Managing after donor transplant - looking forwards
19 March 2019
Exactly 3 years to the day after running the first of all the NI parkruns for LLNI, and nearly 2 years after NHL relapse and my donor stem cell transplant in Dec 2017, the post-transplant measures keeping me alive are legion:
- Anti-rejection drug, anti-virals, anti-fungals, antibiotics and assorted other tablets
- varying dosage of steroids but down from 100mg
- diabetes mgt due to steroids
- loads of creams for skin gvhd which is also affecting my eyes at present
- Hickman line reinserted since venous access is shot
- fortnightly photopheresis in BCH
Steroidal effect on thinking, feeling, sleep and especially muscle depletion is not easy.
Q. For the frequent "How's Tim?" question, we've this week worked out a standard response:
A. "Tim will be managing post-transplant implications for the rest of his life, and we're getting on with it. He still needs to be proactive in avoiding infection."
Thank you to people who've supported us at different times in so many ways.
2 years ago, preparing for the 2017 Lisburn half marathon, I was enjoying the challenge & achievement of running 8+ miles.
I believe I will do a parkrun again in the future, DV.
What have I learnt? Lots, including:
"Remember the love bit"
~ Christopher Hitchens
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