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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: 1 hour ago | Replies (918)Comment receiving replies
@loribmt thank you for the information , much appreciated . I am 65 yo and I got diagnosed with CMML myelodysplastic-type
CMML (MD-CMML)
A couple of months ago . I live in eugene Oregon and in 2 1/2 years no one here or even in portland could diagnose me . I had skin sores ( bumps ) I bled easily and bruised easily . My dermatologist basically saved my life by encouraging me to go to the Mayo Clinic ( he knew a colleague there and got me an appt ) . He said he could not diagnose me .
I went to Mayo for a week and after two weeks they called me to get a bone marrow biopsy because my cells looked odd shaped + within a couple of days I was diagnosed. A few weeks after that I had my follow up over phone with Mayo hematologist and they told me because of my type of mutations it raised it to urgent and I needed to have a bone marrow transplant . Quite shocking at the time because my drs here were saying it could be easily managed for years . I am going to have the transplant at Mayo the dr is shooting for beginning of Sept but they’re still in the process of finding a donor . My son can be back up , which is a relief .
My husband is still working so I’ll have a bunch of family -+ friends coming in to be caregivers too .
I just want to find a hotel backup in case I have to move out of the care house .
Thank you for the information
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@loribeyerlein
Hi Lori, It’s always a comfort to have a backup plan! There’s no shortage of hotels and lodging in Rochester if you need to move from the care house. Of course, the closer they are to the clinic they go up in price. But there’s convenience in that many of the hotels within a couple blocks of Mayo are connected to the subway system so no worries about parking. It’s easy to walk to the clinic.
The early days for me I needed a wheel chair because of fatigue. Even walking 2 blocks was like climbing a mountain. LOL. Mayo allows patients to use their wheel chairs to take back and forth to the hotel! Made the daily trips really easy for my husband to just chauffeur me over to the clinic and back. ☺️
It’s incredible how your story unfolded! Kudos to your dermatologist for referring you to Mayo! Otherwise…wow, this could have been another story! I’m so relieved for you because I know you’ll be well taken care of there.
Fingers crossed for a quick donor search! My daughter was also my backup in case an unrelated donor couldn’t be found. Either way, you’ll be covered. Sounds like you have a great support system too! Keep me updated on your progress, ok?