Christmas time... Reflection...

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

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 consultant 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...

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

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 UK 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...

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

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?

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

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...

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

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

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...

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

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

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...

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

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...

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...

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