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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
Hi Lori! All is going well for me. Life truly is an an adventure and never boring! I’ve been very fortunate for my care at the Mayo Clinic and my recovery from MDS. I’ve done very well and was discharged from the hospital almost one week early. I have had some graft vs host issues with liver function so they put me on prednisone and changed my doses on other meds. They went down significantly, however, the last labs were up a little. I hope it was just a blip. My marrow and CD33 are 100% donor and my CD3 is 80%. The doctors are ok with this and say the CD3 should increase in time.
I’m not far from Mayo Jacksonville so the weather has been good to me. Allowing outside activities and meeting friends outside during the pandemic. I can’t imagine having to be closed inside for the winter. It has been helpful that others are also being careful due to the pandemic and I’m not the only one out there wearing a mask.
My hair is coming back and is about 1/2 inch long and it can’t grow fast enough! I’m not sure how long I’ll stand the wigs. The weight loss has brought me to the weight I should be and I hope to stay there. So right now I’m walking and doing some strength exercises to help this along and get toned.
I haven’t felt depressed and look at my cup as 1/2 full and getting fuller all the time. I’ve had lots more energy. I was used to running on a hemoglobin of 7 and with it doubled now, it’s great!
Overall, my transplant was very easy and I’m so grateful. I had a few intermittent very sleepy days in the hospital and a few after I got home. My wonky lab results were asymptomatic so I didn’t feel any different. Once I’m off the tacrolimus, I should be able to get the Covid vaccine and I start my childhood vaccinations next week.
I hope others are doing well through their BMT/SCT. Thank you Lori for keeping the communication lines open.
Gretchen
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@waveg Hi Gretchen! That’s great news! I’m so happy to hear the transplant was easy, your energy is back and life is returning to normal! Well, as normal as it can get with the pandemic hanging around. Yours is such a positive, encouraging story to share for others to see. I hope we can keep getting more of our SCT/BMT members joining.
Seems like the liver is a frequent target for gvhd and the meds are always being tweaked like little dials to get the balance just right. I’m still on a very low dose of tacro for the same reason. A little GvHD ‘gnawing around the edges’ as my husband likes to say. My doctor wants to hold on a little longer just to make sure it’s stabilized now before taking me fully off. My numbers have been getting better on the liver side of things but because of the tacrolimus, my kidney numbers are going in the other direction. LOL. Like I said, it’s tweaking here and there to keep both organs happy. What is your daily dose of tacrolimus right now? Have you been tapering off?
Hair at 1/2 inch? It’s time to liberate your head and show off that newly acquired crown! ( but wear a hat in the sun!) It really does feel like it takes forever to get started, doesn’t it? But then all of a sudden it takes off! Wonder if your texture or color will change. I had Christopher Walken hair for the longest time. It was hilarious but it was hair and it was growing! LOL. I had 2 wigs and honestly, I seldom wore them. I felt a little bad-ass with my new look! Fierce warrior. Now it’s just a shaggy mane needing a professional cut! Fortunately I’m not seen by many people so at this point it’s no head of shame.
Life is not boring for sure. With a SCT it’s best to keep a sense of humor and a sense of adventure.
I’m so happy you wrote, Gretchen. Will you keep tuned in to the site? It’s great to have fellow SCT/BMT members on board so we can get some good conversations going in the future with a larger group. I’m being optimistic. ☺️
All the best...Lori.