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Living with MDS (Myelodyplastic Syndromes)
Blood Cancers & Disorders | Last Active: Aug 30 4:21pm | Replies (229)Comment receiving replies
Can you share your experience with the bmt? Im waiting for one myself . No one likes to discuss it much. How long ago was it and are you rid of all that was wrong prior.
Replies to "Can you share your experience with the bmt? Im waiting for one myself . No one..."
Hi @lmkmom, I want to make sure you’ve seen the answers to this post intended for @katgob. She wrote back in this reply: https://connect.mayoclinic.org/comment/1369125/
And I wrote a reply as well. Here is that link https://connect.mayoclinic.org/comment/1368897/
I know you have a lot of questions…we have a lot of answers. ☺️
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Hi @lmkmom, most of us whom have had a BMT are very willing to talk about the process. While you’re waiting for @katgob to reply, I’ll jump in with she’s the poster ‘child’ for how this should all go! ☺️
I found her first post from 2/14/24 where she and I first discussed the possibility of her having a BMT for MDS. Her story follows from this conversation on.
https://connect.mayoclinic.org/comment/1015856/
But then we switch over to this discussion where Kat joins in the conversation with @deb913 @mary612 @tkidd51 @alive @edb1123 @kt2013 @dwolden, @jrwilli1 and so many others, either patients or caregivers, who share our collective experiences with the BMT/SCT process.
~My BMT story. Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I hope you find this helpful. I’ve given you quite a bit of information in this discussion you posted a few weeks ago: https://connect.mayoclinic.org/discussion/what-happens-to-all-of-the-vaccinations-you-had-as-child-ater-a-bmt/
Your doctor has recommended a bone marrow transplant because of your diagnosis with MF. Basically, your bone marrow is defective and no longer able to produce healthy blood cells. Blood cells start out as stem cells and then go on to develop into red or white blood cells or platelets. A bone marrow transplant is done by receiving healthy stem cells from a donor. The donor is chosen by the transplant team and then their cells will be collected and ‘flown’ to you.
Before that can happen the old marrow and any cancer cells will be eradicated with pre-conditioning the week before the transplant. Then the day of the transplant, referred to as day zero, the new cells are infused into an IV (you’ll have a port) just like a blood transfusion. It takes about 20-30 minutes for this process. Pretty anticlimactic considering all the excitement/anxiety leading up to this moment.
After that, it’s a long, but steady recovery. The first couple of weeks are the toughest with fatigue and sometimes nausea. Once the new cells engraft, (set up housekeeping in your clean marrow) they start producing blood cells and you start feeling better at a more rapid pace.
But recovery is slow. It will take months but usually after the first month you’ll feel more energy returning.
One of my close friends, whom I met while we were at Mayo having our transplants, had MF. She and I are both 6 years post. She has no signs of MF and I have no signs of AML. We’re healthy, fit and in our 70s…as though nothing has never happened.
One (of many) cool thing that happened with my transplant, I no longer have any allergies. I have my donor’s immune system and apparently he was quite healthy.
I’m here along with the group of us, whom I affectionately call my BMT posse, to help you in any way we can. What is your greatest concern or hesitation?