[wenlock00]

Re: In-home activities while recovering from an SCT

by wenlock00 on Sat Oct 21, 2017 1:53 pm

I left hospital at day +15 after an inpatient stem cell transplant. I initially felt pretty good, was able to drive and do a walk, go to hospital for tests, etc. Around Day +20, I started to feel very fatigued with lots of activity (bone pain, itching) going on in the bone marrow, e.g. skull, spine, lower back. My blood pressure had started to reduce significantly (below 100) and hypotension was a big problem. I stopped taking my blood pressure medication and it has started to normalise, though I still get some hypotension.

My paraprotein was last recorded on Day +19 and was 2 g/l (0.2 g/dL). I have read somewhere that the half-life is something like 21 days and can take 3 months to clear the blood stream.

I am now at Day +37 and still need to nap every day and the bone marrow remains active. My platelets remain low. My ability to go for a walk has improved somewhat, but there is still a long way to go. My weight has dropped significantly, and this has helped normalise my blood sugar levels.

To be honest, I am finding this second phase tougher than the first 15 days of the stem cell trans­plant. I continue to take things one day at a time, I am not sure I would want to go through this again.