I was hospitalised for a week in May 2020 and – again for a week – in July 2021. On both occasions, my calcium level had suddenly sky-rocketed to a dangerous level which resulted in my kidney function plummeting to a very, very dangerously low level.
The only positive thing to come out of it was that the second hospitalisation resulted in a seven-day series of fairly dramatic blogs. I await offers for the TV sitcom or Netflix movie rights.
Both times when I was hospitalised, after a week of (I think) basically just saline drips, my calcium/kidney function levels returned to non-dangerous though still abnormal levels.
But the doctors had absolutely no idea why the levels had, without warning, suddenly gone mad in the first place.
Subsequently, it was impossible to treat the problem because the cause was completely unknown.
Multiple scans, X-rays, blood tests and bunging radioactive material into my blood stream has failed to find any cause. But it happened twice. Without warning. I am taking no medication to stop it happening again nor to normalise my levels because, with an unknown cause to treat, there can be no treatment.
To add to the confusion, in February 2022, according to a blood test, without warning, my calcium level suddenly returned to pretty-much normal and my kidney function – although not 100% right – became reasonable, not dangerous and it seems to be stable. My kidney consultant said, at first, he thought he had been given the wrong patient’s results. He and my calcium consultant told me the cause of the suddenly-improved results were a total mystery to them.
The latest idea to try and find out what is going on is that I am going to be given a genetic blood test. Apparently this costs the NHS “a few thousand pounds”.
I seem to have a main kidney consultant and a second, associated, kidney consultant. In a video call yesterday, the latter told me:
“There are some genetic tests we want to do. You’ve been through every test in the book and no-one’s figured it out. It would be a useful thing to do. We’re just looking at a certain panel of genes.
“The thing about genetic tests,” he added, “is they can sometimes throw up unexpected results or sometimes unwanted results. It’s unlikely in this case, because we’re not looking at everything; we’re only looking at things to do with calcium – the panel of genes that control calcium.
“But, even then, we have to warn you that there’s a possibility it could throw up unexpected results, OK? Theoretically that could have implications for family members.”
I am uncertain whether or not this means I could discover I am related to Adolf Hitler or that I am a member of a previously-unknown alien race.
“The results,” the doctor told me, “could take ages: it could take six months, something like that. It’s not going to be fast; and then we’ll take it from there. It’s going to be very exciting to try and find the results. You’re only the third patient I’m doing this on.”
I’m not sure whether I should be gratified or worried by that.
One thing no-one seems interested in is that I felt ‘light-headed’ – a sort of woozy, floating, uncertainly-balanced feeling inside my head – in the lead-up to my first hospitalisation in May 2020 and this continued until roughly New Year this year, 2022.
In March 2021 – in fact, for a few months – I had occasional, very serious vertigo – having to hold on to the walls or anything static to avoid falling over while the world whizzed around me. This went away after a few months but the slightly unbalanced and unbalancing feeling inside my head continued until…
In around October 2022, on a whim, I started drinking a can of Red Bull in the morning.
As soon as I started doing this, the wooziness in my head decreased then stopped and, since then, I drink a can of Red Bull every morning with breakfast. My balance is better; in fact, my balance is now fine.
I never drank any Red Bull between the lead-up to May 2020 and October 2022 (remember I was hospitalised again in July 2021). So the Red Bull could not have contributed to my problems but, bizarrely, it seems to have helped alleviate some (I guess side) effects.
I think I have read that Red Bull – basically it’s caffeine and sugar – can be dangerous because it speeds up the heart. But, as my heart beats quite slowly – in the low 50bpm when resting – this might not be a bad thing.
One response to “Medical update. Genetic testing, maybe “unexpected results” and Red Bull…”
“is they can sometimes throw up unexpected results or sometimes unwanted results.”…. My sisters (3) were concerned about the amount of breast cancer in our family. It had seen off multiple aunts, cousins, a granny and Mum. So gene tests were undertaken looking for a culprit. Only 1 was found to possess the nasty “BRCA” and as a result had a preventative double mastectomy… with a fine rebuild done at the same time.
She has a T shirt that proclaims…. “Yes, they’re false. My real ones tried to kill me”