Kidney recipient plans kayak trip to Cape May
AL ZAGOFSKY/SPECIAL TO THE TIMES NEWS Kidney transplant recipient Larry Rafes is getting ready for the adventure of a lifetime, a 200-mile kayaking trip from the Lehigh River to the Atlantic Ocean to celebrate the miracle of his restored health and to promote organ donor awareness.
Life is good for Larry Rafes, 60, of the Lehigh River hamlet of Laurys Station. With his new kidney, Rafes no longer needs to crawl up the stairs to his house, au contraire, he is getting ready for the adventure of a lifetime, a 200-mile kayaking trip from the Lehigh River to the Atlantic Ocean.
Rafes has launched a website, make-a-splash.org, to promote his organ donor awareness journey. He invites fellow paddlers to join him, like-minded people to register as an organ donor, and followers of the website to learn more about organ donation - what Rafes is calling "Make a Splash".
His original plan was to leave from Laurys Station on Aug. 17 and travel 20 miles a day for 10 days, down the Lehigh and Delaware rivers and across Delaware Bay to the Atlantic Ocean at Cape May, N.J.. But he decided to launch the trip from the more accessible Canal Park in Allentown. At this location, he is inviting everyone who has been touched by a transplant to join him on a free flatwater paddle to Sand Island in Bethlehem.
Aug. 17 is an important date to Rafes. That's the date in 1955, when his sister was born. It was also on that date in 1980, when his cousin's son was born. It was also on that date in 1981, his daughter was born. Here's the tie in.
Rafes fell in love with rivers and mountains growing up in the Delaware Water Gap.
"In the 1950s, a proposed Tocks Island Dam would've dammed the Delaware River and flooded all the outlying areas," he began. "A lot of people fought it, including my cousin, Dr. Barry Allen."
On Aug. 17, 1955, a hurricane triggered flooding of the Delaware River led to the proposal to construct the Tocks Island Dam. On Aug. 17, 1980, Congress voted to deauthorize the dam if there were no challenges for one year. On Aug. 17, 1981, the Tocks Island Dam was permanently deauthorized.
Although the dam was never built, 72,000 acres were acquired, which became the Delaware Water Gap National Recreation Area.
When he was 10 years old, Rafes was building up his body with a spring-loaded muscle builder. He slipped one end over a foot and pumped his bicep as he watched television.
"I was stretching it towards my face when I came off my foot and it hit me in the nose," he said.
A doctor came and saw he had a deviated septum.
"My dad held my head, the doctor placed the rods up my nose, and they straightened it out."
The procedure was good, but not good enough.
For the next 50 years, he suffered with recurrent sinus infections which were treated with antibiotics. A doctor recommended surgery in 2000.
"When I went for that surgery, the blood work that came back indicated that I had kidney disease," Rafes said. "The kidney disease may have been caused by my immune system getting out of whack from too many antibiotics, and my immune system was destroying the cells in my kidneys."
Rafes hadn't been aware of his kidney problem.
"When I look back, I was having some symptoms. I remember when going for a walk, a number of times my hands got puffy, and my legs started to swell."
Additional blood tests and a biopsy provided further confirmation.
"They said my cells are being destroyed."
Both kidneys were in a gradual decline. He was prescribed a combination of steroids and various blood pressure medications.
"At one point, I was taking 15 medications as many as three times a day," he said. "They weren't working."
As the years passed, Rafes' red blood cell count dropped.
"I was incredibly anemic. It was a chore for me to walk up a flight of steps."
Rafes applied to be placed on the transplant list of the University of Pennsylvania Hospital in Philadelphia, the center covered by his insurance company. He was told that he would soon need to go on dialysis.
Wanting to stave off dialysis, Rafes began an organic, whole food vegetarian diet.
"It was easier for my body to digest. I lost a lot of weight. Because I wasn't eating meats, it took the pressure off my kidneys. It kept me off dialysis for almost a year. Changing my diet was my idea, not my doctor's."
By 2009, he was on the transplant list for six months and his kidney function was so poor that dialysis could no longer be avoided.
"I was on dialysis for one year, three times a week for four hours each session.
"Once on dialysis, I was switched to Medicare because my health company couldn't handle the cost."
He wanted to join the local Lehigh Valley transplant program rather than the University of Pennsylvania Hospital's program in Philadelphia. Medicare allowed Rafes his choice of programs. He transferred to the Lehigh Valley transplant program.
"I was on the University of Pennsylvania's transplant program for a year and never got a phone call other than to say that my annual checkup was coming up," he said. "Within a month of getting on the list at Lehigh Valley, I got my first phone call and they told me that I am on the backup waiting list. If a donated kidney is not appropriate for someone who is supposed to get it, I can be called to receive it.
"I was on pins and needles wondering if I would be getting a transplant the next day. That happened several times-with the kidney going to the intended patient."
On Sunday, Dec. 19, 2010, Rafes' third phone, he was told, "You are the intended patient."
Rafes was one of many patients that were called for various organ transplants.
"I waited at the hospital for two days until all the other patients were ready to go. They harvested the organs and on Dec. 21, I received my transplant. As the operation began, it was the winter solstice, and there was a lunar eclipse. I missed both," he joked.
Rafes now has three kidneys, the transplant plus his two original kidneys.
"There's no sense in adding additional stress to the body if the kidneys that remain are not going to cause any damage. Most of the time now they leave them in," he explained.
"Within 24 hours of the surgery, I was doing laps around the recovery floor. I walked a quarter-mile. I was amazed that I could do that after major surgery.
"It's remarkable how my energy and my entire health has been restored," he said. "A year and a half later, I paddled a kayak across Mauch Chunk Lake."
Rafes, who had joined the Lehigh River Sojourn every year for the 16 years that it has run, was chatting over coffee with Jerry McAward, safety director of the Lehigh River Sojourn.
"He asked me about my transplant," Rafes said. "I knew what he meant. How am I going to give back?"
Based upon their common love of rivers, they came up with the idea of Rafes making a personal sojourn to celebrate the miracle of his restored health and to promote organ donor awareness.
For additional information, see: www.make-a-splash.org.