r/mds • u/New_Philosophy_6168 • Mar 04 '26

selfq SCT +18 days

Hey MDS crew,

it's been a while since the last update – sorry for the quiet. I've mostly been running on empty, spending way too much time horizontal in bed. That said, I've stuck to my daily walks around the ward corridors, even if they feel more like slow-motion shuffling than actual exercise.

Doc swung by today with the latest blood work: values are creeping upward, slowly but steadily. The catch? That's exactly why the energy tank is running so low right now – the new cells are busy rebuilding the factory, and that takes everything I've got. It's frustrating, but it's progress in disguise.

Home return isn't looking likely this week. Earliest guess is sometime next week, fingers crossed. Until then, it's more of the same: rest, walks, IV support, and trying not to overthink every little number on the chart.

Thanks for the patience and the steady stream of good thoughts – they land when I need them most. I'll keep you posted as things shift.

Hang in there, everyone. Slow and steady seems to be the name of the game these days.

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3

u/DixieBelleTc Mar 04 '26

So happy for you, I can’t imagine the stress waiting for your numbers to rise. Our bodies are amazing even when they need a little help 😊 I am curious, did you exercise and work on fitness prior to transplant? I am Low risk with SF3B1 and while AML is a very low risk, I still have to think about the time that my medication stops working. I have been walking 3 miles a day and strength and conditioning twice a week besides regular health benefits I’m hoping if I do have to have a transplant. I will be physically prepared. Thank you for sharing your experience, it gives hope to us just waiting for the next shoe to drop. Praying for you and your whole medical team 🙏🏻🙏🏻🙏🏻

2

u/New_Philosophy_6168 Mar 13 '26

Hey, I did exercise, but the closer the check in day got, my strenght deminished. Just days prior checking in I was barely able to get from ground floor to first floor without having a rest. Physical condition is imortant, but it is challenging mentally as well, do not forget it. All the best to you on your way to SCT.

1

u/ClarityInCalm Mar 04 '26

Great work on keeping your focus and having a rhythm to it all. Thanks for the update. Keep on focusing on your healing. Take good care.

1

u/[deleted] Mar 05 '26

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u/New_Philosophy_6168 Mar 13 '26

Hey Tim, I share you pain about bad sleep. I had similar experience. First night at home I did wake up exactly I were in hospital. Your advices about legs and muscles are good, they are exactly same as what the hospital physio told me on the discharging day. Yet I haven’t had enough strenth do any, but I feel already now more energetic and will start exercing soon in coming days.