The novelty factor of being on the waiting list has long since worn out. We are currently at the three and a half years on the active list point and that succeeds another three years just trying to get on the list. Of course no actual 'list' exists but it is a useful tool for helping explain what is happening to people. Currently there are 349 people in the UK waiting for a double lung transplant. I am but one of them and deciding which one gets any given set of viable lungs doesn't come down to some single chart with people shuffling up and down in terms of priority.
The reality is that they start with absolutely everyone in mind and go through the criteria for a match. Regular readers will know that this is a five point match process where blood type, tissue type, size, shape and antibody screen are taken into account. The tissue type criteria can be subdivided further, as can the blood and antibody factors so when it comes down to it there may only be a couple of patients who actually are viable for the transplant of this given set of lungs. Then I suppose you could argue that a priority list exists where the transplant team would have to make a balanced decision on which patient needs them the most urgently.
I am acutely aware that I am difficult to pair up because I have O- blood which is great if you're wanting to donate blood as anybody can receive it but not so good for me if I want to receive anything in return. I account for only about 7% of the population and when you consider that only about 25% of the lungs harvested are actually viable for use due to disease and lifetimes of unwitting misuse then you start to understand why I haven't been called yet. 7% of 25% isn't a very impressive chance of a match. Mercifully one of the other factors, the antibodies, I have mercifully few that would cause a conflict so it is very much swings and roundabouts on the statistical front. Having mentioned that it is the antibodies where I have come up short a couple of times when I got close to being considered for transplant.
It's at times like that where I consider an episode of the American TV show The West Wing where the president's chief of staff is trying to convince the president of the merits of a new missile defence system and the test goes wrong. When asked how much the missile misses by the president is told 137 to which he replies that 137 feet is quite impressive only to be told that it was actually 137 miles. It is at this point that he is reminded that once you miss a missile that is headed your way it doesn't really matter how close you got to stopping it.
You see, you have to understand that there's no point in trying to force the issue and maybe pushing through a transplant where the matching antibodies are on the cusp of being in the wrong because, although the transplant itself may go perfectly fine, you'd reject the lungs. This is where I learn to remain patient. It doesn't always come easy and I get as frustrated as all those people whom I have to tell that I am still waiting for the call and they tell me that my time is coming. It's a conversational cliché that we just have to use because addressing the utter despair of how difficult it is is just too hard for both me and them.
This is how I avoid misery and, ultimately, depression. But it is on that front that I have an admission to make. After my last blog post about how proud I was about how well I have been coping with the wait I'm all of a sudden struggling somewhat with the whole patience thing. As you have just seen I can still explain fairly coherently why my wait for a set of lungs is simply down to statistical likelihood and not at all down to the universe conspiring against me. Each month that passes though leads to a tiny advance of the bronchiolitis, and that is my main issue. It's a progressive condition so I need to get a set of lungs before the disease advances so far that I become too sick that I wouldn't be strong enough for the surgery. This is beginning to upset me and is starting to affect my life in ways I never imagined it could. I have times where I can be genuinely mean spirited about the happiness of others. Now don't get me wrong, it's not overwhelming bitterness but deep within the genuine happiness I have for the people in my life when something good happens to them there is a tiny kernel saying 'Why not me?'. The day I recognised that I was doing this, filled with shame, I called the transplant co-ordinator to ask her what to do regarding my mental state prior to transplant. She said that to be seen by their psychiatrists I would have to go down there which is just not practical so we decided that at my next clinic appointment with my bone marrow team that I would ask them what their protocol is for those patients waiting transplant. I have no prior experience of that, considering from diagnosis to transplant was only about three months for me the last time.
In the meantime I have opened up to a few friends about just how much of a struggle it has been recently, both mentally and physically. The physical side is just a matter of getting through the winter unscathed and with my weight being almost as high as at any point in my life, including when on steroids, I am strong enough immunologically to fight off infections much easier than in previous years, which is fantastic. The only other physical thing that is an issue is just how long I have to sleep every day. I guess it is my body telling me that it needs rest but it is very infuriating and even when I am awake I don't have the physical strength to do a lot of the things I would wish to do. That's not to say I am completely housebound or anything and actually stopping to think about it I've done more in the past 6 months than any other comparable period since first taking ill but that's the thing. The more I do, the more I want to do and then when I can't do something I had planned it just frustrates me even more than it would if I hadn't planned it.
For what it's worth the friends I have spoken with about my condition have all been quick to point out that my responses are natural and that it is actually to my credit that it has taken till now for me to see what they have long perceived to be the great injustice of control of my life being wrenched away from me. It seems everyone else has been getting furious on my behalf about it all, which is incredibly sweet.
One of the things I have been doing is repairing something that has annoyed me for quite some time. I have a tattoo of a Celtic cross on my back and much though it is a reminder of my time in Cardiff, it wasn't done as symmetrically or as perfectly centrally as someone as pedantic as me would like. So I've silently let it annoy me every time I catch sight of it in the mirror. The TV show Tattoo Fixers prompted the idea of getting someone to have a look and see what we could do with it so I have now had 5 laser sessions to fade the existing tattoo in preparation for a cover up. The following pic is the starting point I gave my tattooist and last Saturday he presented me with his drawings of what he has in mind. It'll cover a pretty large section of my back to give you some sense of scale and the colours are getting a total reworking as well as it being a more symmetrical affair but here is the starting point
Yes, of course it's a Phoenix. What else would suit me more?
