I’ve been on the transplant list now for 2 months and 1 week and if I’m honest I'm still unsure about my exact feelings towards the whole process. By that I don’t mean that I'm unsure about transplant been right for me because I know that it’s what I want to happen, but I’d be lying if I said that there wasn’t the odd day where I sit and just wonder to myself is it all really worth it. ‘Someone has to die in order for me to live’ how does anyone ever really come to terms with that statement? Yet if anything were to happen to me I'm a firm believer in organ donation and my wishes are that any suitable organs can be used for transplant and I signed the organ donor register when I was 16. Can you see the mishmash of emotions that such a predicament leaves you feeling and dealing with?
As for ‘life at the moment’ I feel blessed to be able to say that I still have good days, albeit their far and few between, but I do have them. Take this week for instance my oxygen saturations were 96% on room air, my CRP (infection marker level) had dropped to 7 it had been over 130 and for the first time since last September the number of IV antibiotics that I'm currently taking has been reduced to just one. I'm not sure how long this will last and have no intention of “holding my breath” so to speak but it’s a release a respite if you like from the endless breathlessness, the relentless IV antibiotics with their sometimes unendurable side effects, but when it all subsides and when things return to “normal”, when I struggle to wash my hair, to cook a meal, to walk the few short steps to my car, when I'm sat willing silently for the phone to ring... It will all hit me again like a tonne of water and I’ll instantly remember how it feels to feel so weak, Ill and unable.
I’ve been asked on a few occasions now how it felt to be told you need a transplant. I remember that day so clearly I can still hear the echo’s of the words... “Sharee, we’ve looked at your x-rays, looked at your rate of decline and we think it’s time we talked about referring you for transplant”. All I can say is it was like I was trapped inside a game of Russian Roulette staring down the barrel of a gun waiting and wondering, not knowing what was going to happen to me next.
I try each and every day to put a positive spin on everything I do, painstakingly paint on the “I'm fine” mask, I have too, it’s the only thing I can do, I have to protect those I love, those I care about. I have to protect myself; I can’t let myself fall apart because I have to be strong enough for whatever happens next.
I'm finding hard at the moment not been able to work, you see the good days don’t last long enough to hold down a full time job plus I'm a qualified dance teacher and id be kidding myself if I thought I could do that right now, but dancing wasn’t just something I did, it was a part of who I am and everyday that I'm waiting for that call to come, another part of who I am disappears. At just 27 I see friends going off travelling, buying houses, having families etc and although none of those things have ever been top of my priority list the fact that I can’t just go and do things really weigh’s on my mind. The realisation of my life compared to that of some of my friends is that I know in no uncertain terms if I don’t get a transplant I will die and until that call comes my life is on hold it’s like I'm just existing not living.