My husband is waiting for his second transplant
My husband was diagnosed with Non-Hodgkins Lymphoma May 2020. After various failed treatments and immediate relapses, he eventually got into remission November 2021 and an unrelated 9/10 donor match was found for an allogenic transplant with the cells harvested from peripheral blood. He had his transplant end of January.
Fast forward to today. He is at day +74, still in hospital. At day +5, he ended up in ICU with atrial fibriliation, subsequent heart failure and a cardiac ejection fraction of 25%. Doctors assumed myocarditis had caused this - maybe due to the conditioning chemo (BEAM) or maybe a virus. Miraculously, his heart suddenly went back to normal rhythm on day 10, but his graft, which went started working for a few days, suddenly stopped and now he has secondary graft failure, but they don't know the cause.
Just for background, his bone marrow has always struggled to recover after chemo - this time last year after his first round of R-ChOP, they didn't come back until a bone marrow biopsy showed some T-cell autoimmune response was causing inflammation - a dose of steroids later and they came back almost immediately. So his bone marrow has always been very fragile, likely due to all the chemo he has had.
His team have said he is able to have a second transplant - he will have Fludarabine and ATG and TBI as conditioning starting next week, with cells from the same donor. They said it can work, and his heart is a bit stronger now (45%), but there is a possibility it won't. The advice I need here is two-fold. Has this happened to anyone else? Can it really work? And then mentally, this is very very hard for me, I am struggling, but for him, it is horrendous. He is very poorly, very weak, having transfusions daily and can't eat (however much we encourage him) so he has to have a feeding tube. i feel like he has given up. All the hope he had has just gone and it feels like he's preparing to just fade away. Since then he's been back in ICU and on high levels of oxygen. He is in his own room so very isolating and me and the kids are trying to visit as much as possible, but I am self-employed so it's hard. I'm not really sure what I'm asking but I guess has anyone else experienced anything like this? and also is there anyone I can speak to as I feel I am going a bit crazy trying to predict the future, keep my husband going and also my kids. thanks.