Transplant +1,528: Am I Normal Yet?

It’s been an eventful few weeks. I had my 6th dose of Covid vaccine and annual flu jab in mid-October – which wiped me out for a few days. I saw my consultant a few days afterwards. My white blood cell count was far too high (around 28!) so I was taken off the G-CSF injections as an experiment.

I spoke to another consultant a couple of days ago and my counts are holding up without G-CSF. Lymphocytes are above 1.0 for the first time in more than four years and I have a neutrophil count of 1.7. Both are slightly low, but they’re a far cry away from their levels during my MDS scare at the start of this year.

This means I’ve been asked to stop taking aciclovir and co-trimoxazole for the first time since March 1st 2018. I have another checkup due in a couple of months, but in the meantime I need to be on the guard for neutropenic sepsis, just in case this improvement isn’t sustained.

I’ve even had a weakly positive response to the Covid vaccine this time around (thank you Moderna!) – but so weak that I’m going to take another antibody test in a few days to see if the response has improved in the last couple of weeks or disappeared, like it did after my second dose. But as I stopped Rituximab maintenance last July, I’m hopeful that even if there are no signs of antibodies after my second test I should have some protection, however feeble.

The worst part of all of this health uncertainty is the mental strain. I’m now so used to being ultra careful that I can’t seem to break the habit.

An example – we went out for lunch yesterday to meet friends – outside, in a pub garden. We’ve done this a couple of times in the last few months and it’s felt ok. Unfortunately they were getting ready for the World Cup so the garden was closed. I did venture inside briefly, but it felt so claustrophobic that I panicked and had to leave.

Maybe next time. Not normal, not just yet.