Living Kidney Donor: A Connection Spanning Over 2,500 Miles

After seeing a Facebook post about a friend in need of a kidney, Doug Neumann, filled out the paperwork to see if he could be a match and ultimately a living kidney donor. Doug hit challenges during the testing process but was able to connect with Amy Woodard, the Kidney Transplant Coordinator at UNC, who cleared the way in making the kidney donation a reality, forever impacting the lives of two families.

Living Kidney Donor: A Connection Spanning Over 2,500 Miles click to enlarge Doug Neumann and the Carson family

In October of 2018, Doug Neumann, 44-year-old husband, and father of two, was scrolling through his Facebook feed. He noticed a post from a distant friend, Jason. Jason posted to the Facebook community that his wife, Kari, had been diagnosed with polycystic kidney disease, a hereditary disease that causes cysts to grow in the kidneys leading to eventual kidney failure. Kari had reached the point in her disease where she needed a new kidney. Jason posted a plea to friends, and the extended Facebook community to consider being a living donor and giving a kidney to his wife. The post included a link to a website to fill out an electronic application for potential living kidney donors to complete online.

Kari was being treated at UCLA medical center, where the deceased donor waiting list in California for a kidney on average is 7 to 10 years. The sad reality is that 20 people die each day waiting for a transplant. Kari, like many other individuals, developed kidney failure and was on the verge of requiring dialysis. Dialysis is a treatment to help patients keep their bodies in balance by removing waste, salt, and extra water to prevent them from building up in the body; keeping a safe level of certain chemicals in your blood, such as potassium, sodium, and bicarbonate; and helping to control blood pressure.  According to the Nation Kidney Foundation, life expectancy on dialysis can vary depending on a patient’s other medical conditions and how well they follow their treatment plan; but on average, life expectancy on dialysis is 5-10 years with some living between 20 to 30 years.

Doug reflected on the Facebook post for a few weeks and eventually filled out the application. “I didn’t jump on it immediately,” explains Doug. “It took me a few weeks to get around to completing it, but I ended up filling it out around late November, early December. They called me right away and told me I was a potential match, and they would be sending me what’s called a cross-match kit. They warned me that I might have some trouble finding a provider to draw the blood for the kit. I have a great relationship with my primary care provider, and he has always been easy to work with, so I figured it couldn’t be that hard.”

The cross-match test is an important part of the living donor work-up and is repeated just before the transplant surgery. The kit includes vials for the blood draw, labels for the vials, and pre-addressed packaging so everything can be shipped back to UCLA’s testing facility. The blood drawn from the donor is mixed with blood from the recipient. If the recipient's cells attack and kill the donor cells, the cross-match is considered positive. This means the recipient has antibodies "against" the donor's cells and the donor is no longer a good match for the recipient. If the crossmatch is negative, the pair is considered compatible, and donation becomes more of a reality.

Doug received the kit mid-December and after much back and forth with his primary care physician, urgent care, Quest Diagnostics, and LabCorp that left Doug feeling frustrated, he finally spoke with this neighbor Greg Balfanz, anesthesiology at UNC in Chapel Hill. “When I told him (my frustrations) his response was, ‘really, you're trying to give your kidney away, and nobody will help you do that?’ He connected me with a transplant surgeon at UNC, Alexander Toledo, MD, who then connected me with Amy Woodard.”

Amy Woodard is both the Living Donor Transplant Coordinator and the Lead Coordinator for all kidney transplants at the UNC Center for Transplant Care. She facilitates the entire process for potential kidney donors, from fielding first calls and doing screening questions to scheduling blood testing and evaluations, as well as presenting cases to donor committee for review. Once approved, she is in charge of scheduling the actual donor and recipient surgeries. Amy has been the Living Donor Coordinator since 2013 and has helped to coordinate over 175 kidneys for transplantation. Before that, she was the recipient coordinator from 2001-2013, totaling over 18 years with UNC Health Care. Before joining UNC Amy was an outpatient dialysis nurse for six years which has assisted  her in understanding intimately the progression her patients face when dealing with kidney failure from their dialysis treatment, their wait for a kidney on multiple lists and in the cases of happy endings, the receiving of a healthy kidney to help prolong their lives.

It was the middle of January when Doug finally connected with Amy. He reached out to her via email, and she was able to help him through the whole process. Doug sent her all the necessary paperwork allowing Amy to deal with the paperwork on the UNC side and figure out billing.

“The issue that many people have is that it’s a 3rd party billing,” says Amy. “That means that donor testing is paid for by the Kidney Acquisition Fund, which is a branch of Medicare, which can sometimes complicate the process. However, UCLA included a letter explaining all of that in the kit, and as a coordinator, I’ve done this same thing for our donors across the country, so I was familiar with the process. Once we had all the paperwork done, we set up a time for Doug to come in for the test.”

“Amy’s being modest,” says Doug. “The conversation with the other providers never got as far as billing.  I think they simply didn’t have a precedent for drawing blood that would be tested elsewhere, and they didn’t care enough to work the system to figure it out.  The difference with Amy and UNC is that they cared.”

Doug got to the hospital and registered at the front desk. He texted Amy, and she came down and walked him and the kit to the phlebotomist. She stayed with him as his blood was drawn, filled out the labels for the vials, and spoke with the phlebotomist about what they were doing and why. “UNC has a ton of phlebotomists, and this process gave me the chance to educate them about what a cross-match is and how we work with centers across the country,” explains Amy.  “It’s foreign to many of them at first because normally they draw the blood and UNC does the testing. However, in this case, our responsibility ends at just drawing the blood. The vials are packed away and sent to UCLA for testing.”

When the blood draw was completed, Doug left the kit in Amy’s safe hands, and the search for someone to help him do the cross-match was complete. Amy packed the kit away and shipped it out to the coordinators at UCLA who took it from there. “Long story short,” says Doug, “it's really hard to give a kidney away remotely if you don't know how to get connected with somebody like Amy. However, then once I got connected with Amy, it was smooth sailing. It was completely hands-off for me. I just had to show up, smile, put my arm out so the phlebotomist could draw blood and Amy just took care of it. I was just blown away at how she had taken what had been so hard, a real impediment to the process, and relieved me of that stress.”

A couple of weeks later, Sheila Alcantara, the Kidney Coordinator at UCLA, called Doug. She informed him that while he was a match, they had a better match that they were going to pursue. Doug was somewhat relieved, going under the knife was a scary thought, and he was happy that someone else was able to step up and do this for Kari. Fast forward to late February, Sheila called Doug and let him know that the other match did not work out and asked if he was still interested in donating his kidney?

Doug was still interested, so he and his wife flew out to LA for him to receive a workup of tests. The full set of tests Doug underwent as a potential donor included 24-hour urine collection, fasting labs, CXR, EKG, CT Urogram, nephrology consult, social work consult, psychiatry consult, surgeon consult, and donor education class. If any result is abnormal or the team’s assessment indicates, additional testing or consults may be ordered. Once the tests were completed, the Donor Selection Committee reviewed his case and decided he was an excellent kidney donor candidate. Now it was up to Doug to decide if he was going to move forward or decide it wasn’t right for him.

Back in North Carolina, Doug took a week to think it over, contemplating what was compelling him to be a living donor. “My thought was if people can’t do this for each other, what kind of world do we live in? I didn't serve in the military; I'm not a firefighter that runs into burning buildings and saves lives. I’ve lived a pretty sheltered life, and I feel like I owe this to the world. It's a humanity kind of thing. Then I also thought, I've always been pretty healthy, no history of kidney problems in my family that I know of. I've never heard of somebody having a traumatic event and thinking ‘Oh Thank God I have a 2nd kidney because the 1st one was damaged.’ It seemed really unlikely that I would in my life need a 2nd kidney or that I would need to give it to somebody else in my family.”

When Doug was sure he was ready, he sent a Facebook message to Jason that said, “I’ve got this spare kidney, and apparently it's a match for your wife, you want it? Let’s chat.” During the testing process, the recipient and her husband remained unaware that Doug was the potential match. They knew someone was being checked out but were kept in the dark about the other party. That same day everyone got on a phone call to talk.

Before the surgery could take place, another cross-match was required. This time Doug wasted no time in contacting Amy. They repeated the process once more. Doug checked in at registration and texted Amy. She came down, walked him to the phlebotomist, blood was drawn, and Amy shipped it out to UCLA. After completing the testing on their side, everything still looked good, and they scheduled the surgery. Doug headed out to LA with his wife in mid-June.

The day they arrived in California, Doug and his wife met up with Kari and her family for lunch, the last meal before surgery for both of them. The last time they’d seen each other was at Jason and Kari’s wedding in 2010, nine years ago. Doug’s in-laws were neighbors to Kari’s in-laws, who were also out in California visiting so they could help watch the kids.

All went well with Doug’s portion of the procedure, and he was discharged the next morning but was required to stay in the area for ten days. Doctors didn’t want him getting on a plane back to North Carolina just yet, especially since he needed to return for his ten-day surgical postoperative visit. He was given the all-clear to travel after his appointment and headed home.

“I’m amazed at just how easy the actual surgery and recovery has been.  The procedure is laparoscopic, so there are minimal cutting and limited pain.  Three days after the donation, I was finished with the prescription pain medication, and I was taking long walks around the UCLA campus.  I worked remotely throughout the recovery and didn’t lose any time there.  Before that October Facebook post, I didn’t realize that living kidney donation was something that people can do.  But now I know how very reasonable of a thing it is.  The benefit to the world is immensely greater than what it took from me.”

He keeps in touch with Kari, and to receive updates on how she is progressing. “Her early numbers are great” Doug reports. “I love getting these texts with results. Her creatine levels before she received a kidney were over 3, while the normal range is between .6 and 1.3. Hers are now down below .9, so they're on the good half of the normal range. Her globular filtration rate (GFR), how much your kidney can filter per minute or per unit of time, has come down in the normal range. A week after she's received a kidney, she already has a normal person kidney function. I never used to tear up about this kind of thing before all of this, but now, I think about the fact that I could give her the gift of time. She now has years to spend raising her two young kids. I’m glad I was able to do that for her with the help of the great people at UCLA and Amy here at UNC. ”

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