hi mark,
i'm late again, as usual!
shane was just 10 when he was dx and had his BMT. he's now 12 and on november 22nd, will be two years post transplant. yes, i do understand that kids have a far easier time than adults. i remember once having a wee moan about him having to face christmas on the ward, at that time he was just 25 days post transplant. then the doctor told me i should visit an adult ward and meet patients who had a BMT. honestly, i can't imagine how difficult both physically and mentally it must be.
although shane spent just 3 months in hospital (well, the initial stint) from dx through transplant and discharge, he received numerous blood and platelet transfusions. on admission, it was twice weekly - then building up to 3 and 4 times a week. prior to and through conditioning, he received platelets twice daily - once at 8am and again at midnight. not only was his body eating them up, but it was mostly precautionary incase of bleeding through ATG and conditioning. i wasn't aware of any other term other than the docs saying he had become "sensitised" to blood and platelets. i guess that meant his body had enough of them.
i read earlier on the AA forum that you are now going ahead with transplant, only you are trying to figure out which one is best - either cord blood or stem cells. i can't help you there because i have no clue. i hope you are able to get enough informed opinions to help you make the right choice for you. i can hardly believe you have coped so long and faced endless treatment and yet still - you're working. you must be made of some very strong stuff!
what you're saying about getting used to the illness makes sense. my cousin was in nursing for many years, climbing through the ranks. she worked mostly with kidney transplants. she said that patients came to accept feeling tired and weak, because they didn't know any different. i guess that's what you're experiencing. she said it was only when they were in recovery, did they realise how good it was to actually feel well! and, i moan about feeling tired - shame on me.
for what it's worth - i think you're doing tremendously well mark and i have a lot of admiration for you. going through all these transfusions and actually knowing when your counts are dropping. well you must do. i know i could see it in shane and he was only really ill for a short time. it must be second nature to you. i hope you continue to keep the strength - it's needed in bucketfulls
i'm originally from leicestershire in england. i moved to dubai (united arab emirates) in 1986 and my twin boys were born there in 1994. i left dubai and joined family in scotland in 2002. i'm a single mum with 3 boys - shane and ryan now 12 and adam just 4. life has been tough on us, but with the support i've had from family and friends, and so far (crosses fingers) shane's successful BMT - we are living life to the full!
gina xxx