“You’re not as unique as we thought you were!” exclaimed my mom when I told her the news.
Pediatric BMT Nurse Julie called late yesterday saying they had already run the Be The Match Registry data search and found “a good number” of potential donors. “I know the news about Jack was hard yesterday, but this is really good news.”
“Is this out of the ordinary?” I asked, wondering if the quick matches would lead to the bigger prize – an earlier bone marrow transplant. Dr. Arndt said it usually takes three months once the Registry search begins until you actually get the good stuff.
The fastest Julie has seen things move is two months. But I’m definitely on the fast track. It’s a process:
- My insurance company needs to approve the plan to re-test all my potential matches.
- The Registry team tracks down each potential donor (some may have moved, decided they no longer want to give, etc.).
- Each potential donor needs to go in for additional blood work. Most originally submitted cheek swabs, so they need to get more information – we’re talking molecular HLA level – as well as make sure they haven’t contracted diseases like HIV or hepatitis. No one wants that.
- My doctors act as my own little cupid and compare my potential matches, searching not only for the best marrow match, but if we have the luxury, the healthiest.
- The marrow donor finds a time convenient for him to have the short (and remember, pretty painless) procedure.
That hopefully puts us in early May. In true Langer women fashion, my mom wants to beat the two-month record. If it were up to her, she would be making the calls and driving people to their appointments. Apparently that’s not in sync with HIPAA.
So what do we do in the meantime? Well, for starters, I’m getting a bunch of teeth taken out on Monday. One tooth (in the back, people) is dying from the radiation I received and is a probable source of later infection. Since he’s in there, my DDS, MD wants to remove my wisdom teeth, another source of potential infection. The challenge is that because I had radiation in the area, my blood vessels have shrunk, making healing more difficult. Plus, my platelets are über low, so I’ll get a platelet transfusion before surgery.
Dr. Arndt is diligently collecting input from a host of experts on what treatment, if any, I should receive while I wait for my BMT. We’ll have that conversation next week. As I said in an earlier post, the trick is to keep a cap on the MDS so it doesn’t turn into AML, but also to keep me as healthy as possible to make sure this BMT thing works.
Until then, I can’t get this song out of my head. It may as well be in yours too.
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