It's pants
My journey with Myelodysplastic Syndrome and Bone Marrow Transplantation
Not going to lie, the start of 2022 has been crap. Things had all been going well, and I was slowly reducing my cyclosporine (CyA). Remember, this is a commonly used immunosuppressive drug that keeps lymphocytes (a type of white cell) under control and is used in most people following a transplant. However, its use following a BMT is unlike use in 'solid organ transplants'. After any organ transplant, your body's immune system will recognise that donor organ as 'foreign' and try and destroy it. This results in inflammation that if left untreated, would slowly result in damage and failure of the new organ, be it kidney or heart etc. That is because your lymphocytes will always recognise it as foreign, so you need to stay on CyA (or similar) forever. If you start to get rejection, then it can be treated by increasing the dose of CyA or adding in new drugs like steroids. This is why getting a well 'matched' donor is important whether it is bone marrow or kidney. Better matches result in less rejection or inflammation. The situation following BMT is almost the opposite of this. In this case, the new donor bone marrow (graft) starts to produce lymphocytes that are initially kept under control by the CyA. This keeps your lymphocyte numbers low, but it also means you are at slightly higher risk of infection (because you are suppressing your immune system). Infections that are particularly problematic are viruses like herpes or CMV, but also more unusual infections like fungus or weird things that used to be seen in people who are HIV+. When you are taking lots of CyA you also won't respond to vaccines very well, so you have to wait to get your COVID vaccine until you are ideally off CyA or on low dose. Over time, the CyA dose is decreased - that started early December and was going OK. However, just after Boxing Day, I first started feeling tired, a bit achey like flu, and then my lips started tingling before becoming a bit painful. I also developed some mild liver inflammation and my CyA dose was increased. Unfortunately, there's a lag time between increasing the CyA and suppressing the lymphocyte activity and within 2-3 days I had developed a really sore mouth. My lips lost their outer layer, turned bright red and swelled. It looked like I'd had collagen fillers. Then the whole of my mouth developed white plaques that slowly coalesced and my gums turned white. They're still white now although the ulcers are settling. Basically, the new donor lymphocytes went on a mad one and turned my mouth into a sewer. They've had a massive party in my mouth without permission AND failed to tidy the mess. The graft was attacking me (host) hence the term GVHD. I was going to take a photo, but even I was grossed out looking at my mouth. My taste buds that had been recovering have taken a beating, and just about every food except for milk and yoghurt tastes disgusting again. I also developed a widespread itchy rash over chest and back, and a very painful purple rash with tiny cysts on my palms. Fortunately I don't have it on the soles of my feet - if I did it would make walking extremely painful. Steroid creams and steroid mouthwashes +++ and good mouthwash to keep it all clean. The tiredness and exhaustion is crippling, not sure why it's so bad, but at its worse, I could hardly sleep; consequently I have done nothing useful for 2 weeks now. That's really irritating me. Not even played the piano.
What next? Not really sure. Important to get this episode of GVHD under control - whilst I can cope with rashes, and my mouth will settle, I don't like the idea of something important like my liver getting hit. We've increased the CyA twice now so I am on the same dose as when first discharged but will need to try and decrease again when things are under control. I've gone from loathing CyA to thinking of it as my temporary saviour! Chronic GVHD is not uncommon, but hopefully if that happens it won't be as severe as this episode. I'm optimistic it will get sorted out, but GVHD can obviously be pretty serious. I'm always looking for silver linings otherwise all of this would be relentlessly depressing, but there is some good news. It means the graft is working well - thanks Mx Donor, I still love you even though you're trying to kill me. I'm sure we can reach a compromise. Also, a strong graft has a slightly better chance of being a strong cuckoo and ousting those malignant host bone marrow stem cells. Slightly less likely for the graft to fail. Still, long way to go, slowly slowly. Rather than share a picture of my mouth, here's a random photo of me biting my brother.
49 Comments
Ruurd
1/10/2022 10:57:34 am
Dear Nik, thanks for the update even though it is not as positive as you want it to be. I wish your graft will accept you finally as a friend rather then the enemy and find a mutual goal of surviving together in some kind of peace! Looks like you were as a young boy to your older brother as a graft versus host……keep up the spirit and all the best for 2022!
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Sally D
1/10/2022 11:50:05 am
I think it’s really good of you to share your journey. As the rest of us ward 35 nurses are, I’m thinking of you and hope your recovery goes well ❤️🩹
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Janette
1/10/2022 11:53:47 am
I am so happy to hear from you ,your fans worry when you go quiet.
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Kit Yin
1/10/2022 12:15:08 pm
Nick, thank you for the update, I'm sorry you're not feeling that great at the moment, but hopefully that graft is taking and it will all work out in the end. Keep positive my lovely, and sending you lots of love. Xx
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Maz
1/10/2022 12:57:03 pm
I hoped your quietness was due to enjoying some much needed family Christmas celebrations. Sorry to hear you have been having a rough time. Sounds very unpleasant I moan when I get 1 mouth ulcer. Love the biting sibling photo love abit of random. Hang in there keep up the wit and show then killer cells what ur made of.
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Tony Ryan
1/10/2022 01:00:20 pm
Thinking of you Nick. Your strong spirit shines through these difficult times.
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Chris vdA
1/10/2022 01:10:32 pm
Dear Nick, sorry to hear your Christmas/NYE holidays weren't the best family time for you as we all had granted you so much. Glad you're doing bit by bit a little better, just as I'm also very glad graft versus humour, writing skills, and optimism has not been lost in the end in the battle field of your chimerism... Though I realize this was probably blurred in the last 2 weeks... Wishing you a very quick recovery and tasteful foods again... (Just thinking of science now, wouldn't human milk be the best mouth washes for your epithelia?😉)
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Leon
1/10/2022 01:25:35 pm
Man! :( a brutal read as was the diagnosis episode.
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NiinaK
1/10/2022 01:31:45 pm
Was just beginning to wonder how you were, and the post pops up. Thank you for writing and sharing, I do hope you get at least a good variety of youghurts… And feel better soon x
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Michelle
1/10/2022 02:34:31 pm
Keep looking for those silver linings Nick! Always remember you have a lot of people rooting for you 💪🏻
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Sam J
1/10/2022 02:48:04 pm
Hi Nick. Great to have another update, sorry it’s not as positive as you hoped. Sounds a rough time for you. Keeping everything crossed you’ll feel better soon. You are often in my thoughts. Take good care of yourself. Xx
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Khalid Haque
1/10/2022 04:49:41 pm
May you always remain blessed and may you and your graft live peacefully together in 2022.
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Chris
1/10/2022 11:20:21 pm
So sorry you have had a rubbish New Year Nick - thinking of you and hoping this all settles down into a perfectly working graft
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Yincent
1/11/2022 12:14:21 am
Here's to a good rest of 2022 for you
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Caroline
1/11/2022 01:54:37 am
Dear Nick, very sorry your Christmas was marred by gvhd...but as you say a good indicator that the graft is working, not alot of consolation, but some! Hope you eventually have a very tasty Christmas dinner once this is all done. You have amazingly fortitude getting through all this, thanks for the updates xx
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Michelle Leonard
1/11/2022 02:15:28 am
Nick you are incredible - I am so saddened to see that you are still suffering - I hope you are on a better road soon and feeling better.
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Lisa L
1/11/2022 04:41:59 am
Thanks for posting an update, it has been a long while since we’d heard anything and I have been thinking of you. Sorry to hear things have been miserable of late, but stay strong and positive even though it must be very difficult. Wishing you all the best
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Jonathan
1/11/2022 08:28:34 am
Nick - so many people are routing for you. So good to have a strong graft, not misbehaving but sounds like it is just making some bad decisions (to quote my 2 year old granddaughter). Hang in there (what choice do you have?) but all good thoughts for you and the family.
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Tomit
1/11/2022 10:05:40 am
Bloody hell, that sounds more than a bit shitty, no wonder I had the mysterious message saying you'd update and then didn't.... for once I don't find cuckoos quite so cruel and I'm rooting for him....just wish you weren't getting the collateral damage!!
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Alexander
1/13/2022 06:33:34 am
It sounds really tough what you are going through. You display such strength, humour and lack of rancor. I hope things improve over the next few weeks. All the best, Alex
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