I am going to try to articulate something about this here not only because there is space to fill (the rest of the Florida blog will follow in due course whether you like it or you don’t) but also because it might help me. I’m not doing so well.
On Tuesday afternoon I went for my four-monthly visit to the nephrologist. Since 2013 I have turned up there roughly every 12 weeks to discuss the thorny issue of my ongoing kidney disease. That was diagnosed originally in 2007, so for the last 10 years my admittedly battered kidneys have been chugging along well enough for me to function. The usual drill with the nephrologist is a short discussion about what medication I am on, whether to change it or add to it, and then to be sent on my way with instructions to get my blood tested so that there are some results to discuss on my next visit.
From the very start I was told that my kidneys would get worse, and that things like a transplant or dialysis would be likely at some point. So I was expecting to turn up one day and find out that the time had come to consider these things. I wasn’t expecting that day to be Tuesday afternoon. I had a blood test the previous Tuesday in preparation for this appointment. The results of that showed that my kidney function had dropped to a miserable 18%. It has never been more than about 28% in all that time since the diagnosis but, said my specialist, 18% is getting towards the point where they start thinking about a transplant. He warned me that if the function did not spike back above 20% at the time of my next visit then we would have to have that conversation. Start preparing, was the term I think he used.
Now there is a chance that it will improve. It has a history of bouncing up and down a bit over the last 10 years but it has never been as low as 18% before. I don’t usually ask them to give me a percentage figure on it but I could see from the graph that it was at an all-time low. The consultant wanted me to return in six weeks for another test to see if there was any improvement but I wasn’t having any of that. Stubborn as I am, I told him I would come back in December as I would have done anyway, and talk about it then if the situation hasn’t improved. He didn’t seem to have a problem with that so that’s where we are. Hoping for an improvement but unable to do anything to really boost the chances of that beyond remembering to take all of my medication on time and not trying to wing it for more than three or four hours without going for a wee. Simple stuff like this can damage your kidneys.
The thing is that, being me, I can’t help but be extremely negative about the whole shebang. Four or five people have already relayed stories to me about people they know (and one case the person telling the story was doing so from personal experience) who have had kidney transplants and gained a whole new lease of life. It is an indisputable fact that if I have a successful kidney transplant I will be better off than I am now, or better off than I have been at any time during the last four years. I’m less certain about the previous six years because the truth is that after the initial diagnosis I buried my head in the sand and ignored it until I became ill, which duly happened in the summer of 2013 when my potassium levels hit the roof. Even so, even with the firm belief that it would improve the situation I am still filled with dread about the whole idea of a transplant. Dread mixed in with a little bit of bemusement. It is hard to get my head around the idea of putting myself at risk on a surgeon’s table when I don’t feel ill, and in fact feel like I could go on like this for years. It almost feels like I would be taking an unnecessary risk to have the transplant now.
Of course it wouldn’t be now. I’m four months away from that discussion at least, and the consultant said that the average waiting time for a transplant involving a living donor is around six months. So let’s say my function does not improve in the next four months, and that we can immediately find a living donor (I have about 75 cousins who appear to be forming an orderly queue already, crazy people) then we can expect the transplant to take place some time next summer. If the recent decline in function is the start of a trend then who knows how I will feel by then? Maybe at that time I’ll be glad of the opportunity to get rid of my ailing organs and get myself something with a bit more oomph. But if by that time I still feel the way I do now, physically I mean, then I can’t shake the feeling that I’d be taking a risk when it would not be absolutely necessary.
If we are looking for reasons why I always see the negative, apart from my borderline personality disorder and my regular bouts of depression, then look no further than Other Disabled People. Already in my lifetime I have lost more friends and acquaintances with similar disabilities to me than I care to mention. One only this year. He was two years older than I am now. At school, at least once or twice a year you would turn up in the morning to the news that someone you knew in a different class had passed away. On one occasion when the school bus turned up at the house of one young lad to pick him up there was a black van outside the house waiting to take his body away after he had died earlier that morning. It was truly horrific.
There have been varying reasons for their deaths, none of them were down to a failed kidney transplant as it happens. Yet you can’t help but compare yourself to these unfortunate souls. What is it about people with spina bifida and other disabilities that makes them more vulnerable? These people should not have died of the things that took them. They were too young.
The consultant knows none of what I have seen on school buses and in life, and so he was very relaxed about the whole concept of a transplant when he broached the subject. He told me I was still a young man and that a successful transplant is, on average, good for around 10-15 years for a man of my age. And even then you can have another one. Two is apparently common. Some people have three or four. All well and good, but he can afford to be relaxed about it when he has no real investment in the outcome. If it doesn’t work out for me he hasn’t lost anything. It’s left to me to worry about what happens to Emma in particular if I’m not around in a year or two’s time. If you read that last sentence back you will see just how far my negative thinking has got me over the last couple of days. I am considering a return to counselling.
And yet all of it is useless. Not the counselling, which is actually rather helpful in my experience, but the worrying. What’s the point of fretting about something that probably won’t happen? Yes, I’ll probably have to have a transplant one day but the chances of it failing immediately are, I’m told, something like 1 in 100. That’s a 99% chance of some measure of success. After a year, the consultant reckons that the figure of still functioning transplanted kidneys is around 93%. So you can see how the average transplanted kidney is expected to last around 10-15 years. In all likelihood it is a better option than dialysis, which is far too restrictive on your lifestyle for my liking. Surprisingly, the consultant also said that dialysis would be a secondary option to a transplant in my case, and that it would not be necessary until we hit around 8-12% function.
So what I am clumsily coming around to saying is that the odds are heavily in favour of a better situation after transplantation than the one I am in now. Plodding along with function in the low 20’s at best. I’d expect to feel a whole lot better than I do now with a new kidney. I said earlier that I don’t feel ill and that I feel like I could go on like this for years, but I am certainly making do. I don’t have nearly as much energy as I should have and it might just be that I’ve become accustomed to that feeling as the norm and that actually it is abnormal.
You won’t be surprised to learn that I haven’t convinced myself that having a transplant sooner rather than later is the right way to go. I can write it, I can reason with myself and get reassurance from medical experts, but I’m still going to be fairly terrified if I take the decision to have a transplant. Or if that decision is taken for me. Unless we get to a point when I turn a strange colour and feel utterly terrible I will always have the suspicion that I would have been fine if they had left me as I am. My own definition of fine, anyway.
Let’s go back to Florida and try to forget about it and I’ll update you in December.