T+133 yesterday and I was back at LRI for another weekly haematology consultation and another bone marrow aspiration (no trephine this time). It seems that I'm doing quite well - they stopped the "you'll probably be on these forever" anti-rejection Ciclosporin, stopped the Folic Acid and told me that the Isavuconazole can stop when I've finished taking my current stock. Bloods are good, and the Serum Ferritin is decreasing without provocation.
Of course, all this means that I'll be taking a managed risk from now on, but I'm sure that they will be there to catch me if my parachute fails.
They're pleased that I've arrested the weight-loss but say that I still need to work at putting on a few more pounds each week. If I start losing again, I'll be admitted and fed via a "nose-hose" (nasogastric tube). The advice from my haematologist and from my dietitian is to "eat lots of crap food", which flies in the face of the healthy-eating advice given by the cardio team. I think I've struck a fair balance... I'm getting decent mileage from large doner kebabs with salad and chili sauce, and the... ahem... occasional Guinness 🙂
I must admit that I'm perplexed by their parameters for my weight-increase efforts... my current weight and BMI are well within the healthy range for a bloke of my age, height, ethnicity and activity level, yet they have set a target well above the NHS guidelines, and the cut-off for the "nose-hose" is slap-bang in the middle of the healthy range.
Maybe they're fattening me up for Christmas?
THE SMALL(ish) PRINT... (updated 23/07/2016)
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