I was told yesterday by my stem cell transplant consultant that should I get covid now, I’m not entitled to the antivirals and antibodies, because I am now just over a year post-transplant. I should have asked if having a DLI in the last few months, and steroids - both immunesuppressing - changed that, but I didn’t think quickly enough (I never see my consultants for more than a few minutes.) So I am now on my own, re covid, gulp. But I think I can accept that AND move forward with my life. Obviously, when I get it I’ll tell my team and no doubt they will monitor me from afar - so I still have a safety net.
However, he also said he speaks to 10 at-home blood cancer patients a day with covid, and he said they’re all experiencing a mild illness with omicron. He even said one person 14 days post-transplant was fine with covid recently.
I realise this isn’t the experience of covid of everyone here - just this consultant’s observations recently. He was encouraging me to now live my life, and to work in whatever environment I like (I had asked if it was now fine for me to return to work, as I’ve just completed all my childhood vaccinations; and whether I should seek a more covid-secure environment.) He said I should not worry too much about covid - I was just as likely to be ok as the next person. He did acknowledge that this is not every consultant’s view. He felt some consultants still (perhaps unconsciously) conveyed the ‘it will kill you, you must shield’ line, and that this was no longer correct or necessary for people like me (healthy post-transplant Acute Myeloid Leukaemia patients.)
Well, there’s nothing like a bit of confirmation bias, and as I was leaning towards re-starting my life anyway, I’m taking his words and running with them! I feel fit, energetic and ready to embrace all the wonders of life again, and I’m going for it. : )
On a similar note, I asked him when/if I could stop taking the prophylactic penicillon. I’ve had C.diff twice, and I’m sure it’s the antibiotics wiping out my good gut flora. And I’m conscious that scientists are beginning to understand how vital healthy gut flora are to our overall health - so long-term antibiotics worry me.
He said that there wasn’t a large body of researched evidence to say that the penicillin actually helps stem cell transplant patients much. It’s just that when the transplants began, medics felt it wise to throw in some antibiotics, and the convention has continued ever since. Intensive treatments used to mess up the spleen too, whereas less intensive treatments today don’t, so antibiotics are not needed for that scenario. In the US, they stop the antibiotics after 2 years, to no ill effect. So he said I could stop them now. Result!
I hope this proves interesting and/or useful to someone else. It’s certainly not what I’ve heard earlier in the pandemic, and has been the first medical voice to encourage me to now live the life I’ve had saved.
. Not what I wanted to hear. Now I’m trying to arrange to have my pentamidine nebuliser treatment here, so we can stay longer. Waiting for an appointment with a haematologist at the local hospital as we speak.