It is a frustrating waiting for results, that’s for sure. BMBXs take time to process. Even though I had the advantage of having on site labs at Mayo, it took several days to get results from the many I had done there.
When getting biopsies taken at my large local hospital, 4.5 hours from Mayo, those tests had to be couriered TO Mayo for testing and results.
So I’m taking a shot in the dark that your spouse’s tests had to be sent to a larger facility. The biopsies are actually bone marrow biopsies AND exams. They’re incredibly detailed, complicated and difficult. They’re not like sending a blood test and having those results in 15 minutes. The BMBX take several days for the hematology, cytology and morphology reports to come back. Often within a day or so a preliminary result of one portion of the test might be back. But again, if your partner’s core sample needed to be sent out for testing, it will take a good 5 days unless all the parts aren’t needed pre-transplant. Mine involve chimera testing and since your spouse hasn’t had a transplant yet, he wouldn’t have that test.
As far as the donor goes, you won’t get much information about the donor. Legally it is all absolutely anonymous and private. Even Mayo Clinic didn’t know the exact name or personal information of my donor. All I was allowed to know is that he was a 20 year old male from the US who matched me 10/10 and he weighed about 225 pounds.
The clinic knew everything there is to know about him genetically of course, but we are not allowed to know personal information. So it’s pointless to even ask. ☺️ At the first anniversary, if the donor is from the US you are allowed to initiate contact through Be The Match or whatever agency the stem cells were procured. You can send a thank you note through the intermediary too. If the donor comes from outside of the US it will take 2 years to be able to initiate contact and some countries don’t allow it at all.
I am sorry that your posts on the portal are being ignored. That is a surprise. Basically, that’s your direct link to your spouse’s BMT team. I’d definitely bring that up with the BMT doctor and team. You need a way to reach them if you have questions outside of the office setting. Also they should provide you with emergency numbers to call as needed.
Have a list of questions, which I’m sure you already do…you’re on top of things…but take that along. It’s ok to be assertive to get answers. Knowledge is power!
Your spouse has already been through an incredibly difficult journey with his AML and the transplant is even bigger. This will test his mettle like nothing else, and yours as well. There will be some very down days, I’ll tell you that up front. But it is doable!! Take each little moment of progress every day as a win. I don’t believe anyone breezes through a SCT/BMT like it’s a walk on the beach. Everyone’s body is different and so the way we recover isn’t always predictable either. Your partner will be very tired with probably little appetite. But each day he’ll grow stronger and after about the first 2 weeks, when the cells engraft things will be on the upswing!!
Do you have any pre-transplant questions about the tests this week?
Fggfgggg
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