Medical update. Genetic testing, maybe “unexpected results” and Red Bull…

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.

That was the weak… Being unbalanced maybe with vertigo in a time of COVID

This is more of a self-centred, up-my-own-arse aide-mémoire diary entry for myself than a blog for others. Proceed with caution and without anticipation. You have been warned…

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A page from Kurt Vonnegut’s “Slaughterhouse-Five”

MONDAY 11th JANUARY

Tonight, around 9.30pm or 10.30pm, I became unbalanced.

Dizzy is not the word. The world around me was not spinning. But I was very swoony. Inside my head. I felt I was going to overbalance and fall over. In my house, if I walked across my living room, if I went upstairs or downstairs, I felt I was going to fall over and had to touch the walls to stay upright.

Since I was in hospital for one week in May (with an abnormally high calcium level and dangerously low kidney function) I had been waking up at least once every hour during the night with the interior of my mouth bone dry. No spittle, no lubrication, just totally Sahara Desert type dry. My dry tongue would feel it was stuck to the dry roof of my mouth or inside of the cheek. I had to drink water to lubricate my mouth and this, of course, meant I was having to go to the toilet a fair number of times during the night.

TUESDAY 12th JANUARY

Last night, if I stayed still and horizontal in bed I was OK but, if I stood up and walked into the bathroom, my balance went haywire. I needed the reassurance of nearby walls to touch as the inside of my head was all over the place.

It was the same thing this morning.

Not dizziness as such but a bit like being drunk (which I’ve only been twice in my life, in my long-ago twenties) – I was a bit sway-ey when I moved around. My foot-placement and balance were not 100% under my control.

This was pretty obviously NOT the COVID virus – I had no temperature, no new persistent cough, no loss of taste/smell – but I was unbalanced.

I thought: I’ll phone my local doctor tomorrow if I’m still feeling this way then.

Getting access to a GP during the current Coronavirus problems in the UK is not easy, as I know from my experience back in May. They don’t really want to talk to you; too much hassle.

This afternoon, I phoned my friend Lynn, whose husband has a slight medical background. She thought what I thought: that it was a dramatic symptom but probably something to do with an infection of the inner ear – BPPV, she suggested – when crystals in the ear dislodge. She said what I was feeling was vertigo and it might well resolve itself. She suggested I try the Epley Manoeuvre which aims to sort out the crystal problem.

There were some videos online. 

When I looked up BPPV online (never look up anything medical online) it turned out the loosened crystals involved are calcium crystals. I did not find this reassuring given my calcium problems back in May.

I talked to someone else I know. “Definitely sounds like vertigo,” she said. “I get vertigo attacks a couple of times a year as a result of having Meniere’s Disease. Usually brought on by dehydration in my case.”

Ah, I thought. Dehydration is why I have been waking up virtually every hour every night for about the last six months!

I had never thought of the word Vertigo until Lynn mentioned it but, when she said it, a lightbulb lit up in my head. Ping!

If lightbulbs go Ping!

I used to think I was frightened of heights but, after flying in a bubble-nosed helicopter in the US and travelling in multiple cable cars in Switzerland, I eventually realised I was not literally frightened of heights. I was frightened of overbalancing and falling… because of something that happened in my childhood.

To this day, I cannot walk across the Wibbly Wobbly footbridge or the Hungerford footbridge across the River Thames. They have no visible means of support when you are on them and I panic; I can almost feel the levels in my ears go out of control and I want to throw myself down on the surface of the bridges for safety.

This overbalancing feeling was like that… and a bit like part of what I felt before I was taken into hospital in May. Lightheaded. Unbalanced.

A week of saline drips back then got my kidney function up to a less dangerous level. 

Since then, I have been an outpatient of the local hospital’s Kidney Man and seen his mate the Calcium Man; though neither took any obvious interest in my constantly waking with a dry mouth. And no-one has found what caused my sudden kidney/calcium problem. 

I am scheduled to see the Kidney Man again in February, the Respiratory Team in May, the Calcium Man in June and, yet to be scheduled, an Ear, Nose & Throat person. All hoping they might find a cause for what happened in May.

It seems easier to see them than to get through to a GP…

Anyway, throughout Tuesday, I spent the day in bed and was still unbalanced whenever I got up to go to the loo.

I thought: I’ll phone my local doctor tomorrow if I’m still feeling this way then.

But do I trust my GP even if I can get hold of him? Not really.

WEDNESDAY 13th JANUARY 

I spent another day in bed but was maybe 60% less unbalanced when I was up and going to the toilet.

I stayed in bed until around teatime, then went out and walked to the nearby shops and back. I was a bit meander-y with slightly uncertain footing and, on the way back, my body felt very hot internally – inside the torso – which, I think, was just because I had over-exerted myself. It was only a 10 or 15 minute walk.

(Look, I told you in advance this is more of a self-centred, up-my-owm-arse diary entry for myself rather than something of interest to others. You were warned…)

Back home, I booked a COVID test just in case. I had none of the main symptoms, but my post-May symptoms sufficed. I also managed to slightly twist my lower spine by bending down to pick something up – never a good thing to do since I got hit by a truck while standing on a pavement in Borehamwood in 1991. So I had to sleep on the floor tonight.

(Like I said in the brackets above, you were warned…)

THURSDAY 14th JANUARY

Same as yesterday.

I stayed in bed until around teatime, then got up and walked to the nearby shops and back. I was a bit meander-y with slightly uncertain footing and, on the way back, my body felt very hot internally – inside the torso – which, I think, was just because I had over-exerted myself. It was only a 10 or 15 minute walk.

Yup, like I said, same as yesterday.

Though my balance was very slightly better.

I thought: Shall I phone my local doctor tomorrow? I think I’m feeling slightly better.

I didn’t phone.

I slept on the floor overnight, to try to mend my back.

It was all getting a bit samey.

FRIDAY 15th JANUARY

My balance was slightly better.

I thought: Is it worth phoning my local doctor with all the hassle and evasion that will involve?

I didn’t.

I took the self-administered COVID test which had now arrived and sent it off.

I slept on the floor overnight, to try to mend my back.

SATURDAY 16th JANUARY 

My balance was slightly better.

I slept on the floor overnight, to try to mend my back. 

SUNDAY 17th JANUARY

My COVID test result arrived by email and was unsurprisingly negative. That’s my seventh negative test, including three during my week in hospital in May. Did I mention I had been in hospital in May?

My back had mended. But the back of my neck and right shoulder remained occasionally painful. That has been going on for about the last three or four weeks and is, like my spinal problem,  connected with the after-effects of the being-hit-by-a-truck incident in 1991. I may not have mentioned that incident…

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Those were my travails over that one week.

But they were minor and mean bugger-all. They are mild inconveniences. Over that same week, the DAILY death figures from COVID in the UK were around 1,000 to 1,500. The following week, they got up to 1,600 and 1,800 deaths per day.

At the time of writing this, there have been – as of yesterday – 97,329 deaths due to COVID – another 1,348 yesterday; and the number of COVID patients on mechanical ventilators in UK hospitals has passed 4,000 for the first time – 4,076, according to the BBC.

I know someone who had COVID very badly at the beginning of last year and, about a fortnight ago… one day… two of his toes fell off. One of his big toes and another toe. 

It kinda puts my problems of a dry mouth and being a bit unsteady on my feet fnto perspective.

Apparently what sometimes/often happens when a person is critically ill and on a life support ventilator – which he was for months – is that drugs called vasopressors are used to support the patient’s blood pressure. He had to have vasopressors for a long time to keep him alive. These drugs constrict the blood vessels in order to increase blood pressure, so that blood circulates through the vital organs to keep them alive. 

A horrible side effect of directing blood to the central organs is that it can induce ischemia (reduced blood supply) to the extremities. The toes are most commonly affected but some COVID patients have lost fingers. 

In his case, his whole feet were affected. The nerves in his feet were damaged by lack of blood supply and they were in constant pain. The toes on one foot did not recover from lack of blood supply and turned black. Rather than amputating the affected toes, the doctors decided to leave them to ‘auto-amputate’, which is considered safer than surgery. 

The process tends to take about a year – in this case it took ten months. 

Even though he knew it was going to happen, it was obviously mentally traumatic. 

Two of his toes fell off.

Apparently another two will follow.

So my minor ailments are nothing.

Life is shit.

All shit is comparative.