Saturday, 28 February 2009

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

Wednesday, 18 February 2009


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

Thursday, 5 February 2009

transplant update...

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

Wednesday, 4 February 2009

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