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...
Sending some smiles!
4 weeks ago