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Hello,
Thanks for all the feedback. I don’t feel like the lone ranger anymore.

Vicki, Thanks. The heart pounding is something I have experienced but forgot to mention. Appreciate you input. Good luck with the BMT.

Mags, Really appreciate you expert (RN) opinion. I understand what you are saying and have read the same thing in other articles. I do see my PCP every 6 months’ and he has looked into the fatigue but says it is a results of the MDS. He has ran numerous tests and all of them have come back normal except the ones that point to MDS. As far as conditioning goes I really can’t see myself exercising. I am not being sarcastic but it seems like trying get in shape is like trying to save for your kid’s college when you are on minimum wage. Maybe it is just a vicious circle. I do appreciate your thoughts!!

Dan, What you said was interesting. I was in the hospital for 11 days recently for an infection. Normally one would expect your WBCs to go up during an infection but mine were low. In fact the first 4 days I was in the hospital my WBC counts were 1.6, 1.2, 1.5, and 1.6. On the last day they were 2.3. During my hospital stay and since is when this fatigue really got bad. I am supposed to have my labs done on Thursday and am anxious to see how they are. Thanks for the input.

Mitch, Your levels seem to be close to mine. My latest hemoglobin 9.7 and that was after 20,000 IU of Procrit. If it goes above 9, they won’t let me use the Procrit (I have it at home but they tell me not to use it). When I was released from the hospital recently it was 8.3. It has come up a little but I don’t see much change in my fatigue. I would love to have a Hb in the 13 – 14 range!! Maybe they will try Vidaza on me. Thanks for taking the time to share your experience!!

Bailie, I agree that weakness and shortness of breath correlate with Hb. I just wish I could get mine back up to 13 or more but they hold the Procrit when it gets above 10. Your counts look good now. Good luck and thanks.


Thanks again to everyone for commenting and good luck in your respective journeys.
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