Ebert’s Transplant Journey: Like Night and Day

At the end of 2007, Ebert Mahon’s family went on a cruise. When he noticed early in 2008 that he was gaining weight, he figured that the cruise’s all-you-can-eat buffets had taken their toll. In his late 40s, Mahon normally tipped the scales at 180 pounds. But soon enough, the number crept to 235. “Could I really have eaten that much on the 10-day trip?” he wondered.

At an appointment for routine bloodwork, Mahon’s results revealed that his creatinine level was at 1, higher than the .5 norm. His doctor referred him to a nephrologist, who monitored him over the next six years as his creatinine went up from 1 to the low 3s. However even as this was happening, “he never sat me down to say, ‘Your kidney function is starting to get worse. Here are some things you can do in terms of diet and exercise,’” says Mahon.

When his GI doctor urged him to see a new nephrologist and gave him a business card for Dr. Abrar Husain, Mahon decided to make the call. At his first appointment, Dr. Husain gave Mahon a book on kidney disease that explained the fundamentals of what was happening inside his body and what he could do to extend his kidney function. “Reading through the book left me a bit shaken,” says Mahon, who is now 62. “Dr. Husain said we can’t reverse what has happened, but we will help you maintain what you’ve got for however long you can.”

Dr. Husain enrolled Mahon in Healthy Transitions, a program for people suffering from kidney disease that helps them prepare for dialysis. By early 2016, he had joined the transplant waitlist and traded his feelings of resentment that his first nephrologist hadn’t cautioned him about his failing kidney function for a sense of empowerment. “I moved from being angry to being proactive and trying to live the best life I could dealing with my disease because it wasn’t going to go away,” says Mahon, who lives in Queens, New York.

By May 2017, Dr. Husain told Mahon he was approaching the time to transition to dialysis. He learned that he could be treated with peritoneal dialysis, a treatment administered at night at home using a catheter attached to his stomach that connected to a machine to draw toxins and fluids out of his system. Although he preferred the at-home nature of the treatment to spending hours at a dialysis center, Mahon nonetheless fought sadness and frustration over how his body would change having a tube connected to him for treatment.

The surgery to implant the tubing went well, and Mahon’s nurses taught him how to connect and disconnect from the machine. On the surface, everything was going well. But internally, Mahon was exhausted and struggling with the process of dialysis, which took from 11 pm at night until about 5:30 am, every night. “Mentally, I went through a lot of changes,” he says. “I didn’t want to burden anyone else with what I was going through, so I was very stoic.”

Then, at one of his medical appointments just a month after starting dialysis, Mahon encountered a nurse seeking candidates to be transplanted at NYU Langone Hospital. He eagerly signed up and was accepted into the transplant program in July 2017. It took two years, but on September 13, 2019, Mahon received his kidney transplant.

Mahon works for New York City Transit, maintaining the contact rail system in the subway and the elevated tracks that provide power to the train motors. Two of his coworkers have also experienced dialysis and transplant, and they shared their stories with him, answering questions and encouraging him. They told him that life improves post-transplant, and Mahon now understands what they mean.

Having healthy kidney function has been nothing short of life-changing, says Mahon, who credits his transplant with giving him a new outlook on life. “It’s like night and day,” says Mahon. “I was appreciative to be able to do peritoneal dialysis at home. But once I got my transplant, I was no longer tied to having to use a machine each night and having to bring up 15 pounds of solution and do the exchange and do daily maintenance on the machine.”

To help him track what medications he needs to take and when, Mahon relies on CareDx’s AlloCare^® app. The gamification makes compliance easy by giving him a running tally of how good a job he’s doing at taking his meds and drinking enough water; three liters is a goal. “That’s my daily go-to app,” he says. “I couldn’t imagine not using it.”

Ebert Mahon’s Tips:

• Have your medical records ready and be proactive in your care, actively working alongside your doctor.
• Find a doctor you trust and who will be open and honest with you.
• Seek out different online kidney patient sites that can provide support: Mahon likes the American Association of Kidney Patients (www.aakp.org) among others.