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Old Thu Jul 31, 2014, 04:30 PM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Dean,

I will attempt to speak to the GI issues and maintaining weight, as I lost about 30 pounds from transplant to day 60, and have only gained back about 8 pounds now at about day 160. The GI symptoms are individual, but many people experience some sort of digestive distress, and spend a lot of time with trial and error in the different foods and how they impact your system. For me, it changes day to day and week to week. My taste buds are still experiencing some difficulty, but this does not keep me from getting 2000-3000 calories per day.

I have found that too much milk or soy product can cause problems on any given day, but tend to push through because to reach my target of 100 grams of protein per day, I need to supplement with some form of protein based drink that gives me 30 grams in a single serving.

Unfortunately, the trial and error method as to how much of what I can consume without pushing myself into discomfort has really been via trial and error, noting what I had to eat, then repeating in altered doses, meaning that I might add more juice to my protein drink to offset the milk or soy milk, and this seems like a pretty good solution -- peach or pear juice or even mango based have been kind to me - i would avoid apple, orange, and grapefruit (as it interferes with lots of medications).

As for the central line, I was told to avoid bathtubs, swimming pools, and jacuzzis until the line is removed because of the risk of infection. I am 100% with Neil on this - see what the doctor says, and seek out other forms of exercise as needed.

Congratulations on the transplant and here's to a healthy future!
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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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