Archive for May 2019

But when he got there, the cupboard was bare…

Posted by on May 28th 2019 in A bit of a rant, Health, or lack thereof
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Chris kindly went over to LRI on Saturday to collect my 25mg Ciclosporin capsules. I mentioned it in clinic today and the consultant understood the issue and gave me a prescription for yet another denomination - 50mg - just in case the dose changes again. Also on that prescription was a request for a month's supply of Isavuconazole, an antifungal drug that I'll be on long-term and which I will run out of at 10pm tonight.

I went to the on-site pharmacy and after a long wait was presented with the 50mg Ciclosporin capsules. The Isavuconazole, however, wasn't in stock. They've had to put in an urgent order which means yet another trip to the hospital tomorrow to collect it.

So, that'll be three trips to LRI on three consecutive days (my next clinic appointment will be on Thursday).

Did nobody tell these people that I'm supposed to be at home getting some R&R?

Variable-dose cock-up

Posted by on May 24th 2019 in A bit of a rant, Health, or lack thereof
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On the subject of Ciclosporin, it's the only drug in my TTO stash that's "variable-dose". In theory they measure what's in me every time I provide a blood sample in clinic, and if the levels aren't right they call me later to tell me to adjust the dose.

Curiously, the never-before-seen specialist registrar that assessed me and my results in Thursday's clinic didn't mention a dose-change despite having the test results right in front of her (yes, the results were available to her because the consultation was 4 hours and ten minutes late).

But a few minutes ago I took a call from one of the BMTU senior nurses... my ciclosporin level was low on Thursday... can I increase the dose from 100mg to 125mg from Saturday morning onwards?

Well, no, I can't. In its infinite wisdom, the hospital pharmacy provided only 100mg capsules when I was discharged, and those capsules can't be divided.

So it's looking like another trip to Leicester tomorrow to collect a prescription for smaller capsules... if they can find a bank-holiday weekend doc to write up the script.

And there I was, looking forward to a relaxing long weekend.

Arse.

Oil-change

Posted by on May 19th 2019 in Health, or lack thereof
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The stem-cells went in on May Day as planned and, apart from a few days of trots, recovery has been tiring but otherwise trouble-free so far. They let me out yesterday after a surprisingly short stay - they were expecting me to be in for another few weeks while battling infections but I do like to confound their expectations 🙂

I'll have to attend clinic at least once a week for many months while they monitor progress. If they pick up the slightest hint of an infection I'll be kept in again until it's sorted. I have to "stay safe" for at least six months after which I will have all of my childhood vaccinations again. No beer and no crowded enclosed spaces until I get the OK, they say 6-12 months 🙁 but I'm taking that to mean that a coke in the beer-garden would be OK - as you know, I do like to take advantage of poorly-defined rules. And they have thoughtfully provided a booklet riddled with poorly-defined rules.

As you'd expect, I'm on a cocktail of drugs. The worst is Ciclosporin, an anti-rejection immunosuppressive agent. While in the BMTU it was started as an IV drug and it had odd effects - various bodily parts (ears, palms of hands, soles of feet, balls) felt sunburn-hot while others (fingers, toes, nose) felt ice-cold. Thankfully that phase is over and now I'm on the oral version. The downside of that is that the capsules smell and taste of stale urine... the phrase "taking the piss" comes to mind.

Just in case you were wondering, the stem-cell donation looked like a bag of gunk from a vacuum-packed beef joint. I had the feeling that Heston could have used it to conjure up an impressive but expensive jus gravy:

 

"Stock" photo