What we've gone through in the last 36 hours. . .
Well, a brief of what's been going on for the past month -- my mother had spine surgery March 1 in Michigan, then began battling a series of infections. She was in the hospital a week and has been in a nursing home since then. She seems to get better, then catches something else. I've spent days calling back and forth to my father, to doctors, to social workers, to admissions directors, to nurses and to care coordinators.It seems like my father and I are yanked back and forth between joy and despair on a daily basis.
So, on Monday morning, when I woke up expecting to track down whether my mom had a cold, pneumonia or some other kind of infection, I had a message from my transplant coordinator on the phone. "Your test results show you have donor-reactive antigens, which means your body could react to Cheryl's kidney. . . This happens very rarely, but when it does, we consider it too risky to transplant that person's kidney into you." She said Cheryl and I needed to come in for further blood tests.
I raced down to the U and let the clinic know I was there. Then I went out and stood in the middle of Delaware Street (the only place I can get a cell-phone signal) leaving messages for my mom's nursing home, the care coordinator and pleading with a neighbor to go up and tell my dad to put the phone back on the hook so all these folks could call him. I missed my first call and waited another hour -- a soggy, distracting little island in the waiting room. Nothing inspires more confidence in a clinic than a patient sitting in the waiting room crying, I'm sure.
After a blood draw, I made it back to my car -- despite not having paid any attention to which floor of the ramp I'd parked on -- and got a call from my father as I pulled out. My mother was doing great -- had walked 200 steps in physical therapy that morning -- and, despite a congested-sounding cough, was in good spirits. She was on vapor therapy and antibiotics. What a relief.
However, I was still a wreck and couldn't conceal it from him. I told him what was going on; he knows what that feels like after having been "called" for a cadaver kidney only to find out after further testing it wasn't a match. "That's a real big fall," he said. Next, I had to tell Randy.
And then, of course, I had to start searching medical journals to try to figure out what was going on.. Nobody knows for sure what triggers donor-specific antibodies; one theory is that the number of vaccinations you go through prior to transplant -- a hepatitis B series of 4 shots, pneumococcal vaccine and, in my case, a chickenpox vaccine to try to prevent shingles -- jacks up your immune response. The second leading theory is "We just don't know."
(Unlike what one of Cheryl's friends suggested, Cheryl has NOT been biting me!)
She didn't take the chance to back out, bless her -- she said she'd be willing to do a paired-donation plan, where she'd give her kidney to someone else who needed one, and I'd get a kidney from someone willing to donate one. However, we'd lose the luxury of planning it around our own schedules, especially considering mine also includes having my native kidneys removed 6 months from the TX surgery. The small amount of yard work I've done this spring has proven they're more painful than ever, and I just don't want to wait any longer than I have to to get rid of them.
And then there's Cheryl's wonderful family -- her mom Mary, dad Jim and sister Cindy. Do you know what Mary told me? She's telling her friends to check out "our third daughter's blog about her kidney." She told me, "After all, you're going to have our DNA!" Thinking about letting go of that promise was almost harder than letting go of the transplant.
So, a long night and a hard day on Tuesday, though a lot of support from my co-workers, who knew what was going on since I'd missed the day's work on Monday.
And then -- a miracle. The Monday testing showed though I do have a slight donor-specific antibody response, it's not enough to call off the transplant. It's all in numbers -- mine range from 600 to 900, and under the 500 level, they don't even worry about it. The high end of the range goes up over 10,000, so that gives you an idea of where we are.
My transplant coordinator had texted back and forth with my surgeon, who's in Utah this week, all along the way and got back "It's a go!" from her. I imagine her at the top of a ski run somewhere, thinking "Of COURSE this would have to happen with Holly. . ." Something about our interactions makes me think I'm the "Shopko kid" at the transplant center -- the one everybody knows by first name.
So, thank God, we're still with our plan.
And, as Cheryl predicted, after the last day and a half, we'll probably both sleep REALLY well tonight.
------later -----
Well, mine may not be the face that launched a thousand ships, but I have an immune system that's launched a research study!
My surgeon -- when she got back into town from that ski trip -- called to say that yes, we were a go on the transplant, and besides that, this episode had inspired the team to look into low-level DSA measurements and exactly how much they do count in long-term transplant survival.
"We got to talking about your situation, and it seems like time to look at it further," she said. "We agreed that someone should look at people with mild DSA reactions like yours and see how they did over the long term.
"And that means I get more work!" she said cheerfully. (As much as she loves doing surgery, and she has said just that in so many words, she's also apparently ready to slice into long-term tracking studies to ferret out this information.)
Meanwhile, Cheryl and Cindy will also be a long-term study of their own. Two sisters just two years apart, with similar dietary habits and living in the same house -- it's just too good for the U to pass up.
They'll test both sisters once a year in a daylong workup to see exactly how they both do over the long term. Is Cheryl's sole kidney keeping up? Have there been some kinds of changes that mean she's getting sick more than Cindy? etc.
So, my panic has launched something that may be helpful and prevent panic for hundreds of other patients. And Cheryl will have a lifetime's worth of diligent, no-stone-unturned annual physicals.
I hope that's good for both of us.
