Waiting to Give My Brother a Kidney

7 years ago

I am giving my brother one of my kidneys.

Or rather, I’m waiting to my brother one of my kidneys.

Since he first asked me if I meant it when I offered, as I have countless times over the years, I’m finding that waiting is the hardest part of this journey. And there’s far more waiting than I ever could have imagined. I’ve always known, on some level, that we’d get to this point. My brother had cancer as a baby, a tumor in his kidney. After surgery to remove it, he underwent a year and a half of radiation, to make sure nothing spread. That assault meant his remaining organ never worked at more than 25 percent of its capacity. Along with that, he’s had countless medical issues over the years: diabetes, osteoporosis, high blood pressure, gout, blood clotting issues, digestive challenges -- the list goes on.

A little over a year ago things got worse. He started preparing for dialysis, a process that involved creating a port in his arm that could handle the enormous task of having all the blood in his body pumped out three times a week to be cleaned by machine. But, dialysis was a disaster. He had four surgeries on his port, which didn’t work well, only to have it fail in the end. His doctor’s told him a donor kidney was his best chance. He’d always been insistent that he’d never ask that -- he’d never let anyone be put in jeopardy, to compromise his or her well being for his sake. Every time I offered to be tested, I was flatly turned down.

And then I got a text over Thanksgiving weekend, asking if I was serious. Suddenly my blithe, cavalier gesture became real. It wasn’t that I hadn’t meant it before; I just knew he’d always say no. For two days I grappled with the enormity of this decision. Could I handle this? Could my family? What if something tragic happened? But, in the end, there wasn’t a decision to make. If I was a match, my kidney was his. 

Pocket Watch ClockThe first wait was for an initial appointment with the transplant coordinator. Two weeks later she made sure I knew every single thing that could possibly go wrong. For an anxious person with a vivid imagination, it was a trying way to start the process. We then waited for almost two hours in the lab to give blood, finally giving up and coming back the next morning to give up six vials each. The next two plus weeks were endless. My life was either going to dramatically change, or everything would stay exactly the same. I wasn’t sure which I wanted more. Two days before Christmas I got the message that yes, I was a match. As I waited for my brother to pick up his phone or respond to my frantic texts, tears burned my cheeks as I stood on a city street corner, traffic blazing by. 

Going forward, at any moment, it could have been over. Five minutes into my first appointment with the transplant nephrologist, my blood pressure was too high. It turns out there was a problem with the monitor. I failed four urine tests. I now know how to properly wipe before leaving a sample, that one should not collect the first of the stream, and to never, ever take the test when you have your period. But, after three plus months, 22 vials of blood, two 24 hour urine tests (they forgot to check something the first time around), a double abdominal cat scan, a spur-of-the-moment psychiatric evaluation with three doctors, a complete physical with the donor surgeon, a weekend long cancer scare and more anxiety than I thought I could handle, I was cleared as a donor.

Meanwhile, I’m still waiting.

We’d had a tentative surgery date. But, at the last minute they decided my brother needed additional testing. Yes, they’re being responsible and cautious and making sure they’ve checked everything as thoroughly as possible, which is all good, but I’ve been standing on an edge that keeps narrowing the longer this goes on. I can barely balance anymore. At any point this everything could, still, fall apart. In the past few weeks he’s survived the hematologist, the gastroenterologist, and the sonogram of his liver. Tomorrow afternoon he gets results of yet more blood tests, and should those be ok, we get a date.

If not, I don’t know.

It’s an indescribable feeling, knowing that I wouldn’t be here if I weren’t exceptionally healthy, watching my brother’s health deteriorate the longer this goes on. And the longer we wait, the more I’m shutting down. My body gave out and an intense sinus infection moved in. My concentration’s at an all time low. I can’t focus. I can’t accomplish more than the bare minimum to get through the day. My face is breaking out like it hasn’t since ninth grade. To have been staring down surgery only to have it pulled out from under me knocked me flat. Not that I was rock solid about facing my first operation ever, a 4-6 week recovery, the thought that in spite of everything, my brother’s body might not adapt to this new kidney, and then what.

There’s a lot of panic right now. More unknowns than I’d ever want to face. Mind-boggling stress that I wouldn’t have had to confront if I hadn’t chosen this path. But, in those moments I can breathe deep and look at the bigger picture, I’m nothing but grateful to be able to be here. To be a match. To be healthy enough to go through with this. To have a family that is supporting this journey. And to offer my brother hope of a healthier future. 

 

www.elissastein.com

Photo Credit: svadilafri.

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