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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)
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@katgob

I am popping back in to say my 3- week checkup was great!! My red, white, neutrophils, platelets, creatinine and all was in the range. All were good!!!! I was to come off prevymis, but i just got a refill and they are pricey. I will finish those this month. Oh my. I got three more vaccines!!!! Hepatitis B, Meningococcal B vaccine (Meningococcal disease can cause meningitis infection of the lining of the brain and spinal cord) and infections of the blood., and IPV, (Jul 9, 2024 · Inactivated polio vaccine (IPV) The only polio vaccine that has been used in the United States since 2000. It is given by shot in the leg or arm, depending on the patient's age. Oral polio vaccine (OPV) No longer licensed or available in the United States.)

What a wonderful day!!! I do not know how all others do through the MDS recovery, but i am grateful my body has accepted my26 year old donor. I asked about taking vitamins and my NP suggests i wait till 1 year out. I talked with her about a number of other topics, and she was very helpful. The NP i had my first 100 days popped in. She heard my voice and came to see how i was doing.
My 100oz plus of water every day are working!!Lori has said she feels young again and i feel like i understand. I also used my weight loss from the hospital stay to start my time at my caregivers walking every day and following weight watchers. I believe in the truth, so my caregivers house was small and 3 of us were there, so walking for an hour was quiet time for me. It was a beautiful way to start what is now a life change. I hit a goal weight that is amazing to me.
I hope we hear from more in this thread about the ups/downs and moments of joy you have in this process. I am day 205 past transplant.

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Lori, Volunteer Mentor | @loribmt | Nov 2 8:36am

Hi Kat! I always enjoy seeing your updates, especially when you include the Day +. Crazy how fast the months have flown by since you and I started talking about the possiblity of a bone marrow transplant! Now you’re at day +206. Now ‘lookit you go’! 👀 Your recovery has been so remarkable!! (Oops, not in the medical term. We like being labeled unremarkable 😅)

Had to smile with your comment about weight loss and now maintaining your desired weight. My hand shot up! Me too! Me too! Before my diagnosis with AML, I had struggled to lose those multiplying, pesky menopause pounds. I was an exercise freak all my life and at 65 was still walking 10 miles a day and lifting weights but nothing worked. Then of course, with what I thought was MY concerted effort to lose, I lost 10 pounds with little effort. Silly me, had no idea the ticking time bomb of leukemia was lurking in the background!
Months of chemo and the subsequent BMT changed that profile, quite literally. I gained back enough pounds to make my doctors happy and now it seems easy to keep at this weight. So I’m a happy gurl too. Like you, I had a young male donor. My guy was 20 at the time so we’ve now aged 5+ years together. I quite literally feel like I’m in my 20s. And at 70, I still put on at least 8 miles daily and still lift weights, bike, run up the stairs…living life like they left the gate open. 😅

For newbies like @deb913 who has just started conditioning for her BMT and to @j0318 who is patiently (or impatiently 😉) waiting for a donor, the positive information we can give them along their journeys gives them peace and encouragement. It helps instill confidence in their decision to move forward and also offers hope.

Congrats on the next round of vaccinations. Slowly you’re turning into an adult again. ☺️ I love your moments of Joy!

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