By Brett Milam
Editor
I’m just an average person, who when scrolling through Twitter one day, decided I was going to donate a kidney to a stranger.
That’s kind of my personality type: whimsical, nonchalant, and perhaps a tinge adventurous.
When I was 22, I decided I would skydive, despite never having been in a plane before. Two years ago, I volunteered to get Tasered by the Union Township Police Department for its Citizens Police Academy.
At 27, I decided to voluntarily have surgery for the first time to remove and transplant an organ.
It was March 2018, and I came across a Vox.com article from Dylan Matthews, a senior correspondent with the news and opinion website, who talked about his own kidney donation in 2016.
Matthews was my age at the time of his donation, 26, and he made the process seem doable. His donation occurred at John Hopkins University in Maryland, and the kidney was actually flown to a recipient in Cincinnati.
So, I did it this past December to help somebody and give them an early Christmas present. That’s it, that’s the story. But like Vox’s mantra, let me explain.
The first thing I did was email Matthews because three questions occurred to me: 1.) What if a family member needed it later in life, but now I’m down one kidney? 2.) What kind of preparations did you do prior to donating? 3.) Are you still good with it?
I never did get a response, but Josh Morrison, a co-founder of WaitList Zero, did reach out to me. WaitList Zero is an advocacy group founded in 2014 and dedicated to promoting living kidney transplantation. He’s also donated a kidney.
Morrison answered my questions right away in an email, and also followed up with me on the phone.
To the first question, kidney failure occurs in about three percent of Americans across a lifetime.
That’s the first item to know, but let’s say a family member was in that three percent. The National Kidney Registry has an “Advanced Donation” program, which essentially works as a voucher program.
In other words, my donation gave me a voucher for someone in the future. Similarly, since I’ve donated, if my remaining kidney were to fail, I would receive priority on the waiting list for a living donor.
While we’re discussing that: it’s worth noting that my chances of kidney failure after donation are actually better than the general non-donating public’s: 0.9 percent lifetime risk compared to 3.2 percent.
Even when narrowed and compared to the healthy non-donating population, it’s 0.9 percent compared to 0.14 percent. That’s certainly a difference to be aware of prior to donating, but I wouldn’t call it a deal-breaker.
As for the second question, you do have to be in relatively good shape prior to donation. Again, though, I’m an average person. I’m more likely to hit the books than the gym, and Chipotle rather than a salad. But to make it through the extensive health screening process to be eligible to donate, you have to be healthy. That’s why after donation, my chances of kidney failure compare favorably to the general population.
The third question speaks for itself: Morrison is an advocate for living donors through an advocacy group. And it’s also why I’m writing about my experience. It’s awkward to put myself in the spotlight, but it’s not me; it’s about hopefully encouraging someone else to step up as well.
Something else to know before going into this: It’s a commitment. While donating an organ fit into my whimsical personality type, it’s a commitment. For example, if you’re paying attention to the timeline here, I first inquired about donating in March 2018, and by July 2018, I was deemed eligible. I was in the final stages prior to the actual transplant.
But due to procrastination and miscommunication on my part, I had to restart the process in summer 2019, which is why my donation didn’t happen until December 2019.
Worried about work? The transplant team can help you pay bills from lost wages through the recovery process. I will also note that it helps to have supportive and caring family and friends to help you through the recovery process, as I did.
One of the first items I did, other than initiating that inquiry to donate through WaitList Zero, was to select where I wanted to donate. I picked the University of Cincinnati Medical Center to do my transplant because it’s close, and because they do transplants often. In 2018 and 2019, they did 53 kidney transplants. A hospital that does transplants on the regular is the hospital you want to choose because it indicates experience.
After that, the health screening process began. First, there was a pee jug. Yup, a pee jug. For 24 hours, I had to collect all urine in the jug. There were also blood tests – a lot of blood tests. And chest screenings and CAT scans. And talking to a psychologist, a dietitian, a social worker, other members of the transplant team, and the surgeons.
But that’s a few days. While the test results and decision making takes a few weeks and months, the pee jug, the blood tests, and all the testing and talking at the hospital takes about five or so days of your time. Only one of those days is a full-day of being at the hospital.
None of it’s invasive or uncomfortable. It’s knowledge-gathering for them and for you.
I can’t say enough good things about the entire team at UC Health. They’re friendly, knowledgeable, funny, and comforting. While I can’t single out everyone, I certainly have to single out my surgeon, Latifa Silski.
Silski is charismatic, charming, affable and passionate. After a few minutes in the office with her, I knew I was in good hands.
On the day of surgery, Friday, Dec. 13, 2019, it was mostly final check-ups, more fun joking with the anesthesiologist and other nurses. All of them treated me well, and made me feel at ease.
The surgery itself is laparoscopic so as to reduce recovery time and reduce pain for those donating. They did two small incisions on my left side for the camera, and then a slightly longer incision below my belly button to swoop in and get the kidney. It’s a short surgery, with most of the time — three or more hours — coming out of the anesthesia.
That same day, the road to recovery began. I stayed overnight, of course, but even by that evening, I was up and walking with guided help from the nurses, and a walker.
But there’s no reason to sugarcoat it, either; it’s surgery, after all.
The one rough aspect of the first night was the inability to pee because of the catheter from surgery. I needed another catheter to relieve that issue, but after that, I was feeling much better.
By Saturday afternoon, I was walking without help around the eighth floor recovery area, and in my room. I dressed myself (proud to say I showed off my Harry Potter pajamas), and I was sent home.
The first eight to nine days after surgery were doable, of course, but had its bouts of pain, nausea, discomfort, and wishing I was fully mobile and healthy again. Much of the discomfort came from rolling in and out of bed, stomach muscle soreness, and the organs inside reconfiguring themselves.
I was using a combination of Tylenol (no more ibuprofen), tramadol (another pain-reliever), and a pill to help with the nausea. I stopped taking the tramadol by Tuesday because it was making me too nauseous.
I’m not sure the Tylenol regiment (three pills three times a day) did much of anything, either.
Walking, moving, and showering helped because the real issue is soreness.
Nevertheless, for much of that first week, I mostly confined myself to bed binge-watching all five Die Hard films, and then continuing that theme with ’90s nostalgia action-thriller films, such as Armageddon, The Fugitive, and Air Force One.
But even two days after surgery, I walked .65 miles in my neighborhood. By the sixth day, I drove to work. On the eighth day, I walked my dog the full circle around my neighborhood, which is a little over a mile.
By day 10, I was fully myself again. Sure, there’s still mild soreness, but it’s not all that limiting.
Let’s add that up: about five days to get through the health screening process, two days at the hospital for surgery and recovery, and about nine days of “this sucks, but hey, Bruce Willis.”
What’s 16 days of testing commitment and discomfort compared to giving someone a new lease on life?
As Matthews put it, “It’s awful to need a kidney, and it’s really not that hard to give one.” Read about his experience here.
About 100,000 people are waiting for that new lease on life, some have been waiting five to 10 years. About 5,000 people die every year waiting, and another 5,000 are taken off of the list because they are no longer healthy enough to donate, according to the Living Kidney Donor Network.
Deceased donors account for two-thirds of donations at 18,000, but that’s obviously not enough.
Those on waiting lists need living donors to step up.
It’s doable. That’s my story. I stumbled across what I thought was a doable action and I did it.
Everyone’s recovery is different. Yours may be better than mine or you may need more time.
The last thing I want to do is sugarcoat a voluntary surgical procedure. But it’s doable.
This also isn’t meant or able to be a comprehensive checklist for why you ought to donate, but I’m always available to talk about my experience. You can email me at bmilam@www.clermontsun.com.
To learn more about UC Health’s transplant center (and not just for kidney transplants), please visit their website.
Thinking about stepping up? Start with the same form I did: http://waitlistzero.org/living-donation/become-a-donor.