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Old Sun Mar 16, 2014, 08:23 PM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Bailie,

i have been out of bed and walked at least one mile every day since i was admitted to the hospital, typically walking 1.5 to 2 miles, so strength is good, but I am fatigued, meaning that I get through the daily tasks - eat, shower, exercise, see visitors, talk to family and friends on the phone, etc. but I am more tired than usual after completing it all. It is a matter of how I prioritize. The more I prioritize me - walking, eating, sleeping well, the better i feel.

I highly recommend earplugs for sleeping as a side note.

My mouth is doing just fine in terms of sores, but my taste buds are pretty well messed up and eating is more of a chore than a delight. The goal is just to get calories in. I have not had a terrible time with nausea, though until the last few days, i have taken almost any anti-nausea that they gave me, i have been completely weaned for 2 days to no ill-effect. Digestive tract - there are some issues, but they are resolving. I had a poorly placed fissure after the first week that caused considerable discomfort, it is getting better. I am not experiencing any substantial problems with extremely loose movements as i hear is common - been fortunate.

Ask lots of questions be prepared for curves in the road, get up and move, even when you don't want to. If you are having trouble, there are physical therapy folks that come by every day if needed to get you out of bed and going, so if you don't have the will or the strength, don't be ashamed to use the resources to pull you through.

dfantle, it is quite a mystery as to how and why people engraft the way they do. I am slow and steady on the whites, but had a nice ANC jump last night from 323 to 580, and my platelets went up again to 22k from 16k. I was very excited at 3 in the morning when the numbers came back. At the end, I dont think we care about the order of engraftment, just that it happens.
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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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