quite along time to write this blog and now I have no idea how to word it?

I did it? I made it onto the transplant list, I'm now active on the transplant list waiting for a double lung transplant. It doesn't even seem real to type that, I don't think it's actually sunk in yet, that I will actually get new lungs and I will live. That is if a donor is found for me in time.

My news came yesterday afternoon after a tearful morning. I discovered that one of my friends Joanne had passed away in the night, Jo was on the transplant list waiting for lungs. She had had a tough time getting listed herself , I supported her through that. Just a few hours after discovering she had passed away I went active on the transplant list, life at times puzzles me so much.So off I went to clinic yesterday, we got there early and stopped in the cafe for a coffee then almost got lost in the corridors trying to find our way to clinic. My co-ordinator was hanging around in the waiting room, I don't actually get to see her that much, she doesn't do my consultant's clinic that often so it was nice to catch up with her I asked if my tissue typing was back and she said it was. It was at that point the penny dropped and I thought 'oh god, there is actually nothing stopping me going on the list now...' But I put it out of my mind and got talking to a lady beside me who had Alpha 1. She had been on the list 2yrs already.

I went in to see my consultant and he went through last minute details mentioning my gallstones could be due to weightloss and so on. But that there was no inflammation in my gall bladder and it looked ok, I did, if I admit, zone out a bit, as a watched the goings on out of the window a stark comment brought me back to my chair "shall we just do it then? Shall we go for it and get you on the list? stop dragging our feet ah?" before I could collect myself to think of a sensible reply I just raised my eyebrows and simply said "erm yes please?" and that was that. The appointment was no longer than 10minutes, I bumped into my co-ordinator in the corridor and she shouted "Rachael?" and put her thumbs up and I nodded and put mine up. The co-ordinator that was in with us took my 'transplant line' number. I have put an unused sim card into an old phone and I'm reserving that number just for transplant calls. Just so I don't jump everytime there's an unknown number flashes up on my phone!
Which at the moment is happening alot because the lovely Sarah Milne kick started the LLTGL Christmas appeal today with a press release on my story (click here to view it). My mobile has been ringing off the hook! The MEN have snapped up my story and are coming round for a photoshoot tomorrow.
So that is it now, now I wait, wait for a donor, for a hero to save my life. My story is now also on the LLTGL website, go have a look here. If you sign up to the organ donor register you could be my hero so go sign up here!

I'll leave you with a picture that Sammi took last week during the photoshoot, many more to come.

Crazy life!

2009-11-12T14:53:00.000-08:00

My life at the moment seems to be all or nothing. Literally for the past week I have sat twiddling my thumbs doing nothing, then the last couple of days it seemed to all come at once.
Yesterday I called the transplant co-ordinators to check they had my ex-vivo consent forms and also for a bit of a catch up. No sign of my blood/tissue typing results yet, I can't go on the transplant list, officially until they come back. I've been waiting 3 weeks now. Whilst on the phone I asked for the number for the transplant dietician. I met her during my assessment and she had alot of understanding. I have struggled with my appetite for the past couple of weeks, then to top it off I caught a sickness bug last weekend and wasn't even able to keep fluids down properly for a couple of days. That combined with pretty poor intake as it is has meant I've dropped another 7lb that I didn't really have to drop in the first place and haven't bee able to regain. Being a bit on the small side is something very new to me, as a child I was always a good weight then as a teen I went on prednisolone and well from that point on there was never any worries about me being underweight (those on prednisolone will know what I mean ;-)
I had a chat with the dietician anyway and she advised going to my GP for better anti sickness medication. But it isn't just sickness and nausea that are the problem, after I've eaten pretty much anything now I feel bloated and unable to catch my breath, it is a battle at the moment and it isn't one I ever anticipated. And 'little and often' really is of no use to me.
So following my chat with the dietician I got a call today from the co-ordinators, my consultant now wants to see me ASAP before I go on the transplant list, I have an appointment for about 10 days time. Hopefully around that time my blood results should be in as well. So that didn't worry me too much, the part where she said "to check your well enough for transplant now" did. Weightloss in ILD is a sign of progression. I can't not be well enough to be listed for a transplant, I've come too far so I intend on doing something about it. I put as much effort in as I can into eating and it's getting me nowhere alone, it just isn't easy anymore and it's not even something that comes natural, I see food now like medicine, something I have to take but there's no enjoyment in taking it, my lung disease has taken that enjoyment away. So now I'm seriously looking into nasogastric feeds as an option, they could run overnight whilst I’m on my bipap and breathing wouldn't be so hard then. If anyone has any info about this I'd appreciate it.

Next week, hopefully, I have a photoshoot at the hospice with the beautiful Sammi Sparke for her photography degree. For some reason she thinks my mug shots will win her a prize haha!

I've also agreed to do a media feature at some point in the next week for the charity Breathe On UK. With the case of baby RB being all over the media this week Breathe On have had alot of coverage, they support families affected by long term ventilation. So watch this space.

On Wednesday I also have a CT scan to get to the bottom of these lung bleeds which are yet to subside.

Thursday, I have day hospice, I've been helping out with the St Christopher project there, which came about at the hospice thanks to a lovely lady who I was great friends with (click here and she's mentioned at the bottom of this blog along with why the St Christopher project is vital to school children) she passed away just a couple of months ago. Basically the project myth busts over what hospices are actually for. And tries to get the message across to the public that they are actually a place of life.

Busy times ahead!

2009-11-05T19:51:00.000-08:00

This week saw the launch of the powerful new campaign by NHS blood and transplant in bid to highlight the need to act on good intentions.
''The campaign aims to increase significantly the number of people on the organ donor register, asking what we would do if someone we love needed an organ: if we would accept an organ, shouldn't we be prepared to give one?'
More to come later, for now I shall leave you with the very powerful advert which we should be seeing more of on TVs soon.
Link to YouTube.

2009-10-23T15:16:00.000-07:00

What a rollercoaster the last few days have been. I had the pleasure of meeting my surgeon on Wednesday at transplant clinic. Great man, in the respect that he does actually save lives, with organ donation, yet he does not come across as thinking he is some god, which is a fatal mistake of some doctors in my opinion...
I sat in the waiting room wrapping my oxygen tubing round my fingers, a bag of nerves. After a while one of the co-ordinators came out with my consent forms which she asked me to sign to which I replied "what? Now?!" and I signed.
She came back out and led us through to a room with several people in it, two students that were interested in the field of transplant, the consultant anaesthetist, the surgeon, she took a seat and my parents sat beside me and the room wasn't actually that big! The appointment was over an hour long. The surgeon went over the basics of the procedure, what was important pre transplant, survival rates, post transplant complications. He stressed how important keeping physically mobile was to recovery, survival rates increase by over 50% if your able to do at least something every day, even if its just pottering round the house and next week I'm going to talk to a local physiotherapist and see if I can get access to pulmonary rehab. I got a sense of 'this is going to be no walk in the park, this is big...' and I've never felt like that before. I've focused so long to actually stay alive long enough to make the list I don't think I'd appreciated, fully, what being on the list actually meant.
Survival rates, I knew roughly but to have them directed at you face to face is a bit shocking, on average 50% of double lung transplant (bilateral) patients are alive in 5yrs, for single lungs its slightly less at 46%. Those are averages, no one can say for sure how long a transplant will actually last and they have patients celebrating their 18th, 19th and some 20th years post transplant. Only 10% don't make it through the actual operation and post op period, which when you consider how big the procedure actually is and whats involved that is a good figure. They can't say how long you'll be in hospital because no one can for see what complications there could be, 3wks is the minimum.
There is a whole host of post transplant complications which he went through but the basic things I needed to know we're weight control post transplant is very important, the medication can make you gain weight, they do not have enough data for post lung transplant but they know in heart transplant patients that if the BMI goes over 30 75% do not even make it beyond 2yrs. That, to me, is shocking, it really does make that much of a difference. And antirejection drugs. Without those he explained, you don't breathe, they are the reason you keep breathing post transplant, they come before anything else in your life, even food and drink. You must not miss a single dose, the immune system can be switched back on very quickly and if you miss doses rejection starts to take place almost straight away. I could not ever be imcompliant post transplant, I would feel too guilty on the donor family, the transplant team and my parents and family that are going to see me through this. We then discussed the pros and cons of bilateral then single lung. Basically bilaterals are harder to come by, I am small framed now, the size has to be 100% perfect or the lungs won't fit, I'm 5'4 and a size 6, my donor would have to be my size or smaller, I'm hoping that isn't as difficult as it sounds. Bilateral means the wait will be longer because of the sizing and the fact that sometimes one donor lung is good and another isn't for whatever reason, the operation will be bigger and longer, the recovery will be harder and longer but the survival rates are better. Single means the size doesn't have to be perfect so the wait is shorter, they're easier to come by, the op is shorter so it's easier to recover from but the survival rates aren't as good. On Wednesday he was undecided about which was our best option and said it was up for discussion in a meeting to be held yesterday. The surgeon said he can only advice on what he believed was best and if I came back to them and said it had to be one or the other they would be guided by me, he explained it was my lungs, my op, my call, my life. I'm not used to being able to have so much of a say in things. I talked to alot of online friends that are on the transplant list (thanks to those that listened to me waffle and ask questions!) and waited for some feedback from the meeting. The team decided bilateral was our best option, I'm young for a lung transplant patient at a smaller centre, the survival rates are better and due to the fact I don't have a 100% accurate diagnosis it's a safer option. Blood was taken and when tissue typing and antibody screening is done I will go active on the transplant list, this will take anything from 3-6wks. In the hope that it may shorten my wait for a match I have decided to sign up for the ex vivo/lung reconditioning study. I will talk a bit more about that in my next blog.
Thankyou to everyone that's supported me over the last 12mths, I couldn't have done it without you :-)

2009-10-16T16:52:00.000-07:00

I am learning all the time, sometimes even when I don't realise it. The lessons I learn are sometimes hard to swallow, they don't always come in the easiest form but the hardest lessons I learn are the most valuable one's. A comment, or a few recently from a post transplant patient made me sit back and think for a second and if I'm honest upset me more than I even realised. They made me question if what I was doing by going down the road of transplant was actually the right one. After a chat with other post transplant patients I'm now left wondering why I let those comments get to me so much. They taught me a lesson, they taught me I love life and always will, it may not always be easy but it is worth every second. Transplant may not be the right thing for everyone, its a personal choice, my mind is made up, I want to get better, I want to live, if it that means having a transplant then so be it. I will tackle it like I do with everything else that life throws at me, to the best of my ability, I will never take one single breath for granted because I know I'm lucky, every day I wake upto is a bonus.
My transplant co-ordinator called this morning. They have a multidisciplinary meeting once a week, involving surgeons, co-ordinators and my consultant, it took place this morning and by the sounds of it my case was the topic of conversation. I called earlier in the week for an update and was told my case was being discussed today and that if the surgeons are happy I will be sent an appointment to see them. When I asked how long this would take I was told 4-6wks, I was a little bit deflated but happy to know this. So this morning after the meeting my co-ordinator called, the surgical director and head of the transplant program wants to see me on Wednesday. My co-ordinator seemed keen to state that at this point it is still an 'if' I go on the list situation as ultimately the decision lies with the surgeons. The paperwork which I'm required to sign should the surgeon agree to transplant has been sent to me in the post, this will then be sent to Transplant UK and they will contact us when I go active on the transplant list. My consultant as promised has fast tracked my case and I haven't had to wait to see the surgeons. I'm told he will spend about an hour talking with us, discussing the surgical details of the procedure, potential problems and will answer questions which I must get writing down. I am quite looking forward to meeting the surgeons, even if at this point it is a no (everything looks good, everyone is confident, I've got this far but it's still a possibility) and hearing the details of transplant, people seem believe its a case of old lungs out, new lungs in but I'm inclined to think it must be a little more complicated than that!
Any positive thoughts would be greatly appreciated :-)

2009-10-11T13:09:00.000-07:00

Time for a catch up. The infection I talked about in my other blog got worse and I gave up and went in hospital for IVs. I pushed it and pushed it though and before I knew it a week had passed since my clinic appointment. I was so very worried about the blood results, I'm terrible for over assessing things and worrying. The thought of potentially having to go through the process of seeing kidney doctors and haematology before transplant could be reconsidered was terrifying. Even though my doctor promised he would rush it through if that was the case it would still take months, I knew that. I became very down through worrying, then on the Friday before I was due to call for the blood results on the Monday something arrived in the post. I hadn't ordered anything so I didn't know what it could be. I opened the envelope and there in 2 neat little bags were 2 bracelets, no note and no explanation. Then I realised what they were and my eyes filled with tears. A friend of mine who was awaiting a lung transplant passed away on April 6th after a long battle with cystic fibrosis. Before she died and whilst very unwell she started making bracelets to raise money for the CF trust. I ordered the bracelets March 21st and after not receiving them and then hearing the worst a few days later I presumed she hadn't had time to make them and that was ok, my donation had gone to the CF trust and was now part of her memory, I didn't expect to receive them. Suzy always spoke so warmly of the NHS and the treatment she received from her CF team, she sympathised with my struggles with doctors and my fight for life whilst I was in the hospice. I like to think the bracelets just arriving out of the blue like they did were her way of saying it WILL be ok. Later that day I went into hospital to start IV antibiotics.
On the Monday I phoned the transplant co-ordinators, my co-ordinator answered the phone and she brought up my results on the system. Both blood results came back within normal limits, no further intervention was going to be needed. That was the boost I needed having spent a difficult weekend in hospital. My case was to be discussed at their weekly meeting on Friday and things would go from there.
That week in hospital was not easy and to make thing worse, my NIPPY which I had been relying on almost 24/7 because I had an infection overheated and broke. I should have seen it coming, NIPPY ventilators are old, noisy and recently it had been stated that mine was not fit for it's job anymore, it was providing enough support. After a few hours of being off it I felt the affects my carbon dioxide starting to raise. The doctors began to worry and asked the physiotherapists to see me to try and help me clear my lungs. The consultant physio who I know well came to see me. She knows the situation and sorted me out with a hospital non-invasive ventilator (NIV), lucky for me the NIV service had been set up just a week ago, if I wasn't able to have NIV on the ward eventually I would have had to have gone to the high dependency unit. The NIV I was set up with was called VPAP (click for explanation!). It was so much better than my NIPPY and helped a great deal. My consultant contacted the regional NIV centre (which also happens to be my transplant hospital) to ask them to sort me out with a new NIV.

On VPAP with my quilt

Whilst all this was happening I received a very special gift from a company called quilts for adults USA. They had been working on my quilt for months and it arrived whilst I was in hospital I snuggled up to the quilt and imagined it as a big hug! It includes cross stitched squares of my favourite things.
A week or so later I was fit enough to travel to chest clinic and meet the NIV team, I have met the doctor before, under different circumstances which I'm not going to go into here but he had a look at my blood gases and we had a chat. I had been off the VPAP for 3 hrs and my carbon dioxide levels had already risen. He was happy to set me up with one of their VPAP machines, he adjusted the settings a little and asked me to do overnight pulse oximetery to check the settings were ok. I was so relieved, VPAP,is smaller, quieter, portable and now I have an expert NIV team on my doorstep, I couldn't be more grateful. I returned to the ward at my local hospital with the VPAP, decided seen as my IVs had stopped and I was able to use the VPAP I had been using on the ward at home I was ok to go, I ok'ed this with my consultant who was happy. I called the co-ordinators to let them know I was home and asked for an update. My consultant had spoken with the surgeons, their happy for things to go ahead, pleased with the blood results, don't see the need for a total lung capacity and they're now waiting on my consultants’ referral. Once that is written I'll go and see the surgical director and hopefully be offered a place on the list. For the moment I'm on strict rest due to a couple of lung bleeds, will update again soon.

Transplant update (long one!)

2009-09-23T14:50:00.000-07:00

Well despite some worries that I may need some IV antibiotics I made it to transplant clinic yesterday. I've never seen so many patients on oxygen in one place, obviously I knew there were going to be patients there in similar positions to me but it made me feel slightly less 'unique'. I over heard some of the conversations, unfortunately I wasn't in the waiting room long enough to actually join in (which is unusual!). A patient opposite me (I had read this article about him some months ago but he looked so well I didn't even know it was him) was telling another patient he received his lung on christmas day 2008, after 11 false alarms! 11!
Not so long after my consultant called us in, we got seated and he began to run through some of the assessment results. Based on the information they have obtained about my lungs he is as sure as he can be that a lung transplant is now our best option. He spoke positively and admitted he was very keen in light of a couple of the results to get me on the lung transplant list as soon as possible. I may have waited a while for the assessment results but that time has given my doctor time to talk to my London team about my results and about what is going on in my lungs in general. The assessment has given them confidence that they're doing the right thing by me. But, there are a couple of buts. A couple of my blood results came back abnormal. One of my clotting factors came back low. If this is low the risk of excessive bleeding during transplant is increased which with such a huge procedure could be a problem. The condition can be genetic but has never been picked up before so I had more blood taken and we're hoping, as is sometimes the case the result was just a bit out. It isn't impossible to transplant with such a condition but the opinion of haematology alot of caution is needed. My consultant reassured me they did a lung transplant on a patient just last week with a more complex clotting condition and the surgeons were able to replace the missing factor during the transplant and the patient continues to do well. Also my creatinine clearance came back high. Creatinine clearance is global kidney function, the higher the level the less efficient the kidneys are at cleaning the blood. Kidney function for transplant is vital, the anti-rejection drugs post transplant can hit the kidneys hard and because of this it isn't unheard of for transplant patients to later need kidney transplants. He advised me poor kidney function can be treated with dialysis but in the transplant recovery period this isn't ideal. Again this has never been a problem for me and no signs of a decline in kidney function have ever been spotted. I had more blood taken to check this as during the assessment when my blood was taken I was nil by mouth waiting to go to theatre for the RHC and was probably dehydrated so we're hoping it was just that. I have to call the co-ordinators Monday and check the results. If this time they're normal my case will be passed to Dr Yonan and I will be offered a place on the list. If they're the same discussions between the surgeons, haematology and the renal team will need to take place and I may need to see both teams for further investigations. Overall my consultant was very positive that at some point I will get on the transplant list, he praised me for my hard work, the amount of hoops I've had to jump through to get where I am and told me I had been through more than enough. This time last year our doctor-patient relationship was none existent so I was a little taken a back by the praise but I'm now thankful my hard work to get where I am and just stay alive is being acknowledged by the right people.

Late night rambles

2009-09-19T16:58:00.000-07:00

After the shocker of a bad few days last week, I finally gathered from my lungs it is infact infection. I was happy about this, why? Well because infection is something that can get better and go away, it isn't just my lungs deteriorating, it is infection that is 'fixable'. I'm on lovely big doses of antibiotics at the moment and coughing green gunk with every bit of energy I have but I am getting there. And I managed to fit in an awesome few days away on a spa break last week. It was at times hard work, ok so sitting around in a spa for a few days may not seem like it but I do have less than 15% lung function now, just the sight of a flight of stairs makes my toes curl up. But it was so worth it. It gave me much needed head space to get things into prospective. I looked out over the balcony in the spa and just felt relief, I felt lucky, I felt lucky to be me, to be where I am and to lucky I'm still here.
It amazes me in the face of so much adversity, facing so much uncertainty only then do we really appreciate who are, what we have and in my case what I'm still able to do. And it was then I thought 'if I don't make this transplant list then I was never meant to and I can accept that now'. 12 months ago I didn't even come close to accepting that.
Fact is I've learned to love my life, it may not be perfect but it is my life and it is the best I can make it. Being offered a chance at transplant would be amazing but I think I can accept it now if I don't get the opportunity to go on the list.
Tonight my thoughts turn to Jessica Wales. She's been waiting for new lungs for 4yrs, 4yrs too long.

The machine currently keeping Jessica alive...

The prospect of losing Jessica because she can't hold on any longer for a donor horrifies me, the fact she's held on for 4yrs already horrifies me even more and to think her wait could now well be in vain is just horrible. The fact that I could also be potentially facing this myself, well I think I would need tips on how to cope because I don't know how I would, my mind is yet to even get that far ahead. Nobody deserves to wait that long for an organ donor, someone to give their organs after their death when they're no longer alive and no longer need them. Not difficult really is it? The really sad thing? Jessica is one of many desperate for a transplant tonight, why would you not want some good to come out of the bad? Why would you not want to give someone (or more than one person in many cases) the chance to live after you've died? Would you not want someone to do the same for you? Nobody likes talking about dying but I believe facing upto our fears makes us more human. Think about it, talk about it, do something about it.

2009-09-13T16:28:00.000-07:00

It takes alot to scare me now. Having been through what I've been through. Right now I'm scared. My mentality, with transplant in particular has always been 'hold on a bit longer and you'll get there, just a bit longer to the next appointment'. I'm so stubborn that that has not failed me yet. As silly as it may sound, seen as I was given just days to live in a hospice exactly 12mths ago its only recently that I've really realised that its going to take more than my stubborn mind set to keep me alive. And that as much as I desperately want to cling onto life and the chance of a transplant my body might just fail me before that's possible. Right now things are bad, I'm determined I will not fall before this (hopefully) final hurdle. I'm not religious but I talked to a family member recently that is and since then I've been praying, I don't quite know to who or what, just praying. Please keep everything crossed that my clinic appointment on the 22nd goes well.

Pics

2009-08-27T15:41:00.001-07:00

It's times like these that make me appreciate my life and help me to realise just how special it really is.

On Monday I'm going away to spend time with my family in Wales, I'm looking forward to the break and spending time with the people I love.

News

2009-08-19T04:45:00.000-07:00

So there's news. It was what I expected I guess, Pre Transplant clinic 22nd September. It just puzzles me where 'urgent' comes into that. I understand its holidays, everybody is away and it's a multidisciplinary meeting, involving co-ordinators, dieticians, social worker, physiotherapy, my consultant, so everyone has to be gathered together. Alot of people will say "wow 4wks to wait for an appointment is nothing". But it will be a year since I was in the hospice where I was given just days to live. I don't have the luxury of being able to wait around for 4, 5, 6wk appointments anymore. I've waited upto 8mths before for appointments and there was no way around that and I just had to wait and that was that and it looks like this is the same. I have done my fair share of waiting and I understand why you have to and I'm not an impatient about it, I just know that time isn't on my side anymore and should I get listed I could be in for a anything upto 4yrs wait for a donor so I'm conscious of that also. 4wks is the best, the earliest they can do, I accept that and I will wait, you know what they say about good things?...
I think my mum was more upset about it than I was. We had expected earlier but I had been told it would be weeks before we hear anything so I had braced myself for around the 8wk mark. I think more than anything I'm just grateful I know when it's going to be and knowing that things are happening without me having to poke the stick. Something I've always done and something I believe in the NHS that at times saves you from being just another file they brush to one side. Also the plan had been to see the surgeons after the review in clinic so I may not actually go active (provided there's no medical reason I shouldn't) until after I've seen them. If it's a yes I can go on the list that is, we don't know for sure because the results are still being collected from the assessment. And then I will have to wait for another 6wks+ to see the surgeons, to do chest measurements and final paperwork etc.
So there you have it. I could be looking at another 12 or so weeks for everything to actually be tied up and done with.

Waiting to wait...

2009-08-16T10:05:00.000-07:00

As the title says, I spend my life waiting. Right now I'm waiting for the results of the assessment to come through which ended now well over 10 days ago. The story of my life! Then I'll have to wait to see the team in clinic for a discussion of the results and hopefully an answer.
I have a few things going on at the moment and I'm overly, stupidly tired. I haven't been able to keep up with physio not because I'm too out of breath just because I haven't got the energy. I have never felt fatigue like it but I think its just of those things that comes in the package. I am waiting (yes also) for a referral to the regional non-invasive ventilator (NIV) team to go through because the NIV I use is over 15yrs old, sounds like a helicopter and just isn't upto scratch anymore, its so old that nobody knows what to do with it or how the settings work. I have been getting the distinct morning headaches and nothing compares, I think overall my symptoms would decrease a great deal if I was getting a good nights sleep on an NIV that was doing its job affectively but I'm not... This could also be the cause of how stupidly tired I've been of late.
I've also had a case of sinusitis (we think) that's lasted weeks. It was so bad at one point I was hitting my head against the wall and clenching my teeth. I've been popping Sudafed like smarties. When I went into hospital the transplant team put me on strong antibiotics for MRSA. Rifampicin and Trimethoprim, I'd been taking Ciprofloxacin at home for a few days but it hadn't really had any affect and if it's MRSA it wouldn't have, I guess I was hoping it would be a simple infection. I've had MRSA for many years now and never been clear of it since I caught it, the sinusitis is still there a little but is alot better so I'm starting to wonder now if I have it in my sinuses. It's in my nose, throat and has been grown in my lungs before so it wouldn't be surprising if it was. I may talk to the transplant team about staying on the antibiotics a bit longer because they have definetely helped. I also have some crap going on with a previously MRSA infected finger right now as well but thats another story. So that's my life right now, in terms of how long I'm going to be waiting for the transplant assessment results I really don't know, the blood results should be back this week then I have to wait to see the team so we can have a chat and decide...

2009-08-10T12:30:00.000-07:00

Reading the 'lung transplant patient information booklet' given to me by a co-ordinator

Well I finished my assessment Thursday and was discharged afterwards. I had 3 tests on Thursday, lung CT scan with dye, an abdominal ultra sound and an oxygen study. I didn't hear anything about the lung CT because a radiographer will have to have a look at it but the abdo ultrasound I got to see on screen. The doctor doing the ultrasound was nice and pointed everything out to me and then said "ah, you have gallstones!"
"What?! Seriously?" The student nurse that was accompanying me to my tests that afternoon jumped up out of her chair for a look. The doctor pointed out the tiny white masses on the screen and explained they were gallstones and there were a few of them. I panicked and asked "will they affect the transplant?!" I was reassured no but it was something my doctors had to be aware of and was told 80% of people with gallstones don't even know they have them. That came as a bit of a shocker, I wasn't expecting anything out of the ordinary to come back on an abdo ultrasound, it was the least of my worries! To my relief everything else looked normal.
Next I went to lung function for an oxygen study, the oxygen nurse took one look at me and said "errr yeah how far can you walk?" I told her roughly and she took a blood gas from my ear based on the results she said that was all she needed to do and I could go back to the ward... I was expecting the oxygen study to be difficult and it was far from it.
Later that afternoon, once back on the ward I saw the transplant dietician, very understanding, very nice woman. I told her what an average days food was for me and she was concerned over protein. Protein is one of the main things post transplant that patients need to rebuild muscles and gain strength and its one of the main things my diet is missing. She checked my protein stores using a small hand held device and said despite not getting much from my diet my stores were good, she took note of this and said post transplant I may have to stay on protein shakes a bit longer than their average patients because I don't get enough of it from my diet but that's no problem. She told me to watch my weight and warned if it got any lower I'd need to consider nasal gastric feeds, I've had them before and considered they maybe in my future so I wasn't surprised by this.
That evening I was discharged. Now once again I wait...

2009-08-05T13:11:00.000-07:00

The above picture was how I started my day at 6am... I'm not a morning person and by the time breakfast came at 8am I couldn't stomach it and was whisked off for a chest and mouth xray anyway. Soon after a surgeon in blue ITU scrubs came and introduced himself. He worked for my consultant and came to explain the RHC that he'd be doing. I asked a couple of questions and consented. He explained I'd have to lie flat for a while and asked how I was with that, I don't do completely flat on my back very well so he asked me to take my NIV with me to theatre. I was nervous to the point of shaking in theatre, the staff were fantastic though and really put me at ease, they put on some cheesy music and talked me through everything they were doing. The only painful part of the procedure was the local anaesthetic being injected into my groin, I've had local more times than I can even remember and it's one of those things you grit your teeth through knowing it'll be over in a few seconds. Once that was done with the line was inserted and threaded up a large vein and into my heart. I could feel a few strange sensations in my chest and back then when it reached my heart it caused a few extra beats which I could feel. The line fed data about the pressures in my heart back to a computer and after a few minutes it was over. I had got myself worked up over nothing and if I had to go through it again it wouldn't bother me in the slightest. I had to lie flat on my back throughout and then for an hour when I got back to the ward.
Not too long afterwards the transplant physio came for a chat. She went through what her role would be post transplant how important exercise and mobility are post transplant and what I can do pre transplant to ensure I go into the operation in the best possible shape. She explained people that do exercise pre transplant recover more quickly post transplant. Exercise has a huge impact on recovery, it can make the difference of a recovery that takes a few weeks to a recovery that takes a few months. Despite my failing lungs exercise is something I enjoy doing, I can't do all that much to help myself but exercise is one of the things I can do to help myself so I make sure I do it. If I want to walk somewhere or do something for myself it may take me a while and I may have to stop and rest but I make damn sure I do it in the end. The physio was impressed by my attitude towards this and left me with a few simple exercises I can do to keep my muscles strong. Later the co-ordinator came back to see me, she went over a few last details, what tests I'd already had and what I needed and explained they'd gather the results from this week and present them to my consultant on this coming Tuesday, based on them he will either see me in clinic and explain why I can't be transplanted or pass my case to the transplant surgeons...

The gift of life

2009-08-04T15:29:00.000-07:00

Well Monday was a busy day. My mum called the transplant unit and they still had no beds. I was pretty upset by this point and just wanted the assessment I had been promised. I had lung function at 11am so they told us to bring a bag incase a bed was free afterwards but it wasn't looking likely. They had a 16yr old girl who had had a heart transplant ready to leave the transplant (tx) ITU and she needed a side room.
So we could get there in good time we left the house pretty early, I was tired and in a bad mood. Not a good combination. I tried my best at lung function but the machines were giving a poor picture so for a few of the tests I was taken off the larger machines and put on an old style smaller machine on wheels. I then had blood taken from my ear to check my blood oxygen levels, they turned out to be very poor on my 8litres of oxygen so I was also a bit upset with that. After I'd done lung function they called the transplant unit to find out if a bed had come up and if I could go home. They said no I couldn't because one had become available but it would be in the afternoon so we had to kill time in the hospital from 11.30 until I got to the unit...
Once I got there I met some of the staff, one of the doctors clerked me in and one of the co-ordinators came for a chat. She was going through a list of things including if I got on the list how I'd get to the hospital, contact numbers and after a few minutes her bleep went off. She went to go answer it and it was a heart being offered for transplant. She then obviously had to dash off to arrange the transplant but left me with the lung transplant handbook to read through, she said "this will be your bible, most of what you need to know you'll find in here but I will come back and talk to you more". I hadn't expected for things to be so busy and intense on the unit.
The co-ordinator came back today and took me through what would happen step by step from now to life post transplant. She highlighted the sad fact that some people don't get their call in time and in light of this life must carry on as normal as possible because life sat beside the phone waiting for it to ring could be a wasted one. She also stressed that transplant shouldn't be seen as the cure, it is an extension of life. She used emphysema patients as an example she said "they could be ill but tick along for 10yrs or so. If we transplant them they may only get 5yrs but the hope is that those 5yrs would be better quality than they could ever hope for." She then spoke about donor families and post transplant contact and how they encourage recipients to write to thier donor families. She used an example of a card she passed to a family recently, a heart and lung transplant patient wrote and thanked her donor family on her 16th transplant anniversary and how over whelming it is to think a decision they made to help other people live by choosing to donate their loved one's organs 16yrs ago is still making a difference today. There is no bigger gift than the gift of life, organ donation is a miracle. We then moved on to post transplant life and she explained about the drug regime and general health and the fact that not only do you owe a good, compliant drug regime to yourself you also owe it to staff that have saved your life by giving you a second chance and also to the donor family that had to make one of the hardest decisions of their lives at one of the most difficult times of their lives. That for me puts it into perspective, a selfless family say yes to donating a loved one's organs to strangers they may never meet but wanting to save thier lives anyway, how can you not want to look after yourself and your new organs post transplant? I would feel very guilty if I didn't.
Tomorrow I have one of my biggest tests, the right heart cath, I am nervous but I think its more because I don't know what to expect than anything else.

2009-08-02T21:08:00.000-07:00

There was no bed for me on the transplant unit. I don't know what's going to happen now, I'm going to the tests that are booked and that I can go to as an out patient which is only a couple. They tell me I'll still a priority and they hope a bed will come up over the next couple of days, I'm not holding my breath.

One down

2009-07-31T12:42:00.000-07:00

Yesterday I completed test one of the transplant assessment. I want to say I was a little surprised by what I saw yesterday but I wasn't really. I'm not stupid, I know I'm not going into this transplant in the best of condition but still what happened yesterday took me by surprise a little. I was sat in the TDC waiting area waiting to see the dentist. Transplant requires you have good teeth, I have recently seen my own dentist but its a case of having the boxes ticked so I had to see the transplant centre's dentist also. Whilst we were sat chatting and waiting a lady in a chair and dressing gown was pushed in front of us, she said thankyou to the porter and off he went. A nurse approached her and verified who she was and that she'd come from the transplant unit. After a few minutes she looked at me and said "I hope you don't mind me asking but that oxygen you have in that bag (a back pack) do you find it heavy?" I said "yep that's what I have my carer for" whilst looking at mum! She then replied "yeh I have oxygen too but I don't use it when I'm supposed to because I find it too heavy to carry".
I sat and thought for a minute, this lady was in her early 60s, was probably in for a lung transplant assessment, yet she didn't look out of breath and could pick and choose when she used her oxygen. I tried to get my head round how different our situations actually were and just couldn't. I knew I was going into transplant in a not so great state but that was a shocker. Anyway, the maxillofacial department seemed to think I was in inpatients also and as a result my notes were on the transplant unit, a nurse came out and said "is it the cystic fibrosis (CF) unit your under or the transplant unit?" I looked puzzled "neither at the moment, I'm on the transplant unit next week". A common mistake alot of medical staff make, they presume you have a condition before you even open your mouth, because I'm young, on oxygen, quite small and going into transplant they presume I have CF. You know what they say about books and covers? Well that couldn't be a better example.
I got called in to see the dentist, he looked terrified and so was very accommodating, didn't bother to push the dentist chair back let alone do an xray, gave me basic oral hygiene info and said all was fine. Thumbs up there!
The rest of the assessment takes place next week, I'll be taking my netbook so I will be blogging probably late at night when I have allsorts flying round in my head and no I don't mean the sweets... I'm not worried about the tests themselves, apart from the RHC they're all tests I've had before, I've had so much bad news lately the assessment just has to go well...

2009-06-30T07:17:00.000-07:00

Just a quick note. Even though I have been prioritized on the list for a right heart catheter (RHC) as urgent the list is long. They carry out two cardiac catheters/angiograms a week and there's 8 people ahead of me on the urgent list. I've been given an admission to date to the transplant unit for August 2nd and will be there for 4-5 days depending on how things go. The RHC will be carried out on August 5th and I've been receiving appointment letters for that week from other departments for other investigations. In true 'Rachael's Luck' style I received an appointment for oral clinic for July 30th... Yeah that would be the week before I'm admitted, god damn.

2009-06-24T13:57:00.000-07:00

Today out of anxiety more than anything I called one of the co-ordinators. I didn't want them to think I was pestering, my appointment was only on Monday but the amount of concern my consultant showed at the appointment has been playing on my mind. Well not really the concern but the sense of urgency and the 'oh dear although this is what I've been fighting for it is really happening now and I don't know what to do about it' feeling. Just a feeling that I want to help myself as much as I possibly can and if that means being a pest then so be it. The co-ordinator was extremely understanding and put my mind at rest. They had received a fax from my consultant and he has ordered an urgent cardiac catheter, he mentioned this would probably be needed. Now we wait for Cardiology to free up a slot when they do I go onto the transplant unit and complete the rest of the tests. As the cardiac catheter has been marked as urgent and the request has already been sent it shouldn't be more than a week. Things are moving forward, that, to me, is rather novel and something I'm not that used to.

Anyway although the co-ordinator had received the fax by the sounds of it, it was a brief one because she didn't know anything about me and began asking questions, most of which I struggled to answer. This led me to think back to some of the turning points I remember about my lung disease. Some of the main things that stick in your mind as sort of flash backs. Really not major events in reflection but just situations that never leave you.

She asked what my diagnosis was and I said I didn't have one, I didn't compare what I had to another more common lung disease which I and people around me have fallen into the habbit of doing. But then I thought how must that have sounded? I'm 21 in end stage respiratory failure due to some random lung disease I developed age 14 that I've had tests for for the last 6yrs and some of the top respiratory teams in the UK cannot even fully explain the disease or what it is, why I developed it and why its suddenly picked up pace and become hell bent at taking my life. For the first time in along time I allowed myself to relate to what my doctors or the doctors facing me must feel, Frustrated. Frustration has never really come to the front of my mind like it did today. Its always been there but never really a major feeling most of the time I've had to much other stuff going on to actually take some time out and try and assess what I'm actually feeling or even care about what they, my doctors might actually be feeling. I've always thought when it comes to my doctors 'how dare they feel frustrated when from what I'm feeling frustration would be an improvement'. And for some reason that just hit me today, that what I've learned might not actually be right, that contrary to what I might actually believe my medical teams aren't the enemy...

Confused? Me too...

2009-06-23T04:06:00.000-07:00

So you'll probably recognise the new url and the altogether new blog!
Since me and Jamie split and as my situation with transplant becomes more tricky (and the blog was becoming about just me) I thought about starting a new blog. I have so many followers on facebook (34 comments on a status last night!) and so many on here that its just not going to be possible to keep everyone in the loop with goings on so rather than starting a new one I thought I'd use this one.

So those of you that are managing to keep up, here goes.

Yesterday I had an appointment to see the transplant consultant. Last time I saw him I didn't fit criteria and he refused to put me forward for an assessment. This time round problems had been ironed out on both sides, there was no reason why I shouldn't be put forward for an assessment, we all agreed on this, the consultant was pleased I was a good candidate and has passed my case to the transplant co-ordinators and surgeons. I will need to be admitted to the transplant unit for a few days whilst the team check my other organs, mainly liver and kidneys because the post transplant drugs are most harmful to those organs. And run a few other tests to bring things upto date then they will all sit down at a meeting and decide whether or not to offer me a place on their list. I'm not at this point on an active transplant list. The consultant has given the go ahead for the assessment to take place, it looks extremely positive but nothing is certain yet. My london team have been in contact and are 'delighted' with the fact the consultant was happy to put me forward for the assessment. I am now just waiting for the co-ordinators to call me onto the transplant unit to complete the final tests as I said that will be within the next 2 weeks.

On the subject of my London team, a recent summary has revealed they understand what is happening with my disease, what is going on but not really why and I don't have an official diagnosis. I have a lung disease so rare it doesn't even have a name. It is similar to several conditions but doesn't fit into one label. As the blog title says, anything but ordinary!

The assessment will hopefully take place soon, I will be taking a laptop into hospital with me so I'll keep this blog upto date daily.

Rachy

Update from Rachy's mum

2009-05-08T12:25:00.000-07:00

Hello, don't worry Rachael is ok. She told me to come on here and update, she hasn't abandoned her blog completely but is taking a break at the moment. Her health is continuing on a slow decline which unfortunately we can't do anything about. Not much has happened recently with transplant, we still don't know which way things are going to go. We're still waiting to get the ok to get her listed be it in the UK or America. This waiting has affected all of us a great deal. If we had a definite answer we could deal with it either way but the not knowing is the worst thing. Rachael hasn't really been herself recently and I can see this has got to her alot. She's taking time out at the moment to find some head space, enjoy what she has and make the most of the things she can still do. Rachael hasn't had much support recently either, unfortunately you can only spend a limited amount of time at day hospice and her time there was up some time ago. Her local doctor sees her on an as needed basis, as her decline is a steady one there isn't really a point in seeing her unless the situation becomes acute i.e with infection and other wise her other support systems seem to have disappeared which hasn't helped.
We want to thank everyone that has donated and the people that continue to donate to Rachael's transplant fund. I hope to be able to update you soon with some positive news.
Lynne x

long update...

2009-03-14T12:28:00.000-07:00

I'm sorry for the lack of bloggage and lack of contact lately, I've had emails, facebook messages, texts and I just haven't replied to any of you, I am so sorry! Things have been a bit rocky. Due to a poor appetite I've not had much energy to do anything. When that happens or I'm feeling worse than usual it affects everything including my mood. I've not had motivation to do anything and have spent alot of time lounging in pyjamas. My lungs have been, I think the best word to describe them is 'ratty'. They just feel angry. I've seen the doctors at the hospice and my nurse practitioner has been out to confirm it isn't infection. My nurse practitioner advised I increased my morphine and diazepam. It is the only thing that can be changed when things aren't going well, it is the only 'fix'. That's resulted in more dovet days than usual in the past week or so. On a transplant front, I know alot of you have been asking about this so here's your up date. In my last blog about it I made it sound very simple, for those of you that know me you'll know I'm not that simple! It's been a case of one step forward and one backwards. The reason or the main reason anyway that I couldn't get onto the UK transplant list was because I was told there was problems with my respiratory muscles, they didn't move in the right direction and so that would make recovery from a transplant too dangerous. Plus I was told that the problems with my respiratory muscles were the biggest issue anyway and new lungs wouldn't fix that. Tests in London, invasive, more accurate tests on my respiratory muscles have come back 100% clear... There is nothing wrong with them. That's the step forward...
The step backwards. London have reason to believe the secondary condition I've got (the condition I've got as a result of having diseased lungs for so long) has got worse. I've got secondary pulmonary hypertension (SPH), a condition that affects the heart and blood vessels and the London team believe the blood vessels around my heart and lungs have become narrower and are going into spontaneous spasm. When this happens my oxygen levels can drop by upto 50% as it literally cuts off the oxygen supply to my body. This is what they believe is happening. There is only two ways to diagnose this, one being a lung biopsy which I am not fit enough for the other being a right heart catheter which doesn't come without its risks. At the moment I am waiting to hear if this can go ahead in the intensive care unit. If it can't be done or if when given the risks I decide against it (and that has crossed my mind because I know what the risks are) I don't know where that is going to leave me. They have said if the SPH is stable I will be able to go onto the transplant list for a single or double lung transplant and I could just be listed for whatever comes available first. If it turns out to be progression in SPH there are treatment options but they don't hold much hope for them at this stage and it will eventually mean I will need a heart and double lung transplant. So that is where things stand at the moment...
As some of you may know I've just become the Good Will Ambassador for the charity Breathe On UK. I will hopefully be attending my first conference in April to launch a parent support pack at Portucullis House, Westminster, London. I have to say I'm rather excited!

2009-02-28T11:57:00.000-08:00

A small clue (click here!) as to what I have been upto recently... More to come later!

update

2009-02-18T17:32:00.000-08:00

A long over due update from London. I have had to give myself time to process this info so I'm sorry for the lack of blogging.
My week turned into a bit longer as is usual here, if it weren't my 21st birthday this weekend I would be staying a lot longer I can tell you. Having said that they haven't done any tests that are out of the ordinary. I had a lung CT, which was pretty unchanged, lung function, which I think was around 12%, my lung function is quite up and down between 10 and 30% so that is not an abnormal figure for me. I was just having a bad day. Unfortunately the lung function techs still panic on my 'bad days'. I did well on the capillary gas on air, they take off your oxygen for as long as you can stand it and take blood from your ear to check your oxygen levels. It took a full 2 minutes for my oxygen levels to fall to 81% and the tech took the gas at that point. It came back as oxygen 79% and carbon dioxide a little on the high side but again not higher than what is within normal for me. And I've been on over night ventilation since age 17. Bloods have been ok as far as I've heard. On Tuesday went to the muscle labs. This was always going to be the biggest hurdle for me. Muscle tests are brutal, how they can put patients through them and even call them 'tests' is beyond me. They insert two NG type tubes into your nose, one sits above your diaphragm the other below, they have balloon sensors which are inflated when they're in place and they feed data back to a high tech computer. The tubes are thick and wiry unlike normal NG tubes. I always have difficulty passing them even with anaesthetic and jelly. They tried and tried until my sinuses bleed, I was in tears, my nose was pouring with blood, jelly and god knows what else. It hurt anyway, alot, but they did eventually manage to get them down. I sat in the lab with these tubes down my nose tape all over my face, really pissed off, I felt like someone had punched me in the nose, more than once. And one of the techs passed me a newspaper... I'm not going to write on here exactly what I wanted to do with it... but it wasn't read it anyway. I held a tissue under my nose catching the blood whilst they got their much needed data. But then to every one's surprise the results were 100% normal... None of us had planned on them coming back anywhere near normal but they conclude that I have NO DIAPHRAGM problems or 'funny breathing patterns' of any kind. The reason or one of the main reasons I was turned down for transplant in the UK was because of the diaphragm issues. They said they would make recovery post transplant almost impossible and a transplant wouldn't be the answer because I'd still be out of breath anyway. The diaphragm disorder no longer exists... so I will leave you to ponder that one as I don't want to say too much at the moment but I don't think I need to spell out what that probably means...
*grins* :-)

transplant update...

2009-02-05T09:27:00.000-08:00

Well I poured my heart out in an email to my professor last night in London. I am not really someone who does that often, especially to professionals incase they think I'm like emtionally unstable or something but I really made sure my email painted a good picture of how my life is now and how much my lungs are affecting me physically. I explained how my consultant had said in his opinion this is an 'urgent situation' now.
I went to see a friend today I met at the hospice. She hasn't been for a couple of weeks as she's just had an operation and is recovering at home. We sat and had a catch up, which was long over due! And we just spent the afternoon nattering. Then my phone rang 'unknown' I went "oh god better answer this". It was the interstitial lung disease nurse from the Brompton she said "hi Rachael do you know your coming in on Monday?" I just went quiet "THIS Monday?"
"Yeah we've arranged transport and bed manager will be in touch, ok? see you Monday!"
Just like that... No explanation of what they will actually be doing, how long it's going to take or even why all of a sudden they have just decided to admit me. I don't know where the bed is coming from because I can usually wait anything from 3-6wks for a bed for tests. I expected a reply to my email explaining all when I got home... Nothing. I phoned my consultant he said "ah jolly good, this will complete your transplant assessment, call me as soon as you get home".
Now to clear things up a little... Why after all this time has it taken them so long when transplant was first mentioned over 3yrs ago to me? Well 3yrs ago I had the assessment and they found I had a problem with my diaphragm, they said it would make transplant dangerous and as long as my lung disease remained stable the risk really wasn't worth it. My lung disease did stay fairly stable apart from the odd 'blip' until late August last year. It was at that point I was referred to the hospice and my lung disease really started to pick up pace and progress. I started a heavy Morphine and Diazepam regime in September when I was admitted to the hospice, at that point I didn't actually now if I'd leave there alive but 5wks later I did. In late November I caught severe Pneumonia and I will admit I wrote letters incase it was the last time I was to catch pneumonia. Since then I have been living on a knife edge with my lungs, I have been seeing my main consultant weekly and the physical side affects of everything my body is struggling to cope with has become very obvious. Everything from darker eyes and thin hair to weightloss and fatigue. We're hoping now (me and my consultant) that although we know there is a risk the diaphragm problem could still be there that they now feel that I will benefit more from transplant than I stand to lose. Until today I had not even thought ahead to what 'life on the list' could be like, I was focusing more on actually getting on a list, that has been my main focus. And although I still don't want to think that far ahead incase it doesn't happen it actually crossed my mind today that I could soon be joining the other 7,910 people on the UK transplant list...

2009-02-04T14:44:00.000-08:00

I have stayed away from my blog recently. Mainly due to how difficult things have been health wise. I have not wanted to blog about my bad days but I guess thats what its for... The last week or so has been tough. The fatigue and tiredness has been the worst I've ever known it. I have been sleeping so much I have sort of not had chance to sit down to proper meals. This is obviously not a good cycle to get into because I don't really need to lose anymore weight at the moment. The weightloss has led to muscle wastage in my legs which is making that bit or walking I could do even more difficult than it already is. I saw my consultant today he is really trying to push things through with the assessment, he said the physical deterioration recently is concerning. To hear him say that makes me worry even more! He is someone who when they're a bit worried they will kept it hidden and have you believe everything is going well to hear him say "3mths have gone by and we have got nowhere, we can't afford to sit back and watch another 3mths go by..." Is not exactly what I wanted to hear but then again I would rather I was told the truth.

2009-01-27T15:00:00.000-08:00

My week has been sort of messed up... (Nothing new there then). On Thursday one of my best friends came round for a catch up. I love spending time with friends it makes me feel strangely 'normal' for a while. Anyway she came round and we sat having a gossip when the phone rang. It was the psychiatrist saying I had missed an appointment with him earlier that morning, he had cancelled my appointment for next week and sent me one for that day I said "I'm sorry I never received it". He said he had a free slot and asked if he could come upto the house now and see me? A little taken a back I said "err its not a great time butttt okay". Within half an hour there was a consultant psychiatrist sat in my front room... Hmmm. A little unexpected, my poor friend was thrown into the kitchen for 2 hours.
I'm not going to go into detail about the actual session itself, he had spoken to my local transplant doctor about what the 'issues' were and lets just say I got a few 'things' and feelings off my chest and also cleared things up a little. I had been told psychiatric assessment was standard procedure when someone is facing a big operation like transplant but I have to be honest it didn't seem that way. We talked about things completely off the topic, I don't know whether he was trying to build up a picture or digging at things that weren't there to dig at but I made sure I got my point across and really told him what I thought of some of his comments. Needless to say I don't need to see him again and he's given me a clean bill of mental health for transplant!

2009-01-21T10:08:00.000-08:00

On Sunday I went to see 'Seven Pounds'. I had a rough idea of the story line and was looking forwards to it. I managed to cry from start to finish... The story was mainly about organ donation, something I'm obviously passionate about. Will Smith manages to crash his car into a bus whilst on his mobile phone; he kills 7 people including the passenger, his wife. He then sets out to save and improve the lives of 7 people, 5 directly through organ donation, 1 young life through bone marrow donation and another family he gives his home to as he plans on not needing it anyway. The lady he signs his house over to has two young children and is in a very abusive relationship. Though the story mainly follows a woman (who he later falls in love with) who has congenital heart failure and needs a heart transplant, she falls desperately ill and Will confronts her doctor on what her chances are of finding a donor. When he discovers she only has a 3-5% chance of finding a donor in time due to the rarity of her blood group he decides to take things into his own hands and ultimately commits suicide to save her life. He also restores the gift of sight at the sametime to a very worthy cornea recipitant. I think box offices estimated over 70% of a cinema audience will be in tears by the end of the film, it really is that touching. It shows how important the gift of life really is and shows how much organ donation changes lives. That can only happen though if you talk about your wishes with your loved ones (hopefully this film will get people talking!) and sign up to the organ donor register so go do it here!
Health wise for me in the past week or so things haven't been great. I've been seeing my primary consultant weekly now for the past two weeks and he admitted today he is concerned about the way things have become. To hear that from a consultant is worrying, I broke down on Tuesday at day hospice when I spoke to one of the staff about a letter I had received, a brief run down of last weeks appointment where he gets the message across about how worried he actually is. He said today he doesn't know why but there has been a clear deterioration in my lungs. Something is affecting my neutorphils (see previous post) and he doesn't know what, looking back at previous bloods my neutorphils have never been low before. Neutorphils make up 50-70% of your immune system. It doesn't take a rocket scientist to work out that could cause alot trouble for me. It means I'm prone to infection and unable to fight off infection. With what little lung function I have infections hit me hard as it is what I don't need is hardly any immune system to fight them off with. He concluded by saying he would call my London team this afternoon and see if they can speed up the transplant assessment given the deterioration, he doesn't want to have to admit me to hospital because of the fact nothing can be done anyway to improve my current health and due to how compromised my immune system now is. He also said now there is a change in bloods they should see me sooner and hopefully work out a plan. He patted me on the back on the way out and said "I'm sorry; I wish I could do more but the orders come from above and I think we need to bang some heads together!"
Oh one last thing, I want to wish one of my friends and another hospice patient well with her operation next week, if you’re reading this best of luck and we will miss you at day hospice! xxx

Pic

2009-01-16T12:27:00.000-08:00

New hair!

ramblings, neutropenia and other things...

2009-01-15T12:05:00.000-08:00

Thank god another week is nearly over. This week, everyday call it fate bad luck or whatever I have either been at appointments or had 'visitors' (health related one's I mean)...
I had blood taken last Friday because I have been stupidly tired recently. Napping at the dining table and such like. I fell asleep with my laptop on my knee the other night music playing and chat windows open (and it wasn't because my friends were boring me!) Before I plan on doing anything remotely energetic like having a shower I have to sleep before hand to build up energy and afterwards so I've actually got energy left for the rest of the day. At day hospice on Tuesday I was hardly awake at all and some of the staff commented on my lack of energy. It started to get stupid last week and I asked my GP to check my iron levels as I mentioned in the previous blog. Much to my surprise my iron came back fine! She started going through the results and said "ah there is just one thing... Have you ever had low neutrophils?" I looked blank; I had heard of neutrophils in passing but had never had a problem with them, I knew basic facts like they make up 50-70% of your immune system and in a nutshell your pretty much screwed without them. She carried on "they have requested we repeat the bloods in a week or so". Super... I said "I'll have a chat to my consultant, I'm seeing him later".
Straight after that I went up to chest clinic, my consultant is so good with me, he will see me at the drop of a hat, I don't actually plan appointments with him, I just call him on his mobile when I need to see him and he gets me straight into his next available clinic. I'm not one for drama especially not at hospital clinics but as they say "you always get one ah?" and my god did I (or we) that afternoon. I went into the waiting room and sat next to a lady who seemed to be impatiently tapping her feet. I just looked and smiled. A girl opposite me got called in and this lady held up her hands and said "for god sake I was here before her! This is a joke!" I looked at her and said "oh dear, when was your appointment?"
"11.10am" she snapped. By this point it was 12pm. A couple of ladies came to the waiting room from spirometery and we're as thrilled to witness this as I was... As the consultant was calling in another patient the lady next to me jumped up out of her chair and marches over towards the consultant, I actually thought she was going to lunge for him but she shouted "oi! have you forgot about me?! I've been here almost an hour and I have to get to Accrington ya know?!" Looking completely baffled the consultant replied "no, let me see where your notes are". I sunk deeper into my seat and hid my giggles behind my hand. The receptionist went into the doctor's room and came out and said to her "your next, your being seen in appointment order, you were here before them but your appointment is after theirs". She tutted and carried on tapping her feet. When she did finally get called in I had a giggle with the two ladies opposite me as one of them said "thank god for that!" We got talking and had a good chat until they were called in, they never asked me about my lungs or health or anything like that.
When I did eventually go in my consultant said "its funny I just mentioned birds and lung disease to the previous lady and she said 'Oh yeah, there's a girl that's been in the local newspaper alot recently with bird related lung disease'. She obviously didn't know she's just been chatting to you for the past 20 minutes". We had a giggle about that then actually got down to the reason I was there to begin with...
My lungs haven't been great over the last few days so called him on Monday and I went to his clinic on Wednesday. My sats were good, my weight was down 8kg from last clinic since just before Christmas but that’s not such a bad thing. We had a chat and went through what had been happening lung wise, came to the conclusion that although viruses can kill off neutophils I didn't have an infection and wasn't in need of IVs. I have just been suffering with further lung deterioration which is probably the cause of the tiredness also and so there's nothing anybody can do about that. I asked him about the Neutropenia and he said "to be honest unless it is some sort of virus which I don't think it is I don't know how it fits with your lung disease. I will contact your teams and see where we're up to with the transplant assessment. Come and see me again same time next week, we'll keep a close eye whilst things are a bit rocky".

2009-01-07T14:23:00.000-08:00

I haven't posted recently mainly because there isn't much to post about! We had a quiet new year, enjoyed everyone else's fireworks and was in bed for just after midnight. Not exactly a thrilling night, caught dad snoring in the chair at one point...
On a health side of things my lungs have been a bit up and down. Over the past few days I've become more aware I'm out of breath. I don't think I am more out of breath than usual but I'm just more aware of it, I have been taking my maximum dose of Diazapam. Maybe I shouldn't be doing but I didn't get to talk to anyone yesterday at day hospice, my advanced nurse practitioner (community nurse) is off on leave and my consultant won't have the foggiest so I thought I'd see to myself. I'm quite used to being left to my own devices, up until summer last year I was very unsupported in the community, I didn't have any sort of community nurse, my consultant got me an appointment when I needed to see him and I wasn't attending the hospice. I'll possibly run it by my GP after the weekend if things are still the same but I doubt she'll be able to help out much either.
Otherwise recently I have been more tired than usual and my eyes have gone very dark. I have bloods on Friday to check my iron levels and haemoglobin I suspect as my appetite isn't so good at the moment they're the cause. My iron stores have been low for as long as I can remember, when I was 17 my B12 levels were found to be low too, I thought nothing of the pins and needles in my hands and fingers and when I was diagnosed with Pernicious Anaemia and discovered I'd be on B12 injections every 3mths for the rest of my life I was quite shocked. Low B12 levels and Pernicious Anaemia can cause spinal and brain damage if left untreated, the injections are stupidly painful, the solution is thick like tar, I hate having them but they're just every 3mths now. At the start I was on a build up course, something stupid like one every other day and I actually cried at the thought of having them so often and I don't cry at needles... Usually!
There isn't much news on the transplant front either. I've received an appointment to go for a psychological assessment, something I'm told is procedure when someone is to under go such a big operation then once I've been given the all clear then hopefully one of the hospitals (I'm puzzled as to which) will hopefully crack on with the actual transplant assessment...

Christmas time... Reflection...

2008-12-25T04:57:00.000-08:00

I'm not gonna put a dampener on my blog, I love Christmas but this time of year was never going to be easy I suppose. Today in my minds eye was one of those days I thought I'd never see. This time last year I was on a high dependency unit in hospital and not very pleased about it. I pushed the hospital Christmas dinner to one side in a complete huff. I had caught pneumonia from a previous admission which is another story altogether...
In summer 07 MRSA managed to get through an arterial line in my arm, it travelled into my hands and all my fingers causing a deep cellulitis infection around my hand and all my fingers. I couldn't even put my hand on the bed to move myself about, it was red, swollen and very painful. After months of strong antibiotics it cleared up from all but one of my fingers. Around October time my index finger was still red and by then looked a little deformed. My Dr just shrugged it off as remaining infection but said he'd do an x-ray to rule out other possibilities...
The results weren't good (I will upload the actual x-ray taken when I go on my other laptop) and as soon as they came in I was referred to an orthopaedic surgeon. He told us MRSA had caused 'bone death' in the last bone in my index finger and because of chemotherapy treatment I was waiting to have for my lung disease it needed to be completely eradicated, if it was it could re-enter my blood stream it could cause serious septicaemia. He agreed one more week of antibiotics and if it was no better further intervention was needed. Surgery, I said "erm I doubt very much my lungs would cope with that!"
"No" he replied "under local anaesthetic". I don't know what sounded worse. Long story short I had the first of 2 operations. The first not being very successful, he had to remove so much dead bone that the joint collapsed and my finger just looked more deformed. The second one proposed to go ahead in late November still has some mystery about it as to exactly what happened and what went wrong. I was last on the surgical list on a cold day last November. Due to the nature of the operation I was told I'd need K-wires to hold the healing bone in place as he planned on removing the joint completely and pinning raw bone edges together. Due to the fact the wires needed to be left in place for upto 6wks I needed good antibiotic cover. I remember spending the best part of a day on the surgical ward and being terrified but knowing I was in safe hands...
Various Drs came to try and get some IV access for the antibiotic, Vancomycin which I've had on many occasions for MRSA. All the Drs that came to get IV access failed including some ICU Drs. So it was left to the anaesthetist in theatre. Late that day I went down to theatre, I remember saying goodbye to mum and being wheeled into the anaesthetic room. I remember being attached to the cardiac monitor, the Drs preparing the local anaesthetic and the anaesthetist began slapping my arm in a bid to bring up some veins. The next thing I remember is looking at a clock... I had no idea where I was, who I was, I couldn't speak, I couldn't move, I had gathered something somewhere had gone wrong but I didn't know what. My bottom lip felt as someone had punched me in it and my throat felt as if I'd been strangled. As I started to come round more I started to listen to conversations. I heard the words 'brain damage' and 'cardio-respiratory arrest' thrown around a few times but I didn't actually believe they were talking about me. I tried to speak but as I opened my mouth the words just didn't come out. I scowled back at the clock. 2hrs had passed, what had happened in 2hrs? Where did they go? Some hrs later in the ICU my parents explained what had happened. I had suffered a serious anaphylactic reaction to the antibiotic. I had swelled around my face and throat I then stopped breathing, my blood pressure dropped and my heart suddenly stopped. The sore lip and throat were from the breathing tube that was quickly inserted. I was without a heartbeat for almost 2 minutes which had caused oxygen starvation to my brain and hence the reason why when I was told something a few minutes later it would need to be repeated... I was suffering from mild short term memory loss from the trauma and oxygen starvation. I remember very little about that time, I don't even remember not being able to breathe in the anaesthetic room. Also other details, some I wish I didn't remember and the fact that 7 days later the operation went ahead and was successful. My memory did fully recover but is now not 100% due to the morphine I take. Unfortunately the stress my lungs had been put under that week led to me developing pneumonia which led to me spending Christmas 07 in hospital. I believe it left some lasting damage behind which I feel has contributed to my rapid deterioration this year.
I'm glad to be spending this Christmas at home and on a years reflection I'm proud to tell you about what I've managed to live through...

Christmas celebrations at the hospice

2008-12-19T13:28:00.000-08:00

Today I went to the hospice Christmas party. The amount of effort the staff had put in was truly amazing. The day hospice room was already beautifully decorated but today so were the staff! They laid out a buffet for us and I actually ate something! Matron came over and said "your eating something... oh my god!" Yeah, ok, my appetite isn't what it was these days. I realised that my rather small appetite has had an impact when yesterday I had a mad dash to the nearest Newlook when I found that what I was actually going to wear to the party no longer even fitted me. Oops.

There was entertainment too, apparently the Spice Girls had been asked to come but they couldn't make it so they asked their mums to come instead but 2 of them couldn't make it, ill with arthritis, 3 of them did turn up and danced around to Spice Girls songs. It was infact 2 health care assistants and a physio assistant in a wig and strange looking outfits... I will put a video up when one of the staff nurses sends me one...
The sister also put on a policeman's hat and we sang (or mimed in my case, no one would hear me under an oxygen mask anyway!) along to the fat policeman song. I have no idea what that was about... Then santa came round and handed out presents, I have a sneaky suspision it was actually the hospice co nsultant but I couldn't tell properly so I will investigate that one on Tuesday!
After that some of the nurses got up to Jive. The lady I sat next to, M, who also goes to day hospice on a Tuesday is also an oxygen patient at that point got a little teary "I used to be able to Jive" she sobbed. Up until that point I hadn't really thought about how potentially sad such a party could be for some of the patients. It was after another comment from M about some cards she'd had printed that really made me think, she'd had some cards printed and they had spelt here name wrong, she sent them back but didn't think the correct ones would arrive in time but they did and she had a mad rush on her hands to get them out to people because she feared she may not be here this time next year and she said "nobody would want cards with my name on when I might not even be here this time next year". She seemed so blasé about it but I could tell that it was really affecting her. It was at that point I looked around the room at the other 40 or so patients smiling faces and thought, she's right, there's a good chance alot of these people might not even be here this time next year, myself included. I also got a little teary then too but when asked if I was ok? I said it was the heat and one of the nurses opened a door for me. I peered out into the garden and held back the tears.
I had conversation later with another lady that also goes to day hospice on a Tuesday. She's a cancer patient who has been battling cancer for a few years now, along with myself she's probably one of the youngest patients at the hospice (ok so there's still 23yrs difference between us but on average there's 50 odd years between me and other patients!) and she was telling me about her 12yr old son at school. They had an assembly and one of the teachers asked what a hospice was? One of the kids put their hand up and said "it’s where people go to die..." the teacher then agreed. She said her son was sensitive as it was and he went home and questioned her about it. She said with tears in her eyes "I said to him I'm not dying but I could tell he didn't believe me. I phoned his school and explained to them exactly what happens at a hospice and asked them to at least have a word with him and his class". Having said what I've already said in this blog I guess it shows what sort of a variety of patients the hospice really caters for and what some of the different needs are of the people that go there. In my eyes the hospice is a happy, lively, beautiful place that I'm glad to attend. It’s a place of life and peace. Today I saw people with all different illnesses come together and every single person in that room at some point was smiling, even the ones that couldn't speak, smiled too. That to me says alot about what hospices are about, although some people will spend their final days there, it is a place of life and a place that should not be feared.
I'll leave you with a short clip of some of the staff that made today as wonderful as it was…

Remember most hospices rely solely on local fundraisers and donations and receive very little funding, if any from the government. To make a donation to Willow Wood Click Here.

back tracking...

2008-12-18T11:11:00.000-08:00

Today I took a trip back to where it all started. Booth Hall Children's Hospital, high dependency unit (HDU). I went back to see one of the members of staff I've kept in touch with. It was a bit surreal going back. I haven't been onto the unit for about 4yrs. As soon as I turned age 16 and left school I was transferred to adult care. The transition was not an easy one. But at the time my diagnosis was an adult lung disease, I was wrongly diagnosed with Idiopathic Pulmonary Fibrosis which usually affects adults age 50+ and has a very poor outcome. So I moved to an adult hospital not far from Booth Hall and never really went back again. Then recently a couple of the HDU staff added me on facebook and we have been in contact ever since. Being on that unit changed my life forever, whether I liked it or not. Going back today was strange, nothing about the unit has changed, and even the monitor alarms sounded the same. The staff member I went back to see today had been keeping up with my story somewhat but I could tell although he was pleased to see me (I got numerous hugs!) it was as difficult for him as it was for me. I was on the unit for a good 3mths when I was there, he went through the ups and the downs with me and eventually after a horrific open lung biopsy the diagnosis of lung disease with a bleak outlook (although the exact diagnosis was not right I do have another form of ILD and it also has an equally poor outlook). Alot of staff in a situation like that would distance themselves, its something I've found with adult medicine, staff are very reluctant to get emotionally involved (maybe something to do with the fact most of the time the nurses for one run around like headless chickens or at least make themselves look busy…). Children's medicine is nothing like that or at least the staff on that unit weren't. I don't know if the way children are looked after on that unit is unique to that place or it is just the way things are in children's medicine. That HDU because it is a sister hospital to the main hospital, Pendlebury Children's hospital, makes it often quiet, especially in the summertime. Today there were 2 patients, 1 very unwell; the member of staff I went to see was pretty much tied up with that patient so I didn't stay long. But going back to the beginning was, I don't know how to describe it, I had mixed feelings. In a way it was great to look back and see what I've been through and lived through since then, in another way it was sad to think not much had changed and I have infact deteriorated further. But I'm glad I did go back and it was good to see that member of staff and the unit and I will probably go back again.

update

2008-12-12T17:11:00.000-08:00

Well as you have probably worked out from the gap, I did go into hospital for IVs. Things got a little complicated with to begin with... I have not made my wishes on end of life decisions clear. It’s something I've discussed verbally with the hospice staff but nothing official. The night before I was admitted I scribbled some basic info about me on note paper and decided I'd make my wishes clear. I didn't find a time to talk to my parents about what I'd written and it all came as a bit of a shock I think. I got told I needed a change of attitude and I shouldn't be so selfish. Selfish or not those were my wishes and the medical team stuck by them. It made things easier for me in some ways. I knew what was and more importantly what wasn't going to happen... Anyway I got my IVs, it took 3 five day courses of 2 strong IVs to control things a little, MRSA was isolated in my sputum. But I am still not infection free I don't think. Since my allergy (if you can call it that) was 'discovered' to Vancomycin last year that drug has now obviously become unusable. Instead I was tried with a different drug called Tigecycline, it is a good drug for MRSA and other bacteria but the side affects aren't pleasant and due to vomiting I've lost another stone in weight.
Due to infection Jamie hasn't been able to come near and I'm sorry to say it has lead to us having to end our relationship. The strain for me was too much. I wanted him there when I needed him most and he couldn't be, I know for 1 second thats not his fault its just the way things are and the more I thought about it the way things always will be. We agreed to still talk/text and I hope he will continue this blog with me. I'm looking forward to hearing how his training for Australia transplant games 09 has been going...
Jamie made transplant look easy, his is one of the success stories that I'm glad to have been apart of but recently the issue of transplant for me seems to have got more complicated (if that’s possible). Duke is still waiting on scans and x-rays that have been posted to them. The teams have now shown alot more interest and both London and my local transplant centre appear to want to be in the picture. I don't have a problem with them taking interest, I need to keep my options open and things would be so much easier if I could get on the list in the

but they are proposing dangerous and invasive tests which I'm not sure I want to be part of. To cut along story short things with the UK teams have got very 'messy' and its been left to my local consultant to untangle this web of mess and see who is really in it to help me get on a transplant list and who is out to make life harder. I wouldn't want to be in his position right now.
If there's one thing I've learnt recently from various conversations and recent happenings its that transplant is no cure, it is no fix and it is certainly not the answer to everyone's problems. It is a gamble and a big one at that. A swap of one set of problems for another and what I and the teams have to work out is are my problems worth swapping? Sure the reward of things working out is the dream but what if I were one of the unlucky one's it just didn't work out for? I'll leave you with some transplant wisdom anyway...

Pulmonary Hypertension Awareness...

2008-11-18T11:50:00.000-08:00

Today in the USA its Pulmonary Hypertension (PH) awareness day. I don't know if we have similar days over here in the UK but the Myspace I manage has alot of friends on it with PH and so I felt we should join in in raising awareness for this horrible disease. I can't even begin to find the words to describe how on a day to day basis how this disease makes me feel and of course it was the reason 5yrs ago Jamie had to endure a heart and double lung transplant. The differences between our diseases is that Jamie's was Primary Pulmonary Hypertension (PPH), basically meaning that was his lung disease and the reason he had his transplant. They discovered a hole in his heart and then when he began turning blue during activity PPH was diagnosed and he received a successful transplant aged 18. My PH is secondary (SPH) meaning it has a cause, the cause is my interstitial lung disease. My lungs are putting so much pressure on my heart it is now starting to suffer, the blood vessels around my heart and lungs are becoming damaged from that pressure. I was diagnosed exactly 12mths ago and although there are a few good treatments for PPH, SPH does not have so many options. SPH is a daily battle on its own beside my lung disease. It causes the blood vessels around my heart and lungs to go into spasm and constrict. I usually have some pre warning, signs that only I understand and are unexplainable but they are signs and when the Vasospasms occur my oxygen levels can drop at times below 60%. All I can do when this happens and it can happen upto 5 times a day is swap my oxygen mask for a high concentration mask and hope for the best. I doubt many of the readers of this blog will even begin to imagine how that feels. Every day upto 5 times a day I feel as if I'm going to die and theres very little anyone can do about it. The drugs have made very little difference to me in the last 12mths and the vasospasms SPH causes daily as I said are just another thing to put up with besides my lung disease. But as the saying goes 'You only live with what you have to'. I would not wish any sort of PH on even my worst enemy and I pray something is done to tackle this relentless disease soon.Moving on, I started with a tickly throat at weekend and have since gone on to develop a full blown chest infection. Unfortunately the hospice are not set up to deal with IV antibiotics which is what I will need for a few days, I suspect. I'm seeing my consultant in clinic tomorrow where he will decide if IVs are needed at this stage but I know from how nasty my last infection turned he will be keen to get on top of it sooner rather than later. But that means I will need sometime in hospital until I'm at least off IVs...

quick update

2008-11-06T15:26:00.000-08:00

Well I think my picture speaks for itself but believe me when I say it has not been an easy week. Long story short I will be going to London for a lung transplant assessment, so theres a possibility I could get on the UK list but that leaves me wondering is it actually worth the risk? Do I have the time to wait in the UK? Can I afford to risk waiting upto 4yrs? Lots of things to think about there plus the journey is 210miles each way which isn't going to suit me so well but I know I have to keep my options open and so I probably will be going. I have a cardiac work up (whatever that means) at my local hospital planned for next week then I will be in London within the month if I decide to go. I was at the hospice today, wasn't a good or easy day, I have fluid on one of my lungs possibly cardiac related, I saw the physios and picked up some tips which I'm hoping will be helpful. Haven't seen Jamie due to the infections I've had recently he's had to stay away, I had a flu jab on Monday too which upset things even more I have been sniffly, clammy and headachy all week. So anyway I will do a longer blog soon and explain why I have ended up going back to London.

Rach

publicity?

2008-10-29T12:13:00.000-07:00

So I'm famous again this week. Page 7 gal and all. Hehe just a small article in our local paper about my trip to Wythenshawe, we didn't even know it was going to be in at all but I guess the more publicity the better. This evening some guy knocks at our door completely oblivious it seemed as to where he was and whose door he was actually knocking at. Mum answered “that girl, that was in the advertiser last week, do you know which house on this close she lives in?” Mum frowned a little “it’s this one why?” Long story short he is from a local charity called ‘Just Help Foundation’. I’ve looked at the website and it doesn’t seem like the sort of charity to help a cause like mine… The headline being ‘Fighting extreme poverty, saving lives’. But I guess with the charity being local, actually based in my town their making an exception? Who knows? I think going through something like this really restores your faith in ordinary people. We have raised so far almost £10,000 just in the last week doing local fund raisers.
I think also the publicity from my article in Closer magazine which came out yesterday has been a great help and I am very pleased with that. So thank you to Emily for sorting that out!
Now something that a couple of people have mentioned, what would happen to the money if either my time ran out or we had any left over (heres hoping on that one!)? I am more than happy to talk about this as people have been kind enough to donate so its only fair they know what will happen to their money. I have had a think about it and it would be near impossible obviously to give each donation back to each individual so instead I’ve decided I’d like it split between some charities. Willow Wood Hospice, the local hospice that has been looking after me since I deteriorated in August. I recently spent a month in the hospice for symptom control and I now attend their day hospice twice a week, most of the staff that work there are volunteers because like most hospices it is grossly under funded. The British Lung Foundation, the only charity in the UK that aims to cure all lung disease their motto being ‘One person in seven in the UK is affected by lung disease. We are here for every one of them’. Also I have recently had a wish granted by The Willow Foundation. I had a pamper weekend away in Centre Parcs (html'ed for my American readers ;-)). They are an adult wish foundation, granting seriously ill adults a wish. The world of adult medicine is pretty ruthless and having spent alot of time in ITUs, HDUs and recently Willow Wood I have seen (or heard) the blunt end of it. So this foundation deserves some recognition.
So I think that about sums this blog up.
Oh one last thing I started antibiotics on Saturday for a possible lung infection. And its a good thing I did as for a few days now I've had bad back pain. I mentioned this at day hospice on Tuesday and long story short I have a Kidney infection. I've been to see my chest consultant today and probably haven't got a lung infection (had my sats checked on 60% oxygen/12Litres and they were 92%, woohoo), its just further deterioration in my lungs but I need to stay on the antibiotics for the Kidney infection.

From Jamie

2008-10-25T02:04:00.000-07:00

When i met Rachael i knew what i was getting myself into cause iv'e been through near enough the same thing with the pulmonary hypertension but never realised how hard it is on the other side of it, what i mean is when i was waiting for my heart and double lung transplant i was the only one who wasn't worried i had the attitude that if i die i die i'm not gonna know about it so i will not let it bother me and just let my family do all the worrying for me and try and live my life as best as i could. Well now i know what they went through cause the thought of losing a loved one is unbearable for anyone and i'm worried sick thinking about Rachael 24/7. It's weird cause when i'm not with her i'm worried about her and when i'm with her i'm worried about her. I try really hard not to let it show what i'm feeling when i'm with her cause lets face it i'm not good showing my feelings never have been and probably never will be although rachy is the first girl who has made me cry (thanx Rach :-)). I guess what i'm trying to say is that i believe our lives are set in a certain way and challenges are sent to test us and the thing is we can beat them if we don't let them get us down and just try and live our lives as best as we can and the most important thing for me was STAYING POSITIVE. Iv'e done it and Rachael WILL beat this illness and get her transplant cause she is a fighter she was ill 6 years before i met her and now she just needs to stay positive which i know is really hard to do but you know the saying "what goes around comes aound".. Stay positive.

Transplant Choices...

2008-10-24T11:40:00.000-07:00

I started this blog so I could be totally honest about my life and what goes on in it and damn it that’s what’s gonna happen in this blog.

So this afternoon I went a place I swore I would never go back to again. I'm not going to name names but it was my local transplant centre.

The last time I was at this hospital... Well let’s just say the consultant and I had a fatal fall out. He told me at 17 to go live my life because I could if I wanted to and I was just choosing not to and there’s nothing more he could do because there was nothing more to be done anyway.

I had the diagnosis of a lung disease which was serious and progressive but that didn't seem to matter and although I had originally gone to that hospital for a transplant assessment it was pretty clear I wasn't going to get one there.

I wasn't happy with what he said to me and without asking his permission I asked to be referred by my GP to a top London hospital I had been to before and knew well.

He didn't like this and after my referral he wrote a letter, a series of letters, to every physician I had ever met in my entire life stating quite clearly I had psychological issues and whatever was wrong with me lung and diaphragm wise was completely within my control and I would become ill at difficult times i.e. when he was on leave and not in the building just for more attention.

He made out I was completely none compliant with my medication. Which is very untrue, of course I'm gonna say that but taking tablets and nebulisers is something I've done for years and although I wouldn't say I enjoy doing them, they're a chore but they're something I can do to make/keep myself well and that gives me some piece of mind that what I'm doing is making that difference and I'm doing the best I can for myself because nobody else can do anything for me! There was one tablet which I had an issue with and those taking it will understand why, at that time I was on a hefty dose of Ferrous Sulphate that was the only tablet I hated taking and would try and avoid and that’s how my 'major none compliancy' came about. Ferrous Sulphate is an evil drug it left me hunched over a water bottle most of the day after taking it and dashing to the loo and from talking to a doctor friend of mine compliancy issues with Ferrous Sulphate are very, very common just purely due to its nasty side affects.

Since all this emerged my London team have read through the letters and were 'disgusted' with what had been written about me but knew they had to take at least some action on it. So I under went a full psychiatric profile and I'm pleased to say he said he was wasting his time because there was clearly nothing wrong with me.

So anyway I saw the transplant consultant this afternoon and he went over all the issues why transplant isn't an option for me here in the UK so here they are:

I'm not physically fit, mobile or well enough, having just spent a month in bed in a hospice that doesn't surprise me much.
My weight is unstable (I have lost 2 stone recently unintentionally).
The psychological and compliancy issues have to be investigated and ruled out completely (post transplant drug none compliancy is very dangerous).
Diaphragmatic issues need to be explored further.
I also need a proper diagnosis for my lung disease at the moment its 'Idiopathic Interstitial Lung Disease' which basically means: An unknown lung disease which affects the lung tissue, my consultant believes its some sort of Interstitial Bronchiolitis or Obliterative Bronchiolitis but we don't know for sure. Knowing would mean we would know if it could strike again post transplant.
I am currently on 30mg of Prednisolone a drug they also use alot of post transplant and they don't like you being on more than 10mg a day pre transplant due infection and wound healing issues.
I have osteoporosis - That could cause problems with bone healing post transplant.
Lastly the UK lung transplant list is just too long, you could wait upto 4yrs for a donor in the UK that is time I really don't have. It would be such a shame to work on the other issues when the list is just too long anyway.

You see how my rant above links in now?

The above list seems like a long one but they are or most are things that can or could be worked on if we had the time and really wanted to make it work in the UK. But we don't have the time, the transplant list is just too long but you see my predicament? My local transplant centre are now saying they need more information, but its a possibility so they have not said "NO you can't have a transplant here so go away" and Duke University haven't said yes yet. I've not been accepted at Duke yet, I'm fund raising because I need to be accepted there because the UK transplant list is too long but Duke could also say exactly the same as my transplant centre have today.
So what do I do now?!
Although the UK transplant list is too long I have not been officially turned down in the UK, yet, that’s pending more information from my London team. But I have not been accepted by Duke either; they’re also after more info on me.
I think having had some time to reflect this afternoon I need to carry on fund raising to get to Duke because I don't have the time to wait around for these lungs in the UK, my time is running out and my consultant who I had a chat to this afternoon agrees with this. But I should also let things run their course at the local transplant centre because I guess it can't hurt right?

photo shoot pic

2008-10-23T17:55:00.000-07:00

Longer post coming tomorrow after my trip (Rachy) to the local transplant center who have already refused me a transplant over the phone stating "she doesn't fit the criteria" but have invited me to an appointment anyway and well I can't very well say no. So I'm dragging my deoxygenated butt to the center tommorrow to hear what I already know... I don't fit their criteria.

For now I thought I'd leave you with a cute pic from the photo shoot...

Jamie's First Rant

2008-10-20T09:27:00.000-07:00

Ok so this blog has been up for a while and I know there has been a lot of posts from Rachael and I know this is about both of us the way we are as a couple and the way were both feeling about what Rachael is going through so I thought I better write something. I went to see Rachy at the weekend and she was having a really rough time infact so rough she could hardly even look at or talk to me about what was wrong with her apart from the obvious but one thing I did work out for myself she is seeing everything from a negative view instead of positive I'm trying so hard to make her smile and try to encourage her to stay positive but she keeps throwing it back in my face. All I know that is that I love her so much and I really want her to make it through this. She did however tell me about some arse who left a comment about her putting it on and to just 'get over it'. Well whoever you are you mysterious commenter I wouldn't wish right now what Rachael is going through even on you (though you probably deserve it).
HANG IN THERE BABY I KNOW YOU WILL BE OK...

One last plea...

2008-10-19T12:11:00.000-07:00

Make video montages at www.OneTrueMedia.com

Not that I'm begging or anything but please, please help me get to America.

Rach

Closer mag

2008-10-17T11:11:00.000-07:00

So I had my lovely visitors this afternoon and we had our giggles, can't quite remember at what (I've had alot of Diazepam and slept since then) but they were funny at the time I'm sure.

Wasn't so well this afternoon but all the staff could think to do was drug me up with Dizepam and put me on my ventilator and leave me to 'sleep it off'. With me, probably not the best option but there was no harm done.

Mum is, in desperation, for some money for my funds, bag packing tomorrow at a local Morrisons. I so feel for her, shes absolutely desperate to get me the money and get me to America. I may ask for some leave from the hospice and go show my face. In the mean time I have been thinking of other ways to pull on people's heart strings. Talking, at the moment is somewhat of a challenge for me so a video appeal maybe the way to go. I recorded something on my laptop and if I can work out how to upload it in the right format I will.

A Journalist from Closer magaazine is coming on Monday to take my story so shes been on the phone to me on and off all day asking about stations/times etc. I will be in Closer Magazine on Oct 28th!

I am going to go now before Jamie completely empties my cupboards (post transplant readers you'll understand me) seen as I don't have a fridge well its cupboards instead...

Rach

Update

2008-10-17T05:01:00.000-07:00

So in this blog I feel the need to set a few things straight. Some not so very nice comments have been left on the main guest book on our website.I am not going on Granada Reports (local new station) tonight because out of 'courtesy' the local transplant centre after refusing to even give me a primary appointment have decided they could just about manage one and have given me one for the 24th of this month. I will be attending (even though I would just like to tell them where to stick their appointment) to find out exactly what 'criteria' it is I don't meet.

After a discharge meeting at the hospice yesterday, social services, after us asking until we were blue in the face if mum could be my carer agreed she could be under 'special circumstances'. Usually a family member that lives under the same roof under the care package I have cannot be the primary carer but they have decided to allow this in my 'special' case.

So I am looking at discharge on the 22nd. Will be going to day hospice twice a week opposed to the usual once a week so I have day hospice on the 23rd then transplant appointment on 24th. My primary consultant is aware and has agreed if I can't cope he will sort me out a bed in hospital, something we really want to avoid but bottom line is my lungs are just not good enough for me to be at home. It doesn't matter how many carers and how much help they will give us if I'm not well enough I'm just not well enough.

Anyway back to the reason for this post. I don't know who you are and which one of us that "I know someone who works at the hospital and has looked after you and theres nothing wrong with you, so get over it" comment in our guest book was aimed at, I can only guess me due to my recent press coverage but seriously if you can be that pathetic and think a comment like that in our guestbook is going to make a difference, well, how stupid are you?...

More later when I'm in a better mood at the moment I have lovely visitors I must get back to :-)

Front page News...

2008-10-15T18:53:00.000-07:00

I Know I/we said this blog would be the thoughts and journey of a transplant couple and believe me in time it will be but for now it's other peoples thoughts... Rachael made front page news today. Below is the article but you can see it for yourself here:

‘Help me before it’s too late’

by Adam Derbyshire (For the Tameside Advertiser)
15/10/2008

A TEENAGER whose crippling lung disease was triggered by the family’s pet cockatiel desperately needs a transplant to survive.

Rachael Wakefield, 20, is fighting for her life in Willow Wood Hospice and admits time is running out.

Specialists in the UK have refused to offer her the lung transplant she desperately requires, telling her she doesn’t "fit the criteria".

Rachael was struck down by the mysterious disease at 13.

She said: "I am dying — this is the last roll of the dice. My only other alternative is a wooden box. I’m on morphine and oxygen round-the-clock. Every single breath is a struggle."

The family needs to raise £400,000 to pay for a transplant at the world’s leading lung clinic the Duke University in North Carolina, America.

Rachael, Dukinfield, Cheshire, underwent years of tests but her illness continued to baffle doctors who diagnosed everything from childhood asthma to pulmonary fibrosis.

Two years ago, it emerged the culprit was cockatiel Penni who had lived in the family home since Rachael was eight.

Specialists at a top London children’s hospital told Rachael she has hypersensitivity pneumonitis, more commonly known as ‘bird fancier’s lung’.

Dust from the bird’s droppings wafts into the air like an aerosol. It is harmless to most people but can trigger chronic breathing difficulties in a minority of people.

Throughout her teenage years, Rachael was hooked up to oxygen 24-hours-a-day. While her pals enjoyed nights out she was "trapped in the body of a pensioner" — a virtual prisoner in her own home.

Regular stays in Hospital led to her contracting MRSA twice. And last November she "died" during surgery and had to be revived after antibiotics were given to her too quickly.

She even underwent a course of chemotherapy in January in a bid to "wipe clean" her immune system.

But she deteriorated in August and after yet another spell in Hospital she was transferred to the hospice three weeks ago.

Rachael added: "No one who can help me is willing to do so — I feel like I’ve been left. It is so rare they just don’t know how to treat it. But every day I’m getting worse. And if we don’t raise the money I will die."

Mum Lynnette, 41, said: "It’s heartbreaking. They have told us there is no shortage of organs at the institute in America. But we have to find the cash."

Rachael has set up a website where people can donate to her fund at www.breathingislife.com

Although Paypal is a quick, trusted and easy way to donate they're taking their fees. Out of a £1.00 donation they will take 37p. So cheques can now be made payable to 'Rachaels Future Hope' and sent to: 32 Rosehill Road, Ashton-Under-Lyne, Lancashire, OL6 8HR. A Seperate bank account has been opened for the transplant fund and account details will be published on the website ASAP.

I promise tomorrows blog will be a personal one!

Rachael

A desperate plea

2008-10-14T16:54:00.000-07:00

I was going to blog tonight about how horrible I have felt most of the day and the local newspaper coming to take my story, then Katie, my best friend sent me something she had been working on whilst in hospital so I'll leave this blog to her:

Over 20 different medications, nebulisers, inhalers and other numerous aggressive treatments, 24hr oxygen, and non-invasive ventilation, is a scary prospect for anyone let alone a young 20 year old girl. This is the norm in the life of Rachael Wakefield, battling to keep herself breathing, living and enough oxygen in her body. This was her (pictured) only a few months ago, enjoying life as best as she could, not letting things get in her way. But over the last few months things have got much worse for Rachael very quickly, and very dramatically.

My best friend Rachael Wakefield has a rare interstitial lung disease that has unfortunately left her so unwell that she desperately needs a lung transplant in order to continue living. Over the years her lung disease has progressively got worse and her lung function is now less than 15% of what it should be. This is not a great for anyone, let alone a young 20 year old woman who has her whole life in front of her. She has battled for many years doing everything that she can to try and improve her condition; in the mean time she has raised the awareness for others with rare lung conditions. Providing families with a friendly understanding ear, sympathy and often much needed advice. Her latest mile stone is setting up a website; www.breathingislife.com, which is helping to further share the stories of sufferers and explain to others the trials and tribulations of living with a rare lung disease.

Unfortunately all medical treatments available for the treatment of her lung disease have been tried and regrettably have not worked, the only way for her to continue living is through this much needed lung transplant. Sadly, all options within the UK have been exhausted and there is nothing left for the doctors to even suggest except being able to refer her for receive this lifesaving treatment, a lung transplant, in America. In order for her to get to America to receive this much needed transplant she needs to raise as much money as possible. This is where YOU can help...

Therefore I am asking you from the bottom of my heart to donate money or anything you can to this special person so that she can get the treatment she desperately needs. She is my best friend, and watching her deteriorate so quickly over the last few months has broken my heart. I can’t stand by see her struggle to live anymore knowing that there is a hope of dramatically changing her life, through this transplant. Unfortunately I, her family and friends can not cover the costs for this treatment, and I find it heart wrenching to think that it is only money that will stop her from dying and save her life.

Please visit www.breathingislife.com to donate and also for further information on this unique and truly special girl who deserves a chance at life.

Many Thanks from a desperate best friend,

Katie Mason

I think that pretty much sums up this blog

Rach

P.S Happy Birthday Katie x

Shocking...

2008-10-13T16:05:00.000-07:00

So, today, for me, has been one kick in the teeth after another. I had an email from the Duke transplant guy (I don't know exactly what he does at Duke but he is something to do with lung transplants (obviously)) and he tells us the 'deposit' for the assessment and lung transplant is... wait for it... $718,000. I saw the email and cried. Alot. That works out at about £360,000. Where that amount of money is going to come from in a matter of the weeks I have left is beyond me. I am seriously getting very worried now and starting to think realistically. That amount of money, unless a famous celeb comes along and donates it is not going to come in time for me. I have spent the majority of the day in tears.

To put it bluntly, if I don't get this money in the next few weeks I will die. That, I'm afraid is the bottom line.

I am still feeling no better yet still leaving the hospice on Thursday (yeah Thursday instead now). My kidneys have packed in for the 2nd night running having not being able to pee for 24hrs I have just had to be catheterised again. For the past few days every time I've felt the need to pee I've had to get Jamie to run a tap for me and believe me it works!

Had a chat with the nurse here tonight, she hasn't properly looked after me before but isn’t happy about this leaving on Thursday business. I still can't talk in full sentences and can do very little for myself, I’m covered in bruises from keep wobbling into things (mainly the edge of the bed) and although the Morphine and Diazepam take the edge off the breathlessness for a while it is not the be all and end all. But it maybe that the hospice have reached the end of what they can do for me and it’s just my condition deteriorating further which is something they can obviously do absolutely nothing about. She’s handing it over anyway to the sister in the morning, I mean its not that I don't want to go home its just I'm not really any different after spending 3wks in the hospice which is, for me very disappointing. Anyway I will stop rambling now.

Oh one last thing, local friends, watch out for me in the Tameside Advertiser this week (maybe front page) they're coming tomorrow to take my story. For everyone else I will post a link when the story is up online.

Rach

Rachaels future hope...

2008-10-13T05:44:00.000-07:00

I (we) felt as a first post we should do some what of an introduction but I think our profile pretty much describes who we are and why we started this blog. So that really isn't needed... I don't think. Today has been a some what interesting day at willow wood (the hospice Rachael has been living in for the past 3wks). Hospices despite the work they do receive so little government funding it is unbelievable. The care they provide for their patients both in and out is truly outstanding. They have said today that they feel they have done all they can for Rachael and need to think about getting her home so other patients can come in to the hospice. Rachael, unsurprisingly is disappointed with this, still feeling unwell and nervous at the prospect of home morphine she has managed to convince herself coping at home is going to be absolutely impossible and has already started making arrangements to go into hospital. Hospital is not a good place for her to be at this stage, the risk of her picking up infection in hospital is... well... HUGE. But none of us really have a choice in the matter and she will be going home on Wednesday... probably. We're trying to persuade the hospice to keep her in, it's only going to be a matter of weeks until we can get her to the USA for her transplant the thing with this is Rachael and her mum are not happy for her to go home so if the hospice make Rachael go she will be going straight into hospital which as we said puts her at a BIG risk of getting an infection and Rachael is in the position now where if she gets an infection its gonna put the transplant in America in real danger and potentially kill her so we feel the hospice is making a massive mistake in kicking her out. But it could and probably is going to be out of our hands.

Anyway for now we'll leave you with her appeal poster.
Rachael & Jamie

You can donate to help us get Rachael to America HERE