It's pants
My journey with Myelodysplastic Syndrome and Bone Marrow Transplantation
It's been 3 months since I last blogged and frankly I've not got much to say for myself. I suppose that's good news. The daily handful of medicines is slowly getting smaller. I still go for the ECP 'Disco lights for lymphocytes' treatment every 2 weeks - always a few regulars on the ward to dance with. I've done some podcasts with charities on 'emotional' topics such as breastmilk donation after baby loss, Trisomy 18/13 as well as the Butterfly project, joined some charities as medical advisor, done work with the WHO and am in process of setting up a charity providing funds for QI projects in Africa. That's enough #virtuesignalling . Written a couple of grants, attended numerous project meetings, webinars, a few papers ... even boring myself now. Basically, it turns out that I still love all things neonatal and am still angry (and sad) that NICU was ripped from me 18 months ago. Worried that I might be too out of touch for the acute ITU work so looking for a role on my return that mainly involves me stroking a grey beard and throwing out random comments. It's all feeling rather autumnal and reminds me of this time last year, end of summer holidays, everyone heading back to school or Uni, and me counting the days until I got admitted for my transplant. I was desperate to avoid getting COVID and keeping my fingers crossed that my donor was being equally careful. Looking back I didn't feel especially scared or anxious, but I was very uncertain how it would feel, and how it would turn out. I started making lists of things I would take in with me - exercise bikes, activities ... when in the end, I spent 80% of my time staring at a blank wall. Every time I did something or said goodbye to someone there was a bit of me that wondered whether that was the last time I might do or say that. Especially felt really bad for my family & close friends as if it was somehow my fault. I'm planning to return to work in late October sometime; have had 2 x COVID vaccines but need a 3rd as I'm immunocompromised. Endless Catch22 of trying to book through a system that isn't set up for the complexities post BMT. I'll get 3rd COVID vaccine along with flu vaccine and all my childhood vaccines again (as all that immune memory has gone now) so will have endless sore arms. Going to need supply of "I've been brave stickers". Oral GVHD does funny things - chronic inflammation leading to fibrosis. Still hoping that might get better over time but it might not. Still can't stick my tongue out, or twist it over or do that curling up thing that I used to impress the kids on paediatric wards with or the nurses on a night out. My swallowing is also not right - can't swallow a large mouthful and certain tablets still get stuck. For what it's worth, GVHD seems to have similar constellation of symptoms to Sjogrens. Systemic chronic inflammatory process might also explain why I still get tired. For the 6-8 months prior to transplant I was anaemic - normal response to this is to increase iron absorption. Coupled with the few blood transfusions I received has meant that my liver got iron overloaded. Normal ferritin (measure of iron stores) is around 25-250 whereas mine was 3000. High levels of ferritin eventually damage the liver. Once iron is in your liver you can't get it out except by making red cells that require lots of iron - so every time I get ECP they also venesect me 500mLs. When they stop the ECP I have locally-farmed leeches lined up. I pulled the corner of a finger nail the other day and licked the blood - it didn't taste nice and felt a little odd, as it's not really mine. I used to be O NEG and I've changed to O POS. I'm not sure that explains the difference in taste. I often catch myself staring at the redness of my palms and thinking that the blood came from someone else's stem cells. I've often thought whether I would choose to find out who my donor was (only if they agreed) and what I might do. Whether I would want to meet them and what I would feel. Can't dwell on that for now, still some way to go. I think many around me imagine I'm almost through it now and want to celebrate. I don't feel like that in the slightest and actually have little interest in seeing most people. Don't take it personally! Silver liningsFortunately there are a few silver linings
I stopped working nights on call when I was first diagnosed because basically it's not possible to jump out of bed at 2am to intubate when you keep fainting with anemia. I won't be going back. I felt a little guilty about my colleagues picking up the extra nights until I calculated that I've done over 5 years of nights since I qualified, almost always working the next day (and often the preceding day) as well. Even if my colleagues pick up 'my' extra nights until I retire they still won't do as many so I've given up feeling guilty. The idea of only working a 40 hour week... I'd had rather disgusting fungal toe nails on big toes for about 10 years. The posaconazole anti-fungal drug I've been on to prevent me dying of systemic Aspergillus infection has done a great job and I now have normal toe nails again. In fairness, the posaconazole for 10 months alone has cost the NHS >£20,000, but still ... The daily steroids have also given me back my 6-pack. Pictures below. I'm having to back off a little now. I've had some grey hair for several years now, but the chemo seems to have destroyed most of my grey hair follicles - like the Tories it presumably attacks the weakest first. Cyclosporin also can make you a little hairy and more curly, so as the hair came back in it seems much less grey and bushier. I'm calling this "peak hair". It may not last.
7 Comments
Juliette
9/5/2022 12:08:33 pm
Aww Nick great to hear from you and delighted toe nails are resplendent!
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Ruurd
9/5/2022 12:14:06 pm
Thanks Nick for sharing this update as always with a twist of humor!
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Marieke
9/5/2022 10:02:30 pm
Just let me know where to get the ‘you’ve been brave stickers’ to and I will replenish your stock!
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Kit Yin
9/6/2022 07:10:45 am
Doing good Nick! And you're worth every penny. And don't feel guilty about putting your team through extra nights, you've done more than enough. Now you have to look after yourself. Lots of love Kit Yin xx
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Andrew
9/18/2022 10:36:03 am
Thank you for the update. Despite the seriousness of the subject your humour always makes me smile, particularly challenging as I am an accountant!
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Caroline king
10/10/2022 12:00:18 pm
Hi Nick, late to respond as didn't get the notification of yr post...will check myself in future! Good to hear steady progress, if slow. Hope return to work goes according to plan x
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11/23/2023 03:47:52 pm
The side effects of a bone marrow transplant can be very serious and even life-threatening. The medical team will monitor you very carefully during this time. It takes the necessary steps to prevent side effects and treats them quickly if they occur. Children usually experience less serious side effects than adults and usually recover more quickly. But it is difficult to say exactly the side effects that a child will experience, how long it will last, and when it will recover.
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