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Ann,
How unfortunate that your family received this dire news. I know how scary it is. Moving your home at the same time that you are fighting this type of disease is a tough transition too.
When a transplant is being considered, factors that come into play include age, other health conditions, and the availability of a donor. May I ask how old your husband is? If he gains weight and gets stronger, might the transplant choice be back on the table?
It sounds like the primary effect on your husband's day-to-day life is fatigue. That can certainly be frustrating for someone who is used to being active. I hope he can get used to going a little slower. Has he needed blood transfusions? Make sure that his doctors know that fatigue is a big issue for you. Sometimes doctors spend all their time trying to preserve life and only address issues like fatigue if you bring up the subject. Fatigue itself may not be life-threatening, but it's definitely a drag on the quality of your life.
Patients often press doctors about how long they'll live with MDS. The doctors can speak about the statistics, but when taking about one individual patient their predictions are often wrong. You can understand why patients ask and why many doctors would rather not make predictions. In any case, when they count your remaining time as a few years it means you have to weigh the quality of life with and without the various treatments they may suggest. We should all make the most of our time, and do what's important to us, but that's all the more relevant when you have a serious illness.
His doctors may have some ideas about eating problems and the best way to get nutrition, but a major treatment center will probably have on-staff nutritionists who are the best ones to consult with. I suggest asking about this. Maybe you just need a referral to that type of specialist.
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