It’s nine-months to the day since my transplant and it’s been another month of trial-and-error and tests, focusing on recovery and getting used to a new way of living. Timing, they say, is everything and it is certainly the case when it comes to the timing of anti-rejection medications.
Since I was young I have taken daily medication for epilepsy, so developing a routine around medications was not an issue. However the drugs themselves are a different prospect. They all serve a specific purpose, but the one that is central to my treatment is an immune-suppressant called Tacrolimus. Tacrolimus therapy prevents the process of organ rejection by reducing the activity of the immune system, and it requires careful monitoring and management. In the early days of transplant technology, drugs were used to obliterate the immune systems of patients. These were effective, but were a blunt instrument, like using a sledgehammer to crack a nut. This came with it’s own set of problems, not least the fact that with zero immune system, transplant patents would succumb to every virus or bug that happened to float their way.
These days the process is a lot more sophisticated. The amount of a drug you receive can be fine-tuned, which allows the immune system to provide a degree of protection from infection, whilst leaving our precious transplanted organs to work their magic. Every morning and evening I take my medication at strict 12-hour intervals, and every two weeks I have blood tests to ensure my Tacro levels aren’t too high or too low. These tests have to be accurately timed for just before I take my morning dose. This ensures a reliable reading and as both extremes can harm the kidney, it needs to be right. Everyone’s level is different and just lately mine has been too high. I have been in the odd situation where my dose was being reduced while my Tacro levels were rising. This didn’t make much sense to me either, but persistence seems to be paying off. When I came out of hospital I was taking 19mg of Tacro twice a day to maintain immune-suppression. I am now taking 3.5mg twice a day, so I am a lot closer to my target, or base dosage.
Tacrolimus also comes with various inconvenient side-effects, such as itching, an upset stomach, acne, a neuro-toxic tremor, insomnia, and high blood sugar/diabetes, amongst others. The most noticeable of these for me are acne on my face and scalp, and a periodic but pronounced and invasive tremor. I was told I may sometimes feel shaky, but in truth I can often shake like an old man holding a pneumatic drill. Writing is difficult, drinking a hot brew a risky business, and taking a pee standing up a skill I haven’t yet mastered. I am also told that this should lessen as I reach the base dose, and it’s definitely a lot less frequent than it was, but every few days I bear an uncanny resemblance to a man digging a road. Another unintended upshot of this process of trial-and-error is that my biochemistry is being interrogated like never before, and last week a new line of inquiry was uncovered with one of my liver markers going haywire.
It is just one of several markers, and it could be the result of many different things; a historic viral infection that has re-emerged since my immune system has been suppressed, a side effect of some of my drugs (notably a statin), something else genetic, or just one of things things that will go away in time. But it (it being Bilirubin) has been going up since last year and has been abnormally high since January, so I am having yet more tests, and will soon have an ultrasound on my liver to check for anything obviously untoward. Still, I have no symptoms, so we would not have known had I not been under the microscope. The close eye they are keeping on me is very close indeed and for that I am forever grateful. Sometimes tackling these things feel like a game of whack-a-mole and can sound horrendous, but in reality, it’s a blessing is disguise.
In summary it’s safe to report that the recovery is going very well. Last month my kidney function hit new highs and with the end of formal shielding for the clinically vulnerable, I have been allowed to return to the office. This is a major step forward for me, as I have been absent since autumn 2019 and have missed the interaction. Not a lot has changed, but it’s good to be back. I have been running more, and a few weeks ago I ran my fastest 10K in some considerable time. I can also run a half-marathon if I put my mind to it. The brain-fog has not yet lifted completely, but the good people of the transplant team have told me that after 20+ years of being poisoned from the inside, it takes a while, years even, to get rid of all the rubbish that’s lingering in my system. They’ve got my back.
So to end on a typically whimsical note, nine months on, it’s clear that it takes intentional focus to recover from anything. It doesn’t just happen. But it is certainly a lot easier with the support of family and friends, the fine people to make the NHS what it is, and the miracles of modern medicine. I genuinely have no idea what I’m doing and am a long way from getting it all together, so every day I simply get up, count my blessing and hope I don’t cry in public or accidentally call my manager ‘mum’ or something. Life is weird, and hard at times, but I reckon we’re just about doing OK.
Laters…
#R24TRC 