Thread: BMT advice
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Old Mon Nov 16, 2015, 03:04 AM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Perspective is important. I started off with the belief that BMT was a 3 year process, and I am glad that I held that belief, because it has been a challenge. I am rapidly approaching 2 years post-transplant (february 26th). the second year has been somewhat more difficult - i have been hospitalized a total of about 65 days this year versus none in year one. Most of the days were for observation, only a few required treatment, but the team of doctors is always cautious with transplant patients and infections that we get. I have had 3 bouts of cellulitis this year due to low white blood counts and diabetes related swelling of my feet. I have had a couple of bouts with klebsiella and a couple of random fevers. Eating has been a challenge in the sense that I love food and my taste has been off for the better part of the last two years - everything is either too salty or ridiculously bland - The only flavors that are consistent are chocolate and peanut butter - both things that prior to transplant i did not enjoy but like to consume now. I used to be able to eat just meat all the time - now I am a carb hound.....it is all about change and adapting to what I like now versus what I used to like. Eating to me is an essential part of recovery, so finding what you like is the key to recovery - it takes an open mind, can be depressing, but I prefer to see it as a culinary challenge - try to help your father in law go on an adventure - it may be horrible at times, and it may just lead to a good laugh - my children find it very amusing that I suddenly have a sweet tooth - it is also ironic given that I have drug-induced diabetes and have to monitor it on the other side - i prefer to laugh at calamity because i have a slightly dark sense of humor - some call this brave or strong = i just think it is funny. It all comes back to the childhood rhyme - if at first you don't succeed - try try again. There is so much good food available to us - there is something that he will like and the nutritional value is not always as important as the caloric intake or the high that you get from an enjoyable meal. That is my learning and advice.
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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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