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MDS Myelodysplastic syndromes

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Old Fri Jun 28, 2013, 11:35 AM
katgio50 katgio50 is offline
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Exercise and low rbc count

My husband has always been a fitness freak and has continued to work out through his year and half bout with MDS. He has been taking a Procrit shot every two weeks and done fairly well with maintaining his numbers. However, his number have recently tanked and he received his first transfusion yesterday. His Dr. had said no exercise except walking. Even though he has no energy, he would still like to lift light weights etc. Thoughts??
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Old Fri Jun 28, 2013, 11:55 AM
BrianFlaigmore BrianFlaigmore is offline
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Weight lifting requires a lot of HGB to power those oxygen hungry muscles. From my experience, when my counts were low, and I needed a transfusion, walking up stairs was difficult. I realize everyone takes having low counts differently, but I remember blackouts to be common. Even with light weight, that could be a problem.

Walk, walk, walk and take breaks when necessary. Even as a long distance running 26 year old, it was difficult to do much more than that when my HGB got below 8. But staying active is huge.

Those are my thoughts.

Brian
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26m Mystery liver failure 6/11 treated with prednisone. Falling counts, Rituxan attempted for Evans syndrome 11/11. Tx dependent and SAA dx 12/11. hATG 2/12, no response. MUD BMT 5/6/12. Living life!
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Old Fri Jun 28, 2013, 12:12 PM
triumphe64 triumphe64 is offline
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I agree with Brian. Five pound weights might be OK for muscle tone.
Listen to your body. Things will get better and then you can do more.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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Old Fri Jun 28, 2013, 07:12 PM
katgio50 katgio50 is offline
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Thank you for the replies. I was hoping that he would have a lot more energy after the transfusion, but not much change. Don't know what the next step will be.
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Old Fri Jun 28, 2013, 08:16 PM
BrianFlaigmore BrianFlaigmore is offline
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Could I ask how old he is, what his diagnosis is, and what are the dr.'s suggesting?
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26m Mystery liver failure 6/11 treated with prednisone. Falling counts, Rituxan attempted for Evans syndrome 11/11. Tx dependent and SAA dx 12/11. hATG 2/12, no response. MUD BMT 5/6/12. Living life!
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Old Fri Jun 28, 2013, 08:20 PM
billyb billyb is offline
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I would start off slow and listen to your body and I would look into the use of Procrit, allthough it has its pourpose it can be a very dangerous drug in the long term
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Old Thu Jul 4, 2013, 06:39 AM
squirrellypoo squirrellypoo is offline
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Quote:
Originally Posted by BrianFlaigmore View Post
Walk, walk, walk and take breaks when necessary. Even as a long distance running 26 year old, it was difficult to do much more than that when my HGB got below 8. But staying active is huge.
Seconding this. I went from running 30km a week to barely being able to walk up a flight of stairs in two weeks, due to my counts plummeting. It's frustrating when you see everyone else exercising, but he needs to focus on utilising the little blood he's got in the most frugal way possible now.
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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Old Fri Jul 5, 2013, 10:48 AM
katgio50 katgio50 is offline
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He is back in the gym slowly walking on the treadmill and lifting light weights. It makes him feel better and maintain some semblance to his normal life.
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