Gone but never forgotten

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

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)

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

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

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

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

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

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!

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

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!

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...

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

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!

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.

:-)

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.

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...

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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