One Family’s Journey of Kidney Disease and Transplantation
Story by Mary Hope Roseneau Photography by Christian Lee
According to the US government organ donor website (www.organdonor.gov) there were exactly 33,611 organ transplant surgeries performed in America in 2016. As of August 2017, the registry has a waiting list of approximately 116,000 patients, all in dire need of a miracle, including children, adults, men and women. The website states 20 patients die every day while waiting on this list.
This story is about a young man, Zach Ruhlin, who desperately needed a viable kidney, whose mother, Kelly Ruhlin, gave him hers.
Pink: Tell me about your family and things you like to do:
Kelly: My husband, Eric, is from Connecticut, and I am from New Jersey. We met in Key West and moved to Hilton Head Island 27 years ago. Our sons Zach, 21 and Will, 16 are Island natives. Eric owns East Coast Contracting and Cabinetry and Low Country Concrete Coating. I am a realtor with Weichert Realtor Coastal Properties and love what I do. We are very involved in our sons’ school and sports activities.
Zach: I enjoy spending time Mom, Dad and Will. I try to get outdoors often to golf and hang out with friends, when I’m not away at college.
Pink: Tell us about Dent’s disease and kidney failure.
Kelly: Zach was a healthy little boy, but had excessive thirst even as a preschooler, and we wondered about that. He was diagnosed at age 8 with Dent’s Disease, a rare congenital kidney disease, and we were keeping a close eye on it. At the end of ninth grade, however, he started having pain in his chest, which was misdiagnosed as acid reflux. Finally, in his junior year, a doctor in Savannah diagnosed a problem with his gall bladder, and it was removed in emergency surgery. Zach’s kidney function was compromised by the undiagnosed gall bladder problem, and he never seemed to get better. He ended up in Medical University of SC (MUSC) Children’s Hospital for 14 days due to kidney failure. We were hopeful that his kidneys would regain function, and they did for a short time, but declined again. When in kidney failure, you look like you are fine, but you have flu-like symptoms. He had already been offered a college golf scholarship, but he was too sick to do anything. I knew we had to do something fast. He needed a new kidney, so of course, I said he could have mine. Zach was missing so many milestones of high school: social life, prom, sports and graduation. I didn’t want him to be forced to endure dialysis at such a young age.
Zach: Dent’s Disease was unknown at the time, so I had to have a lot of testing done when I was younger. When they figured it out, I just had to get bloodwork done a lot, but I was pretty healthy. After my transplant, and when they removed my native kidneys, I got rid of the disease. It does not return in donor kidneys.
Pink: What was it like in making the decision to donate your kidney? And, to receive a kidney?
Kelly: I didn’t give it a second thought. There was a quite rigorous screening that I had to go through, even interviews with a clergyman and a psychiatrist. (Kelly confessed, “I was so paranoid talking to the psychiatrist that I would say the wrong thing!”) My family and friends were all supportive, and others were willing to donate their kidney, as well. After a seven-month period of extensive testing to make sure both of my kidneys were functioning well, and one would be a match for Zach, I was finally approved. We checked into MUSC on July 22, 2015, and had our surgeries there. We were able to leave the hospital after three days, but had to comply and stay close to the hospital in a hotel for an additional two weeks. Zach left the hospital and was sent home, but had to do a lot of follow-up until they realized they needed to remove his native kidneys, which were causing problems.
Zach: I was thankful for my mom being a match. She seemed to be good with her decision.
Pink: How are you both doing now?
Kelly: I’m doing fine. You know a person can do perfectly well with one kidney, and I feel great. I have educated myself on this subject quite a bit, so I was very prepared for the operation. In addition, my sister Robin was a terrific help throughout.
Zach: I am doing well and go to Tri County Tech College near Clemson. I missed so much high school and the ability to head off to school that I am glad to finally get to this point.
Pink: Do you have to be on any special diet or medication?
Kelly: No, I only have to drink lots of water.
Zach: My diet is low in protein, lots of water, and I watch certain meds that I put into my body.
Pink: What is the new research program that your family is hoping to be a part of?
Kelly: It’s called Regenerative Medicine research, in which your own body’s stem cells are collected and injected into a kidney shaped form, printed by a 3-D printer, and then they somehow know to work together and create a new organ, in our case, a kidney, of your own unique cells. Dr. Anthony Atala of Wake Forest Institute for Regenerative Medicine is one of the foremost researchers in the world, and is currently developing this technology. Zach is not currently in a clinical trial procedure, but stay tuned!
Zach: We preserved my diseased kidney and the hope is to take it, isolate the good cells and grow a kidney from them.
Pink: The Hilton Head Island community has been very supportive to you folks. Tell us about some of the activities you’ve been a part of.
Kelly: I am thankful to have great family members, like Robin and Eric, who were our caretakers after the transplant. I am also thankful for incredible friends, who took over my life for me while I was going through the process. They helped with Will, cleaned my house and provided lawn service and food three times a week. I never wanted help, but found myself so thankful and aware of the need to both give and to receive.
A few community members from Wexford Plantation had a fundraiser for my family, hosted by The Heather Trew Foundation. I was blessed to have Judy and Dwight Trew’s guidance during our transplantation. Their daughter Heather had a kidney transplant as a result of getting e- coli from a contaminated burger at a church picnic.
Their endless support and experience gave me comfort in navigating the ins and outs of transplantation. The Heather Trew Foundation for Organ Donation and Research educates and registers potential donors, who can help save the lives of thousands of patients waiting for a transplant.
Also on October 5, I, along with several committee members of the nonprofit organization, “The Friends of Children of Hilton Head,” hosted a lecture featuring Dr. Atala and Dr. Keith March to come talk on “Adult Stem Cells: Medicine of the Future.” We had a great turnout! Google Dr. Anthony Atala. He has many videos online of him on “TED talks,” “60 Minutes” and the “Today Show.”
Zach: We had a golf event in our community of Wexford for my family. It was really nice.
Pink: There was an actual picture of the donated kidney on Facebook! Tell us about that.
Kelly: The doctor gave my sister that picture, and I didn’t know it was out there for everyone to see! It’s OK. I think we should include it in the article. I was very surprised how big it was. It is very interesting to see the actual organ. However, it’s a beautiful thing.
Zach: The picture looks good to me, especially because it got me out of the house and back doing what I like to do.
Pink: What 3 things would you like readers to remember?
Kelly: I’ll share my bucket list with you, and I’ve crossed off the first two! 1. Host Dr. Atala for a lecture on his Regenerative Medicine research, and I did in October! 2. Meet Mrs. Lois Richardson, a mom who donated her kidney to her son 50 years ago. What a pioneer and brave lady. I was so inspired by meeting her in person; and 3. I feel a responsibility to give other people hope, and I am currently mentoring two people who are just starting the transplantation journey.
Zach: I am good, good, and good!
At the end of our visit, Kelly said, “I was chosen somehow to make this my life’s work.” Her interest in adult stem cell therapy goes beyond her son’s failing kidney problems. Scientists, such as Dr. Atala, now know that a person’s own stem cells can repair and restore many diseased or damaged tissues. A close friend of Kelly’s has taken her autistic son for treatment in Panama, and the results are promising.
Kelly and Zach are a powerhouse team, and their determination and bravery will pave the way for many others in the future. As Kelly said, “Stay tuned!”
To register to be an organ donor, go to www.theheathertrewfoundation.org.