It's pants
My journey with Myelodysplastic Syndrome and Bone Marrow Transplantation
Well, it was a pretty filthy, and long, weekend. Not one I would choose to repeat, but worse things happen at sea as they say. The hangover has gone. Truth be told, I was feeling better on Monday and better still, Tuesday, but I can see I've only got so many chapters in me so wanted to spin it out a bit longer. After the serene beauty of watching the donor cells gently trickle in, all seemed good. Pretty straightforward. Had my myelo-ablative chemo, got the cuckoo onboard, just lie back and relax. However, to stop the new cells going on a total Mad One, and to keep what's left of my immune system from joining the party, you get 'immunosuppressive' medicines - namely Cyclosporin and Mycophenolate mofetil or MMF for short. MMF was discovered by an Italian Bartolomio Gosio in 1893 as a fungus that grew on rotten corn, and having produced it in crystal form Gosio showed that it killed ......Anthrax. Now that could be useful, but no one took the idea up until the 1900s when clever folk found it for the 2nd time and got all the credit. It was finally developed by a South African in the 1970s and has been used as an immunosuppressive since 1990s under name CellCept. It has anti-tumour, -fungal, -bacterial and -viral activity but because it interferes with purine/nucleotide synthesis (DNA type activity) it really screws up lymphocytes (the other main type of white cell aside from neutrophils). Trust me, us medics love these sort of facts. Lymphocytes love to reject transplants. Cyclosporin is also 100% natural, also coming from fungus, this time found in Norwegian soil, 'discovered' in the 1970s (but likely been around a few tens of millions of years) and used widely as immunosuppressive since 1980s. Next time, you see "100% natural" on a food product just think what that could do for you. Given that eating rotten corn or soil is out of the question in a CQC-3*-rated-NHS-trust, these are now of course artificially synthesised and then you get them intravenously. They don't make you feel great, especially the cyclosporin which gives you every side effect you can think of. Everyone reacts differently and maybe I was being feeble, but I had the worst headache ever. On top of that, the infusions each run over 2-3 hours following which there is a loud alarm beep at exactly ear level. Then there's the flush that follows each run over 10-20 minutes before the next one starts. Cue more beeping. And you get CellCept 3x/day and Cyclosporin 2x/day. Oh, and there's the kill-them-all antibiotic Tazocin 3x/day over 20 minutes. Even if the nurses weren't run off their feet (4-5 patients each) you can easily see how starting at 6.30am it takes until 2.30am some days to get through it all. Each time the infusion alarms, I roll over, mute alarm, press call buzzer, healthcare assistant dons apron, gloves, comes in to mute alarm, then goes to tell nurse, alarm beeps - repeat x10 etc. And then there's the regular BP, sats and temperature checks. Sleep deprivation adds to the misery and I apologise for not playing ward staff the piano during those dark days. Along with all those infusions comes a fair amount of fluid. Crawl out of bed, disconnect infusion pumps from wall supply, drag drip stand backward half-crouching, eyes half-shut, arse first, until you feel the toilet. Obsessively wash hands. Realise there's a few more mls of urine you could squeeze out, sit, repeat, hand wash, push drip stand, re-plug, roll into bed. Repeat ad nauseam. Doze off, alarm beeps. And plenty of nausea going with the headache. But finally with a cocktail of more drugs the feelings slowly shifted and by Monday I was feeling better. My blood tests are all fine. Small f fine. No infection so antibiotics stopped, eating better, on oral CellCept and Cyclosporin since Monday afternoon so no infusions (although they just told me I need phosphate infusion overnight, but that'll be fine). Got my appetite back a bit, but packing in the odd Fortisip - need to keep myself anabolic, so my fab-abs will have to remain hidden under their protective lipid layer. Three units packed cells and two of platelets in total so far - not bad [insert tiresome but regular reminder to donate blood here]. Platelets only 30 odd, Hb 90 - no immediate need to do anything.
But, I have no neutrophils, none, zero, nada. Neutrophils are pretty important - once they're made they don't hang around for long normally, but there's always lots of them out there on patrol, checking your defences, just waiting for bacteria. And I have none ... and it's a little scary. I'm in my lovely, en suite, room service 3x/day with laminar air flow and sealed window luxury pad, so there's not a lot getting in here. But we are all teeming with bacteria. Especially in our guts where we have something like 10,000,000,000,000 of them from more than 1000 different species. You've heard it before, but 1kg of our weight is bacteria and we have 100x as much bacterial DNA telling us what to do, compared to human DNA. And they are everywhere, all over your skin, in your ears, your mouth is a veritable cesspit of bacteria - every time you brush or floss you probably push a few into your blood stream. I'm still using the Octenisan Old Spice wash into all my nooks and crannies. Walking very careful. Don't want cuts or bruises, to bite my tongue when eating, chew my nails. I lie very still on bed sometimes imagining that if I keep very still and quiet the bacteria won't find me, and then when they do come I'll dodge them Keanu Reeves Matrix style. I could be over-thinking this. And trust me, I don't see myself as Keanu. More Russell.
12 Comments
Lidia Giudici
10/13/2021 10:33:51 am
Welcome back!!!!! Hope you keep getting better 🙏🙏 It's a "long walk to freedom"
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Maz
10/13/2021 10:35:02 am
See now I feel bad for laughing about your secret abs matrix style antics and 110% understanding of wanting to throw the beeping pumps out the window definitely more so as a parent than a nurse. Every good hangover has to link to a great story so I have everything crossed that this was a dirty weekend worth the sore head. Hang in there and keep your good humour laughter really is great medicine. Xx
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Tomit
10/13/2021 10:49:58 am
Shameful series of one-up-man-ship blogs designed to ensure that I never have anything remotely interesting to talk about at family get togethers now! ;-)
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Joe Cosgrove
10/13/2021 12:14:09 pm
Glad you're avoiding our ward. 😘
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Juliette
10/13/2021 12:15:45 pm
Really gunning for you Nick. Very very very good luck with this challenge. Thank you for your blog I am learning a lot!
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10/13/2021 12:41:57 pm
This sounds so hard Nick, also as you say, so clever. Sometimes necessary cleverness sounds inhuman. Stick in there - so many rooting for you, probably more than you can imagine.
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Michelle
10/13/2021 02:00:24 pm
🙉 infusion pumps designed with a beep not to be ignored, feel for you Nick. Good to read your latest blog,...and very educational! Hope the next few days keep seeing you travelling in the right direction.
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Monica
10/14/2021 01:12:22 am
I’ve learnt so much about medical history and human resilience with this post dear Nick!! I’m sure your microbiome loves you for making it so famous, and won’t dare harming you!! Still praying everyday for you 🙏🏼
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Ruurd van Elburg
10/14/2021 01:07:52 pm
Glad to hear from you again just realize every time I open Facebook hope to hear from you through your blog! Hope you get better a bit and your hiding neutrophils as well! A doctors we know life is not for granted but it is different when it gets to you. Take care and go get them (neutrophils)
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Jiri
10/15/2021 02:15:37 am
Dear Nick, Thank you for this amazing blog that describes all of this from the patient´s point of view. It reminds me how differently we see these situations as treating physicians, never being able to completely understand all the feelings of our patients (until we stand by accident on the other side). You did and you will do a lot for your patients and the fate will always remember this allowing you to overcome all the challenges without complications. You will make it and be healthy again! Cross my fingers for you. Hope to meet you soon to discuss all of this just as "a story of the past".
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Yincent
10/17/2021 02:52:25 pm
Lovely blog Nick. We are all keeping our fingers crossed for you. Hope you get plenty of me time with the electronic piano. Wishing you all the best
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Rene Shen
10/18/2021 01:19:25 am
Dear Nick. Thank you for this admiral and inspirational blog. Very sad to hear about your diagnosis and all that you are going through. Wishing you continued strength and strong spirit to fight through these hardships and hope for a good recovery.
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