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Preparing for Bone Marrow Transplant: My mind is racing
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Sep 8 11:10am | Replies (45)Comment receiving replies
Hi Lori,
Thank you for responding. I found out last year just one month after my wedding in the Bahamas (8/9/23) we were still on cloud nine. I had several blood tests that were looking ugly, but it was after I returned home, September 2023, they confirm me having (high risk) Myelodysplastic Syndrome. They immediately started me on chemo and blood transfusions for the last few months. I'm working with a Case Manager trying to put everything in place. I'll be having to stay in Jacksonville, FL 100 days after the hospital release. I am using a nonrelative donor.
Replies to "Hi Lori, Thank you for responding. I found out last year just one month after my..."
@avaleir
My husband is preparing to go through a Bone Marrow Transplant in Jacksonville as well. He has high risk B-ALL. We don't have an exact date yet but they are thinking around mid August. His son is his donor and has already donated his cells. We live just outside of Jacksonville but not close enough to be within their criteria for the first 100 days. Do you know where you will be staying yet? We don't have exact dates yet so we can't set any housing up yet. I wish you the best. We have a great team here in Jacksonville.
Good morning, Ava. I expect you’re getting a little anxious about next week, with your transplant pre-testing about to begin. It will be a busy week! When you look at the portal and see like 20 appointments with tests, informational sessions and such, you’ll wonder how it will ever be managed. But it’s like clockwork with Mayo and an experience like no other. You’ll breeze through all of it. ☺️
This isn’t the way you expected to begin your newly married life together, I’m sure. But it is just a bump in the road. There are many of us in Connect who have been down this BMT trail so don’t hesitate to ask any questions.
Is your lodging all set?
Connect
Hi Ava, oh my gosh, gurl! What a way to start out a new life together as a married couple. MDS is not the wedding gift you were hoping for…but it is a gift that keeps on giving, that’s for sure. Well, remember in your vows where you promised for better or for worse, sickness and in health…
You’re covering those two right from the get-go and after that it should be clear sailing. I hope you can bet back to the Bahamas for a 2nd honeymoon when this next adventure is over.
I had MDS’s ugly step sister, AML, which is something your high risk MDS could phase into so that’s why you’re having the stem cell transplant. It’s much better to do it now! I also know what it’s like to go into this knowing nothing, that’s why I’ve made it a mission to help anyone else having to go down this road.
We have very active discussions in the forum with those of us who have had transplants. This would be a good place to start where you’ll meet @alive @edb1123 @kt2013. @jenmkr63 @timt347 @jrwilli1 @tkidd51 @katgob and many others.
My bone marrow transplant story; Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
@mary612 started this discussion with her husband’s journey. He had his transplant almost 2 weeks ago.
Husband facing a stem cell transplant https://connect.mayoclinic.org/discussion/husband-facing-a-stem-cell-transplant/
I know what a hectic time this is for you with planning for a long stay, what to expect from the transplant and all those goodies. If you’re interested I can give you links to what to pack, useful items to take with you, post transplant guidelines, etc.. My transplant was in Mayo-Rochester so I don’t know much about lodging in Jacksonville. But I do know you’ll be in excellent hands with your Mayo bmt team.
Is there anything in particular I can help you with?