Written during an unusual bout of sleeplessnessnessness....
First post for a while as I had been feeling a bit shite due to having recurrences of RSV and CMV. RSV appears to me to be a little kiddie cold/cough virus that most folk with immune systems can fight off fairly easily, however I have learnt to my cost that given the chance it will seriously kick my arse. So now I'm super primed to notice the first tickly throat or runny nose as a sign that the cack is headed fanward and I duly shuffle off to get anti-biotics double quick.
CMV (Cyto Megalo Virus) - er translates as Big Cell Virus and is a bit more tricky to keep down.
This is because I take immuno suppressants to help minimize the effects of GVHD (Graft versus host disease). GVHD is best described as some of the donated stem cells in my system behaving like a party of blue collar types from East End London going on their first package holiday to Spain circa 1972.
If I may clarify, nothing is good enough for these fuckers - nothing's as nice as it is at home, you can't get a decent pint of Watney's Red Barrel and the you have to eat chicken and chips in a basket every bloody meal because you won't touch that 'foreign muck'. It's too hot, too cold, the drains smell funny, you get the shits from the tap water and the poxy waiter in the funny tight trousers keeps making big eyes at your missus. In short not a million miles away from the attitude that these stem cells have. In an unfamiliar environment they have responded by kicking up and giving me ocular and oral GVHD which (again I translate) means eyes like pissholes in the snow and a mouth like the Sarlacc pit, non geeks please feel free to google that.
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| say aahhhh please Mr Storey. |
Anyway, I digress - drug therapy of GVHD means having a shitty immune system, which means I am prone to CMV/RSV (or any bug really) breakouts. Although the effects can be pretty outrageously bad if left untreated I've been lucky enough to get away with just one extended hospital stay when my virology count went haywire. Normal count is between 0 to 200, mine at one point was 360,000 thousand - cue big time gastro-intestinal rebellion, headaches, fatigue and three weeks in hospital. Now bear with me, the treatment for CMV is a drug called valganciclovir, jolly expensive but effective however it has the unfortunate effect of stepping on the levels of blood content, haemoglobin, platelets and white blood cells all drop during the course which means? Yep! further reduced immunity, fatigue and blood transfusions - you do however start to feel better as it gets to grips with the CMV.
Salvation in this respect has been - or appears to be the ECP treatment I receive at Guys Hospital, I've written about this in detail in previous blog entries so if you are unfamiliar with the term get off your arses and read some of the older stuff. The idea here is that ECP can accelerate recovery from GVHD by frazzling the naughty cells with UV light. I've been having treatment since last December and am delighted to have noted that in the past few weeks there has been a real improvement. I am now able to use big boy toothpaste again and even managed a mild chilli pizza the other night with just some minor sobbing.
My eyes are still a bit dodgy, I'm sure that people think I'm back on the piss when I first take my sunnies off - but again I feel there is an incremental improvement with each bout of treatment. So if the ECP works, my immuno suppressants will be reduced, my resistance to infection will increase, I won't get CMV/RSV so I won't need valganciclovir, so my blood levels will go up and I won't need transfusions and there you have it all simple and wrapped up.
Whilst not wanting to jinx myself, I feel the best I have for months which is just as well considering what my family and I have ahead of us in the coming weeks - more of which later.
