I am new to this site. I am not posting about myself but about my 32 year old brother. 9 years ago he had a stem cell transplant to treat leukaemia (I was his donor), which has been in remission ever since. We have been lucky enough to have 9 good years during which time he has worked full time, had an active social life and moved to London with his girlfriend. There have been many side effects of the treatment, but the most serious has been GvHD which over time, reduced his lung function to around 30% through fibrosis.
Drugs have probably slowed the decline, but don't seem to have been able to halt it completely and around Easter time, the docs started to talk about lung transplant. Amazingly, he has fought off infections in the past, and like I say, until very recently led a relatively normal life. He was never going to be able to play sport or do heavy lifting, but it didn't hold him back too much. Sadly, in early May he got an infection which he couldn't fight and was admitted to hospital. After a few days in critical care, he was back on the haematology ward and was making a small improvement, when he was hit with a secondary infection, and on top of already scarred and inflamed lungs, this completely floored him. He has now been in hospital 2 months, half of which in critical care and it is just awful. Twice we have been told he isn't going to make it, but over the last 2 weeks, he's worked hard with his physio, nutrition and oxygen weaning, and late last night, came out of critical care, back to haematology. We have no idea what the future holds. He is incredibly vulnerable and is still so dependent on oxygen. He finds sitting in a chair exhausting and has been standing with a frame for a few minutes at a time. That is all he can do and his old life seems such a long way away. Obviously the whole family and his girlfriend and friends are devastated by what's happened to him. You go from hope to despair, anger to sadness, guilt to resentment in the blink of an eye. He's fighting so hard but for what, so he can be considered for a transplant which has a slim chance of success. They have said he would only be able to have one lung as the chest cavity isn't big enough for two (his left lung is essentially useless), and the likelihood is a transplanted lung would get GvHD in time.
But one good lung is better than what he's got now... He's so young and has so much love and support, he wants to live but I don't know how he can psychologically deal with it all. It's horrible to see him suffer. We're all adjusting to the fact that this is long term, and no-one knows how far he can recover, or what his life might be like. I have been reading other posts on this site and it's comforting to know he's not alone in what he's going through, that there is support available, and that there is hope, however small. I admire you all just as I admire my brother. We are so proud of him, but dreadfully sad as things still look so bleak. Coming out of critical care is a massive step but he's got such a long way to go and we feel powerless to help him. We are trying to cope and get on with our own lives as best we can, but there doesn't seem to be any level of normality at the moment. Work is a bit of a distraction and I'm grateful for that. I find it hard to enjoy anything and then feel I should enjoy the little things, and then feel guilty because he's stuck in there. My mum and dad are up with him in the week and I go at weekends. His girlfriend is amazing and goes every day, it's all consuming.
Thank you for listening and I would be very grateful to hear from anyone with experience of this condition, or their families.
All best wishes