Emily - Approached For Transplant
The Thought Of It All
This time last year, if someone had told me that I would have been nearly listed for Transplant twice, I would have laughed
in their face. In my mind I was years away from it; it was a possibility in the future, but I was far too well and "normal"
to be thinking about such things.
However from around April-May last year, things began to go down hill. Rather rapidly too. Having gone from fairly sparse
IVs, which would knock the bug on the head within the 2 weeks, I was getting very heavy infections, and requiring IVs every
2-3 weeks and I had no idea why. I hadn't changed anything, and was being more careful with my meds than ever, so it was
very frustrating and rather frightening.
Come October, things were no better, and my lung function was still 35% at best, dropping into the low 20's every infection.
However I just figured it was a bad patch, and carried on working through it.
During one admission in October, my consultant quietly asked me if the Brompton had talked to me about transplant. I was completely
stunned and managed to mumble a "no" and then before I could think, he had left and I hadn't asked any questions.
The thing is, I have seen friends listed for Tx, and I thought I was in a completely different position to them, in terms of health;
I assumed you would feel far more sick or something. But as I found out later, my sudden large drop in lung function and my frequent
need for IVs was worrying them into listing me early to give me a good waiting list chance. But I didn't know till a few weeks later.
Stupidly, I didn't ask any questions at the following checkup either, and was unable to sleep through worrying about what he had meant.
Although speaking to my friend. who quite rightly pointed out that anything I had imagined would be worse than the actual thing, helped.
By the time I plucked up the courage to ask, it was about a month later. I felt sick with nerves as I just didn't want to hear the words,
but I had written a list of questions, and just ploughed through them one by one.
To my surprise, my consultant had already contacted the Brompton about assessment, and to my delight, they turned me down for being "too well"!!!!
I asked about estimated time before I needed to be referred, and he estimated roughly 2 to 3 years, which was a huge relief compared to what I had
imagined.
A million things go through your mind when you are approached for transplant, and it can be frightening and stressful. But it is definitely
a good idea to ask as many questions as you can, as this helps ease the stress a little.
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