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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: 6 days ago | Replies (711)
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@katgob

Bonnie, I am here too to answer any questions, odd or not that come up. Lori is all over the lists of what is needed and how those first 25 days will unfold. Once you review her links more will make sense. I heard from her how preconditioning goes and Day 0 and so much more. I was in California, but it felt like Lori and others who chimed in were sitting right with me. As the transplant team review with me, i was comforted knowing Lori gave me those tips before. So many hospitals follow the nearly same successful routine of the first 100 days.
Caregiving is so expensive, I finally got a very good friend to let me stay at her house for about 74 days to complete my 100-day request. To me it was the hardest part.
Your dear Mom. I do hope she is in a community. That she has someone to check on her. You will be able to call her. The questions you have will be answered.

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Replies to "Bonnie, I am here too to answer any questions, odd or not that come up. Lori..."
bonnieshaffer | @bonnieshaffer | Jun 10 10:31am

Thank you so much!

My team up in Portland at OHSU is great and have informed me pretty well. I attended an 1 1/2 hour Zoom seminar on the process and what is expected of caregivers. I'm staying at an Air BNB near the hospital which works with the OHSU and is very forgiving about refunds, delays in moving in, etc.

I have Myelofibrosis 3, which is worrying to my doctors. My bone marrow is filled with material that will slow the engraftment of the donor's stem cells. This means my blood counts could be slower to come up and I'd need to stay in the hospital longer.

A wonderful friend of mine has organized a calendar with all the important dates for the Transplant and specific dates coming and going for 8 different caregivers. They are flying in from all over the country. I'm so lucky to have such great friends.

I still have a lot to do to get my home organized for my house sitters and I have a quick trip to Portland June 23 and 24 for two days of pre transplant testing.

I'm getting really exhausted - I've scheduled painters, sprinkler system repair, plumbers to get the house ready and it's been 100 degrees for the last 3 days.

I just have to get as much done each day as I can.

Thanks again!

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