I haven’t spoken about this much publicly until now. I’ve posted about it off-and-on on Mastodon, but haven’t taken the time to really piece together the words that I want to share. The truth is, until recently, I don’t think I could have spoken much about it.
For those who aren’t aware, I received a kidney transplant on March 4th of this year. My incredible cousin, Cheryl, was fearless and unwavering in her desire to donate a kidney to me. Living donor kidneys are the holy grail for kidney patients: they have the fewest complications, the longest survival rates, and the overall best outcomes. Surgeons and doctors roll out the red carpet for these events. They are meticulous. The utmost care is taken to make sure nothing goes wrong.
Something went wrong. The evening after my transplant, it was already apparent something was wrong. I was too tender. I had an ultrasound. I had, I think, another ultrasound. Nurses and doctors checked on me frequently. By morning, my surgeon was tired of waiting; she was certain — she knew.
I was rushed back to the OR, where it was confirmed I had a blood clot in my transplanted kidney. They had to take it out, flush it, and put it back in. This process is violent and shocking for the kidney. When it happens, they go to “sleep.” It was thought it would just take some time to wake up. A few days, maybe a week or two.
In the meantime, I couldn’t wait. I had to be put on continuous dialysis for a few days. I received blood transfusions. I had a central venous catheter installed, a set of tubes going into the veins and arteries around the heart, so I could receive ongoing dialysis treatments once I left the hospital.
The days and weeks of waiting turned into months. I reached the point of no return, where they rule the kidney transplant a failure. Patient graft non-function, the official designation.
So why did this happen? What went wrong? I don’t know, and I don’t think I’ll ever truly know. What I do know is there was nothing wrong with the kidney that my cousin donated. It was in perfect health. She is in perfect health. It was the most amazing gift.
I think part of the problem was the hospital decided to try a somewhat new technique involving a robot, of which I was the 7th or 8th person at Duke to have received this procedure. I’m told I’m still the only one for which this has not been a success. I’m also told that the kidney was larger than they expected when they actually got to it. I find this surprising since they had conducted imaging and knew the length of it precisely, but they had to go back and make our incisions larger than planned to make the switch. Perhaps that had something to do with it. Or maybe, and most probably, it just comes down to bad luck.
If there is one immutable truth about the universe, it’s that shit happens.
The odds of this particular complication happening are a fraction of a percent. It’s really a statistical anomaly; and the odds of it happening again, I am reassuringly informed, are astronomical.
I’m now back on the transplant list. I’m receiving dialysis twelve hours per week, rising in the early morning hours to make a 5:30am chair time. If no new donors come forward, I will have to wait until another kidney becomes available from a deceased donor, something that will likely take a few years.
There are a few bright spots. One is, despite the anti-rejection meds I’m still taking (we don’t want to build up antibodies for the new kidney, even though it’s not working — it might jeopardize the success of the next one), the hemodialysis I’m on has me feeling much like my old self again. I have more energy, more pizzazz, more mental sharpness.
The other bright spot is, Duke University Hospital is now part of the national kidney donor registry, which opens up the possibility of a paired exchange. With a paired exchange, I no longer need a donor who is geographically close to me or Duke Hospital. I also don’t have to find someone with an ideal match for my kidney. In both cases, someone wanting to donate to me could donate their kidney, and it would go to someone in need that is a good match for them in their local area; in return, I am moved to the front of the list and will receive a living donor kidney from someone else doing a paired exchange in the same way (who is a good match for me).
All of that is to say, if you’ve ever considered a life-changing kidney donation but have been put off for any reason (being too far away, being older or younger than me, being larger or smaller than me, different blood types, etc.), almost all of those barriers have been broken.
If you are interested in exploring possibilities for donation, you can register here to start the screening process to see if you would be a good fit for donation. Of course, there is no expectation, nor obligation. Giving up a kidney is a huge, huge sacrifice, and involves a surgical procedure; it’s not something I take lightly or take for granted.
In any case, I can’t thank everyone enough for how supportive they were during the first transplant, and the difficult weeks following it. I received so many cards, so many kind gifts and love offerings, and an absolute torrent of well wishes and prayers. Thanks to my family for taking care of me for many, many weeks, thanks to my coworkers for keeping things afloat in my absence, and thanks especially to my cousin for the greatest gift I could ever receive.