I thought it was about time I wrote an update on my medical situation, a long overdue follow up to Corona Confusion Redux back in June 2020. To recap: my scheduled May Nephrology Clinic appointment was skipped from the list on the day (it was supposed to be a telephone call, and before that a video call), and I'd been given a new appointment for November. I received a letter from the clinic saying things were okay based on the May tests, without any specific details of what that meant. My GP increased my blood pressure medication after I raised some concerns with him, and I subsequently received a blood test form for the November appointment which was missing half the regular tests. So, there were lot of unanswered questions.
In July my scheduled November appointment was cancelled, to be rescheduled for some indeterminate point in the future. This worried me as it meant over a year would pass without access to a Consultant Neprhologist. I realised I shouldn't moan too much, Covid-19 has put others in a far worse situation in regards management of chronic conditions, but part of the reason I'm in this situation is because a series of warning signs were overlooked during my twenties and thirties. At my last appointment I was told I might get between three and five years before I need a transplant, but any serious illness would radically reduce that timeline. I'm lucky that the programme I've followed over the last ten years has radically slowed the decline in kidney function, but I'm close to a tipping point where one serious bout of illness may be enough to bring on end stage.
Fast forward to October and I had my annual medical review with the GP, it was a few months later than normal, and done as a blood test and telephone consultation with a nurse, but it was better than nothing. Generally speaking, all was fine, or at least what passes for fine in someone with my condition, cholesterol had improved and my weight loss means I've even fallen back out of the pre-diabetic range again. I mentioned my concerns around the kidney appointments, which prompted a call from the GP to reassure me there was no immediate danger and as long as I wasn't being discharged I shouldn't worry. He did suggest that the recent bloods might trigger some activity from the Nephrology clinic, but if I didn't hear anything by the New Year he'd write a letter.
Sure enough in early November I got a call from the Nephrology clinic informing me they'd sent a telephone appointment for the end of the month, but they were going to bring it forward to the 10th as a slot had opened up and I had recent bloods. So, almost a year after my last appointment I got to speak to a consultant. In summary there has been a small dip in my function, nothing major, and within the range of previous fluctuations, but enough to put me back on a three-month appointment cycle. Well, that was the plan, as is the way of the ‘new normal’ that appointment has since been pushed back a month to March, I wouldn’t bet against it being moved back again.
I recognise Covid-19 has turned the world upside down, and I’m really lucky that I’m not end stage right now. On the other hand, I’m acutely aware I have no safety buffer anymore, it’s been made clear to me that one serious bout of illness could be enough to push me into end stage. It’s possible I’ve already had the virus, my daughter tested positive before Christmas, albeit she was largely asymptomatic (a day or two of headaches and a lost of taste/smell). My wife, my son and myself all tested negative, but I did subsequently experience a few days of feeling run down which I wrote off as overwork. I’ve made peace with the fact I will end up on dialysis before this decade is out, but I’m not in any hurry to get to that point.