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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 2 days ago | Replies (549)Comment receiving replies
Today is day +38. He is slowly regaining his energy and appetite. His bone marrow biopsy shows 100% donor cells. His blood counts are steadily increasing. He still has to get magnesium and fluids a few times a week. He has no signs of HVGD. The only persistent issue he has is hand tremors. This makes it difficult to eat and he is frustrated not being able to do simple things for himself because his hands shake so badly.
Replies to "Today is day +38. He is slowly regaining his energy and appetite. His bone marrow biopsy..."
Today is Day +49. We are almost half-way home. All of his tests look great except for kidney function today. His hand tremors seem worse and makes eating difficult.
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Good morning, @caregiverx2. Thanks for checking in with the progress report on your husband’s bone marrow transplant. Those first couple weeks can sure test a person’s mettle, can’t they? Both that of the patient and the caregiver. ☺️ I’m happy to read he’s doing well with his recovery.
It’s pretty normal to be receiving mag and fluids for a while. Eventually there will be a switch over to oral Magnesium. I remember those sessions…either 2.5 hours daily or 5 hours every other day! Did a lot of binging on Netflix those days.
The tremors are most likely from the Tacrolimus. Initially and with higher doses that can happen. Even on lower doses I still had a slight tremor but they went away with no residual after I was completely off. Trying to draw a straight line with my artwork was actually a little amusing! Gave it character!
But I do remember securing small buttons and eating soup were a challenge! Most patients see improvement as the dosage gets reduced. That will come in time! Right now keeping the new immune system calmed (suppressed) while body and cells are learning to play well together is crucial. Like introducing two new cats to each other! 😅 That doesn’t happen over night. At some point there will be a gradual taper off Tacro, usually near the end of the 100 days. However, some patients remain on it longer. In my case, I was actually on low dose Tacro for 2.5 years. We joked that “The force was strong with this one”, referring to my new stem cells. I had a perfect match but it took a while for graft (cells) and host (my body) to come to an amicable agreement! LOL. They’re BFF’s now and everything’s perfect but they did butt heads for a while.
We each have a unique journey through the transplant odyssey. Tell your husband to hang in there…things get better! Getting a second chance at life doesn’t come without an effort. But the rewards for persevering are immense!
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