Hi All. I am new to this site, I will give a brief outline of my sons MDS.
My son who is 33 was diagnosed with MDS at the end of March this year, he has been in hospital ever since. He has had various complications and 3 times we were told he was near death. However, he has survived so far. He had a BMT 4 weeks ago, his sister was a half match. I am still getting used to all the technical terms and I don’t fully understand my sons diagnosis, he is a single man, he has had amazing care in the hospital, but his care should he get out of hospital will mainly fall on my shoulders, my husband is having to keep his job going, he has had a fair bit of time off though.
I am in UK, all I can say is thank God for the NHS.
Are there any other people around my sons age or parents on this site that have had experience of a BMT, I would love to hear you’re story and how things are going for you.
I have had so many ups and downs, mainly downs. However at the moment there does seem to be some success with the transplant, although after 21 days we were told it hadn’t worked and they were preparing to do another transplant, then suddenly there were some signs of the transplant working and an increase of neutrifils. He is still very weak, but showing signs of improvement. He sleeps a lot, a couple of days ago he woke up and said ‘I feel better today’ and he was able to sit himself up, our hopes are raised yet again. He is such a wonderful son and has coped admirably, as he says he didn’t have any choice in coping with it. But he has recovered from so much, pneumonia, sepsis and a whole host of other complications. Sorry if I’m writing to much, such a lot has happened, it’s the first time I’ve written about it, would love to hear about other people’s experiences.
I feel for everybody who has to manage this dreadful disease, my heart goes out to you all,
Best Wishes to all, Vera
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