My son is 10 months post sct and is having serious complications of the cgvhd of the lungs. His lung function is very poor and we are struggling to get it under control. Is waiting to start ecp at guys. Would love to hear from anyone who has had similar experiences. Very scared right now.
Sorry to hear about the challenges your son is having.
I had two Allo Stem Cell Transplants (SCT) and although I had no problems following my first Allo SCT the graft failed within 6 months.
I did have lots of problems following my second Allo including skin GvHD and also 10 month post Allo I had GvHD in my Bone Marrow so had to have blood transfusions every week for thee months…… this also had an effect on my lung function as I also have asbestosis.
We talked about ECP but I could not get the treatment anywhere near to me so we persevered and it all came ok.
Let’s look for the ECP to do the job.
