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Wednesday 19 March 2014

T + 393. My Kryptonite - Cyto Megalo Virus

Frigging Arseburger and Chips.


Just saw a couple of registrars who had some news for me. When I was admitted on 04/03/2014 the Cyto Megalo Virus count in my blood was 110,000. Yesterday it was 75,000 and today it is 64,000.
When I was previously ill last year with it I was told that at 66,000 it was high so I really was quite fucked by the time I finally caved and admitted myself to Kings College this time 59%ish of people in this country already have  CMV virus inactive or partially dormant in your blood but due the majority of people having half decent immune systems you'd never know it.

For me being post chemo with new bone marrow and having not yet been re-vaccinated for anything, my immune system is what you might call 'shot away' and would struggle to fight off a kitten armed with bubble wrap. The upshot of this is that I probably will not be flying the coop here at Kings any time this week. Based on the figures above and this here calculation that I have made on the back of a fag packet, if the IV Ganciclovir that I'm being given is reducing the level by about 10,000 per day then it could be another week before it's at a level with which the team here are happy.

To recap - for any readers who may be on the path to a transplant here is a schedule of my current meds;

Drug Dosage Type Frequency Used for
Ciclosporin 150mg Immuno supressant Twice daily Fights GVHD
Ganciclovir Dunno Anti-viral Twice daily IV Fights CMV
Budesonide 3mg Steroid Thrice daily Fights colitis
Prednisolone 30mg Steroid Daily Fights colitis
Folic Acid 5mg Vitamin B9 Daily Assists to synthesise and
repair DNA (for mouth ulcers)
Tacrolimus Dunno Immuno supressant Twice daily
mouthwash
Immuno supressant (for mouth ulcers)
Mycophenalate 1g Immuno supressant Twice daily increases Oral Bioavailability
(for mouth ulcers)
Betamethosone 500mcg steroid Daily mouthwash Anti inflammatory immuno
supressant (for mouth ulcers)
Posaconazole 10mg Antifungal Twice daily  I think anti thrush
Pentamidine 25mg Vapourised
inhaler
Antimicrobial Monthly Prophylactic  against
Pneumocystis pneumonia
Zopiclone 7.5mg Nonbenzodiazipene hypnotic agent Nightly Sleeping tablet
Penicillin 500mg Antibacterial Twice daily Prophylactic  antibacterial
Omeprazole 20mg Proton pump inhibitor Twice daily Anti-acid indigestion














As I looked each of these drugs up on wikipedia, I tried to avoid looking at the possible side effects as I am very aware that every possible minor instance of a side effect is mentioned and people end up scaring themselves.. I have to say that I was pretty much destined to have the shits and /or colitis as part of either the CMV or the cure. Ciclovir and ganciclovir  both look pretty dirty and I now know why my eyesight has dropped off over the past year as one of the drugs I read about has a negative impact on eyesight - floaters and soreness so at least I know it will get better when I get off it. I find it a bit bizarre that a bug that is  harmless to 59% of the population and unknown in the  40% balance could lay us guys so low.

Edit: re the reference to 'dirty' drugs above - here I mean this in terms of 'its a dirty job but someone's  gotta do it'. In that the drugs themselves are cytotoxic - cell destructive, to me this means that in order to achieve their primary objective which is the destruction of disease A or infection B there's gonna be some innocent bystanders caught in the crossfire, meaning other bits of your (or in this case my) body.

A bit like being one of the guys in the red Star Trek jerseys.



Looks like Jeannette may be able to come up and see me on Friday with supplies and clean duds - which I will sorely need by then - I've got sets of pyjama trousers starting to do the can-can on their own! I might get a little list together actually- bags of crisps and junk to satisfy this recent horrid urge to eat crap all the time. So although it hasn't been confirmed yet I'm taking a punt that I'll be here until the 26th March. As a concession to healthy eating I've bought an apple from the hospital shop. Might even eat it.

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