Tuesday 15 October 2019

The Transplant Situation

Strap yourselves in this might get personal. I went to see the surgeon today. I don’t write about this a lot because of its personal nature and its lack of scope for comedy. So - spoiler alert - I’m having a kidney transplant.

This is the third time I have seen the surgeon in the calendar year of 2019. The first time was in January when I was at 10% kidney function and had spent large parts of Christmas Day asleep in my old room at my mum’s house. I’d also spent a day in early January at A & E at Whiston with heart palpitations which I had thought were linked to my previous in the field of high potassium but were not. They sent me home reassured that my kidney function had not altered significantly but without a satisfactory explanation as to the cause. I was signed off work for a month.

It was around that time that I first met Mr Ridgeway, the transplant surgeon. Dan. I can’t get used to calling him Dan. Because I don’t know him well enough it makes me think about Stephen Mangan’s character in that episode of ‘I’m Alan Partridge’ where Alan thinks that he and Dan have become friends only for Dan to blank him in that cringeworthy scene in which Alan just keeps shouting Dan’s name.

Once I had met Mr Ridgeway the race was on to have the transplant before I had to start dialysis. If you think a transplant is a big deal I can assure you it is preferable to dialysis for me. That shit changes lives. I work full time. I travel, sometimes on a whim and I have other commitments like the radio show and - in a not unrelated twist - attending Saints games to consider. I don’t have time to spend four hours a day, three days a week hooked up to a machine. Even if there are days when I wonder whether that might be better than working.

The good news is I’m winning that race. For reasons that even the many brilliant medical people I have met cannot explain my kidney function started to spike back northwards in the first quarter of 2019. Like Gerry Cinnamon’s popularity it was going up but nobody knew why. From 10% in November 2018 it had recovered to 13% in April 2019, to 14% in May and then again in July which is the last time I had it tested. I am seeing the nephrologist in 10 days time (I am currently under more medical consultants than David Beckham was when he broke the world’s most talked about metatarsal before the 2002 World Cup) and it will be tested again then.

That is normally like running the gauntlet. Not that I have ever run a gauntlet. Or anything or anywhere else. But you understand the metaphor. It’s scary because any test result that they don’t like could lead to a serious discussion about dialysis. I was having those kinds of conversations when my function hit 10% which was especially hard because the weird thing is that by and large I don’t feel ill. I don’t feel great which I’ll come to but there’s no nausea. I don’t throw up regularly. I haven’t turned the colour of Homer Simpson. It’s one thing to be told that you have a disease that will kill you slowly without transplantation, it is quite another to get your head around this fact when you still feel fit enough to go about the rest of your business. I don’t want to feel symptomatic of course but I do sometimes think it would help me make more sense of the whole thing.

So anyway this time I am a little more relaxed about the result because of the discussions I have had with Mr Ridgeway. Today he told me that they are happy that all the tests are complete and that we can expect to have the surgery early in the new year. I say we because my mum is involved in this also. She’s my donor, which may raise a few eyebrows when you have worked out that given my age she must be getting on a bit too. But that is one of the things that you learn when a kidney transplant is something which is happening to you. It doesn’t really matter about the age of the donor.

They are only interested in the health of the kidney that is being donated. They do other general health checks on things like the heart and lungs of both the donor and the recipient but they are just to make sure that you are both fit to undergo surgery. They are thorough with these tests because kidneys are precious resources and they want to make sure that every transplant has the highest possible chance of success, but I have passed them and so has my mum. I suppose what I’m intimating there is that you just need a decent level of health. It is not about fitness as such. You don’t have to be Mo Farah. Sorry Sir Mo. I wouldn’t want to miss an opportunity to remind the racists and extremists that a black Muslim has been knighted for becoming one of Britain’s greatest ever athletes.

We have one more assessment to get through in November. This is basically just a routine check that we are both entering into this for the right reasons and that nobody is coercing, bribing, blackmail or profiting from anybody in any kind of transaction. And that we are sound enough in the mind to make the decision to go ahead. I’m not quite sure how they determine this. If I were designing a test for this it would include rigorous psychological conundrums like ‘Wigan or Man Utd?’, ‘Have you ever agreed with Katie Hopkins?’ and ‘Do you watch I’m A Celebrity?’.

Oh hang on no, not that last one. My mum would probably fall at that hurdle and we’d have to find another donor and restart the whole process of tests and consultations which, by the time of transplantation, will have been going on for 12 months. That’s another of the hidden foibles of the process. It’s one donor at a time. If you have more than one person willing to donate they don’t test them all at the same time. If anyone is found incompatible for any reason you go back to the start. Like the Chinese team in the Women’s 4 x 100m final at the recent World Athletics Championships in Doha. All of which sounds like a particularly vicious game of snakes and ladders but I haven’t had to go through it so I haven’t spent too much time thinking about the consequences of it. I have other potential donors. My dad is as likely to be a match as my mum because I have 50% of each of their DNA. The only reason that my mum was tested first is that my dad needed an operation of his own at the time that testing began. He’s ok now. Just bad timing.

Incidentally for anyone wondering about the prospects of getting a suitable kidney from a live donor a parent is your best bet. They are highly likely to be a reasonable match. There are now ways of making slight differences work which is another bloody medical miracle. Siblings are also a good bet, or any blood relative. This doesn’t rule out anybody who is not a relative. Plenty of people receive kidneys from sadly deceased people whom they have never met. It just increases your chances of a more positive outcome for longer if you are a blood relative of your donor. Even more so if they are still alive.

The procedure itself is slightly more complicated for me than it might be for others. Due to my spina bifida my pelvis is a little crooked so plumbing in a new kidney is not straightforward. They don’t take a bad one out to put a good one in, like they do with parts on a car. They plumb a third one - the good new one - in and just leave the two malfunctioning kidneys where they are. They are useless but they are not doing any harm. They’re like Taylor Swift in that sense. Though a nephrologist will often look at you, shake his head and breath through his teeth when he sees your kidney function. Like a mechanic checking over your battered car engine except because our NHS is free until the Brexiteers get their way and sell it off to Donald Trump he is not doing it to work out what he can charge you for it.

What is required in my circumstances is two operating theatres. One to open me up and have a quick look around to work out the best way of shoehorning a third kidney in there, and another to then go and get my mum’s kidney and bring it over to me to finish the job off. Mr Ridgeway says it will be ‘a long day’ but I’m guessing he means for him performing complex surgery. We’ll be unconscious and so will know nothing about it after we are asked to breath into the mask and count.

It is afterwards that I face my challenges. I was relieved to find out today also that I’ll only be in hospital for 10 days or so. When I saw Mr Ridgeway he told me he had seen cases similar to mine (crooked spines or to use a technical term biffyness) in which patients had been hospitalised for up to five weeks. I am not a great patient so five weeks on a ward is something close to my personal Hell. But in those cases there were underlying conditions that I don’t have so Mr Ridgeway is not expecting my stay to be any longer than two weeks tops.

Recovery takes on average something between eight weeks and three months if you’re talking about getting back to work. During that time I’ll have regular hospital visits to check that everything is working ok and I’ll forever be on anti-rejection drugs which do what you might expect, stop the body rejecting a kidney which is after all a foreign body entering your system even if it comes from a close blood relative. Taking a lot of drugs is not something I am a stranger to. I don’t mean that in a Pete Doherty sort of way. I just mean that I am already on five or six different types of medication to slow down the deterioration of my current kidneys and help with associated conditions like high blood pressure and that old favourite, high potassium. What’s a few more?

The immediate aim is to try and get through to the date of the surgery without going off sick from work. That should be doable, although I confess it is getting a little more difficult now. The itchiness I suffered in the early part of the year (oh, didn’t mention that, kept me awake night after night to the point where I now use medication and cream to combat it) is enjoying a slight resurgence in recent weeks and any sleep lost through that is a major problem. Even when I do sleep well I find that I get tired far more easily than was the case maybe a year ago. It’s starting to frustrate me that I can be sat relaxed watching a game on TV one minute and wake up the next to find that an hour has passed. Unless I’m busy I find it really hard to fight off sleep during the day. Work helps with that because it gives me something that requires more concentration than NFL Sunday or a Test Match, but I don’t know how much longer that will be the case.

The other major symptom, if you can call it a symptom considering what happens to some sufferers of kidney disease is panic attacks. I hadn’t had one since my last stay in hospital for bowel surgery in April until last night. It could have been due to the fact that it was the night before what I anticipated would be my last appointment with Mr Ridgeway before shit gets real. I don’t know. What I do know is that when it happens I get this odd sense of deja vu, as if everything I am seeing and hearing has happened before. At the same time my heart rate speeds up and it feels like my entire body is palpitating as this weird and unpleasant tingle (that’s the best way I can think of to describe it, like a scary tingling feeling) courses through me. I had a particularly unpleasant occurrence this morning while my mum was in with Mr Ridgeway and I was waiting to be brought in. Protocol, apparently. To prevent any of that coercion and bribery stuff I mentioned earlier. However the fact that I got the news I expected and to be honest that I wanted might be the reason why I have not had one since. I don’t feel like I have been over thinking or worrying about today in the day’s leading up to it. I’ve been too busy at Dave Gorman gigs and Grand Finals. This weekend I’m going to see Ben Elton. I just think maybe sometimes these anxieties are subconscious.

I try and play it down and I hope that anyone in a similar situation reading this column may have had some of their worst fears allayed. That anyone wondering whether or not to donate organs before or even after their own death might be encouraged to do so. But it is still kind of a big deal.

3 comments:

Anthony Peel said...

Good luck Ste.

Sue said...

Ste I spoken to you about this in the past and I know you will be back on your wheels, travelling, presenting and writing in no time. I wish you and your mum well. Good luck fellow biff x

Stephen said...

Thank you both. I hope you are doing ok.