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Anyone dealing MDS and how are you doing?

Posted by links @links, Apr 20, 2024

Hello
Anyone dealing with MDS and how long and how are you doing?

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donnamae90 | @donnamae90 | Dec 19, 2024
In reply to @janetlen "@donnamae90 Fatigue is a problem with MDS. I too live alone. I have accepted that I..." + (show)
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@donnamae90 Fatigue is a problem with MDS. I too live alone. I have accepted that I do not have the stamina or strength that I once had, but I still have a good quality of life. We make changes. This year, I gave up motorcycling after 22 years of riding. I felt that I should not ride when I was tired. Fatigue is still present but not as bad since I am now stabilized on Revlimid. Have you started treatment? Where is your Hemoglobin at?

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Thanks for your note. Motorcycling - wow. I' m considering giving up driving! My hemoglobin was 88 but now back to 92. No revlimid offered.
Have sleep problems, but don't think that's related to MDS.

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katgob | @katgob | Dec 19, 2024
In reply to @donnamae90 "Experiencing fatigue that makes living alone a bit of a challenge" + (show)
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Experiencing fatigue that makes living alone a bit of a challenge

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Donnamae,

I am doing very well. I was in a research study to prevent GVHD symptoms and so far, 253 or so days past transplant i have not had any. Yet, being part of connect here, I am reminded that recovery is a day at time. Something may happen to trigger something. So for today, I wear masks and do not hang out in big groups. My blood test numbers are still excellent expect for my white cells that dipped below the minimum needed. My Dr. was not worried so i see him again on January 10th.
Abone marrow transplant patient is a patient for life. at 6 months, my donor was 100% of me. Next BMB is in late March.

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Colleen Young, Connect Director | @colleenyoung | Dec 28, 2024
In reply to @scottcanser "My Wife has had the transplant done and is doing well all things considered. She's about..." + (show)
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My Wife has had the transplant done and is doing well all things considered. She's about 3 weeks post transplant. She is having problems finding foods that don't upset her digestive track.

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Hi @scottcanser, it's been a few more weeks since you posted. How is your wife doing? How are YOU doing?

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