It's pants
My journey with Myelodysplastic Syndrome and Bone Marrow Transplantation
What's going on? The graft versus host disease (GVHD) is still rumbling but less than it was, although the initial response to a higher dose of cyclosporine didn't boost energy or mouth much so I was started on some steroids (prednisolone 30mg OD) just over a week ago which were .... amazing! The day after the first dose I was able to get out of bed with a spring, less aching, more positivity, got my work brain on and started emailing and catching up on projects. Mid-January I had no desire to leave the house, but in the last few days I have started walking around the park again. My gums are back to pink, but my palate is still sore, inflamed and covered in red spots and tiny cysts, and swallowing medicines is uncomfortable. Rashes are settling but everything still tastes pretty gross, a bit like chewing sandpaper and mud, so I survive on yoghurt, porridge, tinned fruit, energy drinks and pink milk. My mouth also gets pretty dry so I've been given some saliva in a squirt bottle. They tell me it's not donated. I've got some hair on my head, makes life much warmer. New hair is baby soft so I spend plenty of time gently stroking it. Don't judge me, you would too if you could. I had thought January was going to be relatively straightforward and the big news would be the repeat bone marrow biopsy looking for the extent of any residual disease ... but this is going to be topsy turvy so that biopsy is 'on hold' for now. My oral GVHD meant I dropped out of lots of zooms and other meetings I had wanted to do. A friend had given me great advice "to be kind to myself" so I dropped out without feeling my usual guilt of letting people down. But I have been able to join a few meetings and speak, especially on the Butterfly course we released a few months ago. I might blog on that another time but if you want to do the course it's completely free, just lick the link. It means a lot to me that people see it. If you've been paying attention, you'll remember that the BMT gave me a whole new blood AND a whole new (but naive) immune system. All your white cells (neutrophils, lymphocytes etc.) and the antibodies you produce ultimately start in your BM so a transplant resets your immune system back to the beginning. Whilst I'm making red blood cells and platelets and white cells fine, the white cells are troublesome. These new lymphocytes see my body as 'foreign' and try to reject me. Stupid really, if they just stopped to think they'd realise that was an act of mutually assured destruction. The cyclosporine keeps my 'new' immune system under control whilst we learn to be friends. But a consequence of this is that I am "immunosuppressed" - and my usual ability to keep infections under control is limited. It's basically walking a tightrope between infection and getting rejected. Bit like what Amanda did to me. Whilst many of these infections are just lurking around the environment or on passers by, we all carry viruses that hang around in our body forever. These are particularly the herpes family of viruses that reactivate, usually after a bit of stress. Cold sores are herpes that lurk in your nerves and reactivate when you're feeling sad, have to write an essay or stay 10 minutes late after work. Shingles is your chickenpox virus coming back years later. CMV can very occasionally reactivate during pregnancy with devastating consequences for the foetus. Epstein Barr Virus (EBV) gives you glandular fever as a teenager but almost never reactivates in later life, although traces of EBV hang around in the cells at the back of your mouth and throat and your B lymphocytes forever. Risk of viral reactivation post-BMT is well known, so some drugs I take (acyclovir, letermovir) are used prophylactically to prevent some of these, but there isn't an anti-viral for EBV in this way. The level of EBV can be measured on bloods and you could find low numbers in lots of people but 10-20,000 copies is high and 60,000 is getting pretty high. Mine has gone from 6,000 to 9,000 to 32,000 in just 10 days, so I was admitted as a day case a couple of days ago for treatment using a monoclonal antibody (artificially synthesised) which you would expect would directly target the EBV, but in fact targets the B lymphocyte cells that carry it. This is because the real risk here is not infection as such, but what the virus does to B cells. The EBV in the B cells makes them all frisky and they go on a mad one. Un-checked this can lead to a lymphoproliferative disorder, a bit like a lymphoma which is really not good news. The monoclonal antibody is called Ritoximab which has a list of side effects which includes basically anything you can think of, including other virus reactivation (because you're killing off some of your immune system.) Trying to understand what is going on without a medical degree would be pretty complex. Anyhow, it's all been fine so far and the £££ cost, like Stella Artois, is reassuringly expensive so it must be good. Someone needs to take responsibility here. Unlike the MDS which I am happy to put down to bad luck, I most certainly know who is responsible for this clusterfuck of immunological complexity and she's called Amanda. It was the heady summer of 1979. Sony had produced the first Walkman, the 3-mile nuclear accident threatened disaster, and Maggie came to power but I was fully distracted by getting a girl friend. Stuart Hutchinson had gone out with Amanda previously and told me she was 'playful' so I set off on my mission. There was going to be a 'pyjama party' at a friends house in a couple of weeks (life was pretty racey back then) so I needed to make a pre-emptive move fearing I wouldn't be able to compete for her attentions when there were more players on the market. In the late 1970s, cinema's largely existed for teenagers to snog in, and James Bond's Moonraker film was just released (the one with jaws in it). 90 pence each for a ticket was quite steep, especially as you hope you're not going to see much of the film, but she agreed to come along, and we sat in the back row. I'm pleased to report Stuart's inside info was as accurate as Sue Gray's report will be. Party time indeed.
Sadly, a few days later I started feeling quite unwell, nasty tonsillitis and a trip to the GP confirmed I had glandular fever caused by EBV. Amanda had taken the playfulness too far but there was no going back. Not only was I poorly and feeling crap, I couldn't go the pyjama party. I was gutted. She didn't even ring to apologise. She went to the pyjama party where she copped off with Thomas Alcock who bloody fancied himself but I thought he was a twat. He was from the year above and bigger than me, so any thoughts of revenge were put to one side. Bollocks to both of them. Suffering the double rejection of my new graft and Amanda is making this a particularly difficult time for me. I've literally no idea what is going to happen next. The plan is to try and wean both the cyclosporine and steroids bit by bit, spend some more of your taxes on expensive drugs, and do more blood tests. Right, enough chatting, pass the saliva.
19 Comments
Ruurd
1/29/2022 10:47:16 am
Thanks for sharing this update although a bit grim having the past (Armanda and EBV) have along shadow ahead…. And catching you in the current time… but hang in there and enjoy the small treasures in daily life. Take care and kick armanda and EBV…. !
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Amy Wenn
1/29/2022 02:19:58 pm
Couldn’t think of anything better for my taxes to go on than your fancy drugs 🤣 you need to make a book of these blogs eventually Nick, you really are a natural writer!
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Michelle
1/30/2022 01:56:09 pm
Never would you have thought that a 1979 snog would be bringing you problems in 2022! You’ve recalled some fantastic details from way back 🤣 pleased to hear you’re getting a bit of energy back. Synthetic saliva sounds gross 🤢
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Aless
1/31/2022 02:53:02 am
I feel really bad that I enjoy something so much that came from your misfortune! You write like Neil Gaiman; it is delightfully dry, savagely real and satisfyingly tangential for those of us who, like me, have a mind that loves to run amok. Thank you and I'm glad that you've got some energy back. I know you've got no choice but to keep rolling with the punches but you got this.
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Caroline King
2/1/2022 02:33:52 am
Hi Nick, Glad the steroids gave a bit of respite...real bummer that the EBV has lurked around to cause mischief.....hoping that the intricate balance of medications will help you keep it in its place x
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Ems
2/9/2022 05:47:02 am
Just made me feel much better about my recent tax return! Sending lots of love xx
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