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Paul,
Good luck with the pending transplant! My hospital stay was close to 30 days, full ablative conditioning followed by allogeneic transplant from an unrelated donor 10/10 match. I developed minor gvhd within the first couple of weeks that affected my arms and head only - so basically skin gvhd. I had a pretty good first six months and then had more challenges with GVHD spreading and slight relapse that we have been treating with Vidaza. I received my transplant in February 2014, so I am now about 1 1/2 years post transplant. We are still working through the GVHD - skin, gut, eyes, but all pretty mild on the scale of things, meaning we have been able to treat the GVHD as it flares up and then scale back pretty quickly.
A positive attitude, getting up and out of bed and moving every day, eating whatever you can eat, staying entertained, keeping focus on healing are all keys to getting through. Don't let morning frustration keep you from having a great finish to the day. Some days it took until four o'clock to get into the shower and take my mile or two long walks in the hospital, but they always got done. persistence is important. Oh yeah, and take any and all pain killers as offered and needed even if it is not normal for you to do so. There is no glory in enduring any pain that you might encounter. Most of this occurs when you hit the trough and have no white blood cells left and then goes away once you start to engraft (about 7 to 10 days after the trough).
Remember that you will get through it!
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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