I've not written anything in a good wee while, mostly because there hasn't really been a lot going on health-wise. Whilst waiting on a transplant things are in such a state of limbo that it's hard to find anything to say that genuinely constitutes an update.
After a particularly torrid winter period I have had a relatively stable period where I have had little in the way of respiratory distress thankfully. It makes such a massive difference to my life when I remain free of such infections as it means I can plan things with the confidence of knowing I'll be well enough to actually do them. This mostly consists of either going to the pub or going out for meals with friends and family. This sort of thing breaks up my weeks brilliantly.
The flip side of these little doses of normality is that when you do get them you want more of them and it, perhaps curiously, hurts a bit more when you can't make one. It's such a frustrating aspect of things.
If I am finding it hard to find aspects of my life to update people on you may be able to understand why my peers are finding things a bit of a struggle too. Only a few of them seem to be completely at ease with the idea that my transplant will come only when every single criteria for it is met, which could be today or it could be never. Most of the visitors I get in can't believe that I haven't been taken yet as I've been on the list for 3 years now and was waiting to get on it for 3 years before that. It's been a long time coming and lots of people are finding that tough - too tough in fact to express their frustrations at it. I get bitter about it too, partly because it feels like a massive portion of my life has ran away from me - a portion that I had fully expected to be more about settling down and enjoying my life as a teacher. Perhaps even meeting someone with whom I'd like to share all my life. None of that is possible right now and that grates a lot. I don't like not being in control of my own destiny.
I got a letter through recently from the transplant team which further crystallised my thoughts on my place on the list. It reminded me that of the donor lungs harvested, somewhere between 75-80% are rejected instantly That means I'm looking at an even smaller number of viable organs. From there you have to match tissue type and blood type. I am O- blood type which is only 7% of the population. So 7% of about 20% just from looking at those two factors and you're looking at an increasingly unlikely number. Then you have to figure in size and shape and finally you have to look at antibody conflicts, which are another factor for possible rejection. When you look at these numbers altogether the chance of finding a match for me is actually very slim. A press release for the NHS Blood Transfusion and Transplant office highlighted in this last week also that they are getting fewer viable organs for transplant simply because people aren't dying quite as often in the correct manner to be able to use their organs. To put it in another, more blunt, way, not enough young people are dying in road traffic accidents or the likes.
The point I'm making is that I understand why I've had to wait so long. Very few others do. It aggravates them. I get asked often if I know where I am on the list and I then have to disabuse people of the notion that there is some great big preferential order of patients all of whom are against each other, or that you move up and down this list on any given day. The reality is that I'm only in contention with people who have the exact same criteria as I have (blood type, tissue type...) and so if a set that matches my criteria comes up the docs then look at who has the better shot with the set that has become available and also who has the greatest need at that moment. I worry sometimes if my relative good health may work against me on that front, then I remember that my chances of surviving the operation are much better which helps my case. It really is swings and roundabouts with this stuff.
There have been two programmes on the BBC recently about transplants which have been fairly educational The first one was about all types of transplants and was interesting to see how similar they are and also to see the contrasts. Lungs are considered the toughest for what it's worth.
The second show was part two of a series about Great Ormond Street, and so was particularly about children waiting on a lung transplant. As you can imagine from my previous posts on this topic most of them were Cystic Fibrosis patients. This was much more familiar to my own experience and so was a bit tougher to watch but I always try to entice my friends and family to watch these things as it might answer questions they don't necessarily want to ask me. I'm very open with everyone and try to give them as much reality as possible but with some people I need to assess just how much they can handle and tailor my story accordingly. Back on the programme, it was interesting to see the actual surgery taking place and they certainly didn't hold back on showing how utterly wrecked the patients were post operation.
On the topic of TV shows, I was filmed a couple of months back for another of these transplant type shows, although this time it's for Channel 5. I spent a whole afternoon being interviewed on all aspects of my treatment, reaching all the way back to my bone marrow transplant and how it eventually led us here. It was an incredibly tough day with me having to think a lot about many things that I haven't thought about in a long time. It was therefore quite sad when the producers phoned to say that, despite it being very good material (mostly because it was different from the CF patients) they wouldn't be using my piece as two of the other patients they had interviewed had actually been transplanted and they figured it was more important to tell those stories all the way through than to show someone who was still waiting as it would alter the tone of the show. I can't argue with that at all, but I am disappointed in it. The show will be on in early October and I expect it to be brilliant for the likes of me and my peers because it is precisely about patients like me and it will go through the whole process, including surgery and post op recovery.
I was at clinic this week and they are very happy with how well I am keeping, although there is a slight issue with the skin on my face. I have red patches on either cheek that to most would look like a case of roseacea, but which the doctors worry is possibly another bout of graft versus host disease, the chronic condition of my immune system (Our Clare's technically) that refuses to acknowledge that my skin is indeed mine. It doesn't bother me so much except the little hit to the ego of looking a bit older, but I don't want to start using steroid creams on my face just for that so I'm just going to tolerate it for now unless it gets worse in colour or in size.
After nearly a year of trying out different pain medications for my aching limbs and joints we have gone back to square one with some co-codamol and diazepam. The former being for the straightforward pain relief needed in my knees and muscles and the latter as a muscle relaxant. Over the last few weeks I have been in agony with my calf muscles and knee joints in particular so to finally get this sorted will be great. I've tried lots of variations and was happy with none of them. Granted I know the diazepam has the side effect of leaving me feeling a little bit dopey but I reckon that's a small price to pay for comfort. When you consider the other painkillers I tried were leaving me feeling pretty bad too it made little sense to stay on any of them.
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