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I had MDS RAEB2. A year ago at age 73 I had a SCT. Last BMB showed 100% donor cells. Age 69 in reasonable health should be good for a transplant. 85 in poor health maybe not.
On my way to recovery I had GVHD that destroyed the gut lining, c.diff and CMV. I was in hospital for 2 months. For the first 6 weeks I was on IV fluids and did not eat or drink anything. I was never hungry or thirsty, no real discomfort. My weight did go from 170 to 130 and had definite malnutrition. Hair fell out but is now as thick as ever, muscle wasted away. I now can hike 5 miles on a good day. People live for months without eating. I was offered food but it was not forced on me.
I was put on IV feed and went home that way and stayed on IV feed for a month and a half. They tried the nose feed. I hated that tube and said I would drink the stuff but take that tube out. It was not a fun experience but I had no real pain except for the middle of the night "vitals".
I was taken off the transplant drugs and promptly broke out in moderate GVHD of the skin. They put me back on 8 drugs that includes 80mg. prednisone. I am making slow progress.
Sometimes I wonder who suffers more, the patient or the care giver.
I wish you all well.
Ray
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