Posts tagged 'Acute Myeloid Leukaemia (AML)'

Man or mouse?

Posted by on August 6th 2019 in Health, or lack thereof
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Most people get the EBV when they are young and have few, if any, effects. It doesn't go away, it just sits there doing nothing bad. I've no doubt that I am one of those people.

The problem is that having a stem-cell transplant can leave you open to reactivation of the virus at a time when resistance is low.

So it's no surprise that, after a couple of weeks of having mildly-raised EBV markers (less than 1000, then 2239), on Monday (T+96 days) the marker count was through the roof at >45000 and I was diagnosed with Glandular Fever. With my returning facial hair and swollen neck-glands I look like a rather strange hamster.

Rituximab is the weapon of choice so I had my first of at least three weekly infusions of the stuff yesterday. It's not the most pleasant of cures.

Nearly made it to the T+100 days milestone without a major infection. I would "chin up" if it didn't hurt so much to do so. Ah well. As Matthias said, "Could be worse".

No shit, Sherlock!

Posted by on July 8th 2019 in A bit of a rant, Health, or lack thereof
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As per my recent conversation with the GP surgery's receptionist...

Yes, I know that the results show that I have health issues. When I made the appointment for the first test I told you that the results would be out-of-limits. I told the nurse the same when the samples for that first test were being taken. I know the cause and I'm undergoing the treatment. A further test isn't going to make it any better.

No, I won't be arranging a telephone appointment to discuss the results - I already know what's wrong with me, it's been going on for over three and a half years and is documented in both my GP patient record and my Haematology patient record at LRI.

 

Please RTFM!

Another waste of NHS resources

Posted by on June 26th 2019 in A bit of a rant, Health, or lack thereof
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It's that time of year again - time for my Annual Vascular Review at my GP's Leicestershire-based surgery.

At least once a week I attend the Hambleton Suite at Leicester Royal Infirmary where I have my observations and weight recorded, then I have blood samples taken from my Hickman Line for a full suite of tests, then the line is dressed, then I attend a session with the Senior Specialist Dietitian, then I attend a review with one of the Consultant Haematologists. What they don't know about my body and blood isn't worth knowing.

You'd think that I'd not need to give yet more blood samples to the GP's phlebotomist in order for the Vascular Nurses to have something to work with, but it's not so. They have to take separate samples so that they can send them to their preferred test facility over the county line in Coventry, Warwickshire. That's because the Vascular Nurses' system can't access my Leicestershire hospital records.

Because of this, I have to take up an unnecessary appointment slot to provide unnecessary blood samples for a suite of unnecessary tests. Furthermore, I have to have at least one unnecessary hole in the arm because the GP's phlebotomist is not allowed to take blood samples from my Hickman Line.

I really don't get why there's such a communications block. It's a farce.

By contrast, I also have to attend monthly sessions with the Community Heart Failure Specialist Nurse at Hinckley Health Centre - when she wanted to take bloods for tests I told her that weekly tests were ongoing at the Leicester Royal, and she was able to access their results online within seconds, thus saving time, money, test resources and arm-holes.

So go figure why the NHS is cash-strapped.

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
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