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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: Jun 18 8:57pm | Replies (402)Comment receiving replies
It’s never a dull moment with SCT!
My liver functions went back to normal, but then last week my platelets tanked to 8, in just one week. So, I was admitted into Mayo for 3 days for platelets, igg and steroids. Numbers came up, but today back down again (96). So, it’s a juggling act. My tacro is .5mg/day plus acyclovir and voriconazole.
No more 3 x week Bactrim but now pentamidine nebulizer once a month.
One odd thing is that 2/3 weeks prior to my low platelets, I received my first set of vaccinations, 7 of them at once but not the Covid vaccine yet. I’m hoping this was an underlying factor.
My bone marrow and CD33 are both 100% donor and CD3 is still 80% donor.
So the juggling continues. I am very grateful for my Mayo team and look forward to when I can get away for travels. My best wishes wishes to all!
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@waveg I always say we SCT patients need to keep a sense of humor and a sense of adventure. Never quite know from day to day what fun, delightful obstacle will drop in our path! LOL
It’s great your liver numbers are back up. But it sounds like knife juggling is out for a while with low platelets. ☺️
It’s interesting that the change came within that 2-3 week period where the immune system starts the adaptive immune response.
When we get our vaccinations after transplant they’re intentionally ‘dumped’ together. We get the greatest benefit and response from our new immune system when we receive all of our vaccines at one time. So our new defense mechanism really gets a chance to be aggressive.
The steroids stop the over aggressive response. Hopefully this is just a reaction to the vaccinations and all will be back to normal soon enough.
You had an IgG test run to test for inflammation/infection and immune response. Did your transplant team have any comments regarding this?
It is a juggling act when balancing meds. Our bodies are so unique at this point, ‘one size does not fit all’. Your immune system is still in early stages of development. It isn’t considered adult until the 2 year mark.
You’re no longer an infant but you are early teens. LOL It’s still pretty temperamental.
So hang in there! Eat foods rich in vitamin K, green leafy veggies, carrots, folate, milk, etc..
When’s your next blood test?