Month +22: So Far, So Good

31 days in, and I appear to have successfully detoxed from caffeine. I was well and truly settled into a routine of a mid-afternoon crash, followed by a nap and few cups of tea before bedtime, sleeping poorly, then re-booting myself the following morning to start the cycle again. I was clearly robbing Peter to pay Paul. The first week was horrible. I had a constant headache and felt sluggish, had difficulty concentrating and ate far too much sugar. However, once those initial few days were out of the way, I picked up. I am still drinking decaf tea and coffee, and I know they contain a little caffeine (about ½mg per-cup as opposed to about 40mg, on average) and if not enough to tickle me, that first coffee of the day is still a great morning treat. Old habits die hard, but so far, so good.

I also had my routine check-up with the Transplant doctor, which resulted in a change to my medication. The medication at the center of my anti-rejection routine is called Tacrolimus (or Tacro for short). The amounts of Tacro that a each patient needs to maintain the correct levels in the blood are different for everyone. I came out of hospital on a relatively high dose (19mg twice daily). This was reduced over time until I found my maintenance level, which was 3.5mg twice daily. I had been on that dose for about a year, however a recent set of bloods revealed that my Tacro level was about half that of the target amount. There had also been a dip in my kidney function. The Doctor decided to bump it up to 4mg twice daily, and to send me for some more tests to make sure they hadn’t over-shot. Too much is also bad.

New Flash! Results just in, and I am happy to report that my Tacro levels are back to normal and kidney function has recovered nicely. Panic over

It’s impossible to say what caused my Tacro levels to drop. Both the external environment, and us fleshy humans are complex systems operating independently of each-other, and some things are best left to science. But I did wonder if it could have been the removal of caffeine from my diet. Initially I thought it unlikely, but I was warned from the outset of my treatment that introducing things to my system (such as food supplements or other drugs) could have detrimental effects on my biochemistry – potentially altering the way my anti-rejection drugs work. And caffeine is most definitely a drug. Mild by most standards, and often forgotten, but it has potent effects – to which as my week-long headache can attest. My first post-op coffee (a typical NHS instant creation) was the day after my transplant, which was my first full-day on the new meds. As my balance was found in the presence of caffeine, It stands to reason that removing it could also rock the boat.

If nothing else, it illustrates that the life of a transplant patient is always a delicate balance of ongoing monitoring, medication tweaks, self-control, and moderation.

The only other tangible consequence of ditching the stims is that I now wake up earlier, and feeling more refreshed (despite my watch saying my sleep is still fairly rubbish). Sadly the mid afternoon crash hasn’t gone away, but I put that down to my age. I turned 45 years-old just over a week ago, and was taken out for my first curry since my transplant. I drank mocktails with my friends and was treated like a king for a day. Given the state I was in on my birthday just two years ago, each anniversary is a special, and I am taking any opportunity to party that I can get. Just without Vodka and Red Bull.

In other news I also took part in a clinical trial measuring Covid19 antibodies in Transplant patients. This involved a test similar to the lateral flow tests we are all familiar with, but using blood in stead of nasal scrapings. I am pleased to report that I do have antibodies. Whether these are as a result of having had Covid19 (AKA natural immunity), having been immunised multiple times, or from having artificial antibodies pumped into me, who knows. But I am pleased to see they are there nonetheless. After writing this blog, I’m off to the doctors – they’ve called me in because, in their words, ‘I’ve had too many hospital admissions in the last few years, and they want to make sure I’m OK’. I’m a statistic. It’s good they’re looking after me, but really? Mind you, we shouldn’t complain should we, the NHS are bloody brilliant.


Update: I have now been given a ‘Frailty Score’ and a care plan. I confirmed that I did not need any help going to the toilet and I could get dressed unaided, and was marked as having no additional needs. Phew!


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