It's pants
My journey with Myelodysplastic Syndrome and Bone Marrow Transplantation
Over the years, I rarely donated blood - I always seemed to find excuses - and now feel Really Bad about that. More than that, I'm O NEGATIVE meaning my blood would have been really useful as it lacks the antibodies you get in rhesus positive or AB blood types. I did sign up years ago to be an organ donor, but to be honest don't know if I ever registered as a bone marrow donor. As a paediatric registrar in the 1990s I helped organise BMTs in children using the Anthony Nolan Trust. And for the last 30 years I have prescribed literally thousands of life-saving blood or platelet transfusions to my babies. Organ or blood donation is one of the most amazing things people do. If I can persuade just one of you to donate blood and/or join the bone marrow register it will go some way to assuaging my guilt! Contact Anthony Nolan or NHS bone marrow registries, or your own country registries if you're outside UK. Giving blood is easy and will make you feel amazing too. Do it.
When I presented in February my haemoglobin (Hb) was 87 and platelets 77. Typical Hb for someone like me would be 160-170, and platelets >200. Since then, I've been on weekly subcut injections of Darbopoetin = long acting Epo, which is the hormone that stimulates red cell production in the BM. Same drug Lance Armstrong and many others cheated with. Since then, my Hb has drifted along 90-100 but platelets have slowly dropped to 55. Trying to exercise, or just walk up stairs when you only have 60% of your normal oxygen carrying capacity makes you short of breath pretty quickly. It's a weird sensation - at rest I feel sort of OK, when I run, I am fine for about 4-5 seconds, I don't feel weak, but then the muscles can't replenish the oxygen, and you rapidly enter anaerobic metabolism, and heart rate hits 160+ pretty quickly. Despite what many of you probably think, the oxygen (O) you breathe in doesn't appear as the O in the CO2 you breathe out. Your CO2 comes from cellular metabolism of glucose and some amino acids. The O you breathe in combines with the hydrogen (H+) generated in your cells to form water (H2O) which is harmless. Without oxygen, the H+ builds up, and you get acidotic. That's what the muscle 'burn' is due to when you exercise hard. In the weeks prior to diagnosis, I was still pushing myself to run up hills. I was convinced I was just un-fit and getting old, and just needed to pull myself together. When your blood can't carry any more oxygen to the muscles, your body responds by increasing cardiac output - pumping harder and faster. That gets the same amount of blood and oxygen going around the system more quickly, increasing supply to the tissues. But there's a point beyond which you can't increase cardiac output further, and you stop delivering sufficient oxygen to all your tissues including your brain. At this point, you become light-headed. If you happened to be cycling to work up a hill, then you start to pass out and fall off your bike. The correct response at that point is to see a doctor, not to tell yourself you're a lazy, un-fit b*stard who needs to try harder. Lesson learned. A little too late. Platelets are tiny cells that help blood clot along with clotting factors, proteins like fibrinogen and other clever things. Whilst platelet count in most people is 200-300, you wouldn't know if your platelet count was as low as 50, and much of the time you'll be fine with a level of 20 - unless you get sick, septic or involved in major trauma. Recent studies in neonates taught us that not giving platelet transfusions until the level was as low as 20-50 was better than transfusing at higher levels 50-100. I've looked after lots of babies with levels <20 so I generally felt OK with the 77 I had. But, the first time I got in a car after being diagnosed, I was terrified of crashing, knowing that a stiff bump on the head or cut could kill me. I've also stopped climbing tall ladders and picking fights on a night out. But I do bruise easily, and sometimes without obvious reason. Seeing a bruise on you that has no explanation feels horrible. A visible sign your are properly sick. I've a small one below my eye that appeared yesterday without any reason. There's something unnerving and deeply uncomfortable about your body doing that, like passing blood or your skin changing colour. I don't know who my BM donor is. I think it's possible to find out in 2 years assuming etc. etc.... but whoever you are I am really grateful. I rarely show my emotions, but just thinking about my donor makes me feel quite emotional. Thankfully, people do it all the time. I don't know what I will feel like when I see the donated stem cells going in. Physically it will look just like a bag of blood, and nothing to feel. If it 'works' AND I don't relapse (that's another blog and an event I am dreading) then every red and white blood cell in my body forever will come from someone else. As will every lymphocyte, macrophage and antibody I make. In case you didn't realise (I didn't!), your bone marrow stem cells are of course the 'start' of all your immune system. So this is a little more complex than just getting someone else's stem cells to make my red and white cells and platelets. Altogether a little more profound. And scary. Not afraid to admit I am a little anxious.
1 Comment
Angela Huertas
10/7/2021 04:22:18 pm
Good to know where to donate, loved the scooters and I’m glad you’re not picking up any more fights in the evenings.
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