While we were driving to Rochester last night, Babygirl pulled up her MyChart to see if there were results in from her second “I-don’t-know-what-it’s-called/DNA” test. They did one back in March, and drew another a week or so ago. Again, the purpose of this test appears to be to see if the transplant is shedding more DNA than it should (potentially an early sign of rejection). The doc sent her a fairly detailed email regarding the fact that neither the last test NOR the current one are normal. He outlined a plan for dealing with it, but since we were going to see him the next day anyway, I didn’t focus on that.
I focused on Babygirl. We’ve talked about how the test works to the best of my understanding. But since the Doc mentioned the possibility of needing to biopsy the kidney, the conversation was a bit more….specific. She’s had biopsies before, no big deal. But sometimes the results lead to a significant hospital stay, like this:
She is flying to California next week to see her sister.
Right after she returns, I am going on the mission trip.
Neither of us wants to miss these things.
So we talked about how much I’ve tried to just live life, knowing that I might have to be ridiculously flexible with plans and promises. We can’t stop planning trips and vacations and family gatherings and concerts. We can’t. We MUSTN’T. And knowing the fact that things in our lives can change on a dime shouldn’t matter.
It’s not just her health. It’s everything. It’s the unexpected car breakdown, the unanticipated illness, the heretofore unplanned funeral. I, perhaps more than many people, have a deeply embedded understanding that, well, shit happens. Until now, I’ve done all or the shifting, the re-planning and the adjusting. This is the first time that she’s had to look at the possibility of a drastic, disappointing change in her own plans (her first major solo travel event!).
The best I could do was to say, “Let’s wait and see what he says tomorrow.”
Well.
The DNA testing IS abnormal. There is more transplant DNA loose in her system than there should be, but….both of the tests are identical, 3 months apart. Somewhat abnormal, but as stable as one can determine from 2 tests. This leaves her doc uncertain as to how to proceed, exactly, so the told us that with her morning labs today he had them draw a test for donor-specific antibodies. A tie-breaker, sort of. If there are antibodies, she needs a biopsy. If there are not, they will repeat the UBER/DNA test in 3 months, maybe 2. Either way, the test results won’t be back for about a week, so go ahead and fly to Cali and have a good time.
Hoping sincerely for no antibodies. With the last transplant, donor-specific antibodies were detected a year after the transplant, It took only 8 years for the kidney succumb to them: A Bolt From the Blue….
After gently telling Babygirl to live in the moment, and not borrow trouble, and to plan and live like nothing is going to happen? I need to settle down and do my best to take my own advice. Managing the unmanageable is FAR above my pay grade.
DeeDee
PS To be honest, I AM better at this than I was. Doesn’t make it suck less, tho.
PPS Yes, the test knows that she has 2 transplanted kidneys. It’s abnormal either way.
- The Renal Warrior Project. Join Now
- Source: http://kidneedsakidney.blogspot.com/2024/06/above-my-pay-grade.html