This post has the potential to be upsetting for many reasons so I'd like to preface it with the notice that I'm OK and that nothing has actually changed for the worse but it has been a pretty mental evening.
Around 11pm the phone went - I assumed it was my younger sister Janine calling with some detail about her upcoming wedding this Friday for my mother to pore over - but my mum came to my room with the phone with a puzzled look on her face and handed it to me. Immediately I recognised the soft Geordie lilt of my transplant co-ordinator Kirstie and immediately the cogs started whirring. Was this THE phone call?
Well in a way it was.
I'll clarify that.
They had a set of lungs that they thought were a match for me but they had to talk me through some mitigating factors about them. Now those of you who have been following this for a long while and have a good memory will know that I signed a consent form that said I would take lungs from pretty much any source going as long as they were a tissue match, especially as it allowed me to use the line that beggars can in fact be choosers (quite proud of that one), so what was different about this set of lungs that merited such a change in protocol? If they had a set of lungs they thought were a match and I had already consented then I should already be in an ambulance on my way down in readiness for the op. Well I have to say that Kirstie really sounded out of her comfort zone and it would soon become obvious why. In her 11 years of doing this sort of thing this was the first time she had ever encountered such an ethical issue.
I won't keep you in suspense any longer. The lungs themselves weren't in great nick as the donor had been an asthmatic who had smoked forty a day and there were signs that there may even be lung disease but, as I've already said, I had pretty much signed off on not being bothered about that as they would still be markedly better than the piece of shit pair of lungs I'm currently hauling around. No, the critical area was the other part of the donor's life that Kirstie could tell me about. She (yes it can be a she) had a rather rich and varied sex life that put her at high risk of certain sexually transmitted diseases. I'm not going to, and please do excuse the tortured pun, beat about the bush here but everything about her history screamed sex worker to me. Now those of you who are fast at thinking might be a few steps ahead of others but some might not have picked up on this so I'll spell it out - there is a chance that the donor could be HIV positive.
They had already performed a test which came back negative but from my knowledge of testing for HIV that doesn't mean much as it can take about four months to get an absolute all clear. You see the tests for viruses are dependent on whether you have antibodies for a particular virus, they don't look for the virus itself, and when you consider that HIV actually hides within the immune system itself it just adds to the confusion. So, no matter how unlikely, I could theoretically be leaving myself open to HIV if I accepted these lungs, and if it panned out that I was that would kill me. No messing.
It took me half a second to say "I don't care, let's go ahead with it anyway". Now Kirstie, to her immense credit, talked me through it all and got me to explain it back to her to make sure I really did know what I was signing up for but I told her "I'm aware of the risk and still want to go ahead." A series of phone calls back and forth over the next half hour (including one to my wee sister to keep her in the loop as she's my planned partner for when this is going ahead) ensued and I got my stuff together in preparation for the ambulance that would take me down arriving.
Now, fate stepped in. During one of these calls Kirstie noticed an issue with the antibodies in my blood (that I only just supplied them with last week fortuitously) and sought clarification from the tissue typing experts. When they're doing transplants they don't want any more than two matches of antibodies maximum and I had five. Fans of maths can probably work out that this put the entire thing off as there's no way I'd cope with lungs like that without rejecting them almost immediately. So this was my first false alarm, I wasn't to get the transplant tonight after all.
Now my mind set to wondering about a few things.
Was I upset that I wasn't to get the transplant?
A little yes but not as much as I expected to be.
Was this down to relief that I had dodged a bullet with the HIV issue?
Almost certainly.
Was I really so fucking reckless as to put my life on the line like that just because I'm bored?
Yes, it seems I was. .
I like to think now that I've had a few hours digesting all of this that I would have pulled out at some point but when I think of how crystal clear my thoughts were when I was talking it through with Kirstie I honestly can't be sure I would have done. I really think I might have gone ahead with it anyway and let the dice fall as they may. That thought frightens me now.
I don't have a bad life, not by any stretch. I even have my sister's wedding to look forward to on Friday. When talking to her about potentially missing it she said it wouldn't matter as it would be the best present she could hope for.
I am however growing increasingly frustrated at my inability to join in with what people would call a normal life. I can feel in myself that I'm getting weaker and this thought pervades my thinking. How much longer will I be stable? Nobody can answer that as neither my haematology doctors or the transplant team have seen anything really akin to me before. I never wished for life to be boring but I didn't want it to be quite as special as it's turned out. As the old Chinese proverb/insult goes "May you live in interesting times". Well this has been more interesting than I ever bargained for. So is this why I was so willing to go ahead with something so downright dangerous? Fear that I might not make it through the winter months unscathed and not get another chance like this again? Probably.
Kirstie got the final word in by telling me she hopes for a much more viable set of lungs to become available for me after all I've been through. She says I deserve them. In my darker moments where I genuinely can't see positively I hope for some poor, unwitting twenty year old to wrap their car around a tree. I'm not proud of thinking things like that. All I ask of you, dear reader, is that you understand the desperation that would make someone think something as heinous as that and relate it to the desperation required to think that potentially HIV infected lungs are a good idea.
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