From WCVB, Channel 5 ABC Affiliate, Boston
Sunday September 11, 2016: Boston Walk for PKD
This year, Elizabeth Caruso will join thousands nationwide to come together and walk in support of those affected by PKD, one of the most common, life-threatening genetic kidney diseases. It affects hundreds of thousands in America and millions worldwide, who are in urgent need of treatments and a cure. PKD is the fourth leading cause of kidney failure.
The 2016 Boston Walk for PKD, sponsored by exclusive television partner WCVB, is planned for Sept. 11 at Artesani Park (1255 Soldier’s Field Road, Boston) with PKD patients, their families, friends and members of the PKD medical community fundraising and walking together to unite to fight and end PKD. WCVB'S Kathy Curran returns to emcee. Registration is at 9 a.m., with the Penny Kids Dash beginning at 10 a.m. and the Walk beginning at 10:30 a.m.
This is Elizabeth’s sixth time participating in the Walk for PKD, and her fourth time running the walker registration. She walks in support of her sisters, Ashley and Samantha, whose diagnoses came as a surprise in the past few years until the family discovered Elizabeth’s grandmother and father both have the disease, too. Joining her this year will be her husband, her parents, grandparents, aunts, uncles and cousins.
Elizabeth walks to raise awareness and funds in hopes that there will be a cure before her sisters need kidney transplants. She believes that walking for PKD makes a difference in the fight to end the disease because every year when she talks about the Walk or hosts a fundraiser, there are more and more people learning about PKD for the very first time.
The annual Walk for PKD is the signature fundraising and public awareness event for the PKD Foundation and is the largest gathering of PKD patients, family, friends and supporters; more than 11,000 strong. The Walk for PKD is hosted in more than 50 cities nationwide. Since 2000, the Walk for PKD has raised nearly $24 million. This money raised supports the PKD Foundation’s efforts to fund research to find treatments and a cure, and to provide information and support to people affected by PKD.
Register for the Boston Walk for PKD at walkforpkd.org/boston.
About PKD
PKD patients in the U.S. are in urgent need of treatments and a cure. PKD causes cysts to grow in the kidneys, eventually leading to kidney failure. Once a person has kidney failure, dialysis or a transplant are the only options to treat the damage the disease has caused. Parents with the disease have a 50 percent chance of passing it on to each of their children. Approximately 10 percent of the people diagnosed with PKD have no family history of the disease, with PKD developing as a spontaneous (new) mutation. Once they have it, they have a 50 percent chance of passing it on to each of their children. A relatively rare form of PKD, autosomal recessive polycystic kidney disease (ARPKD), affects approximately 1 in 20,000 children, and often causes death in the first month of life.
About the PKD Foundation
The PKD Foundation is the only organization in the U.S. solely dedicated to finding treatments and a cure for PKD to improve the lives of those it affects. We do this through promoting research, education, advocacy, support and awareness. Our goal is that one day no one will suffer the full effects of PKD. For more information about PKD and the PKD Foundation, visit pkdcure.org or call 1.800.PKD.CURE (753.2873).
Gift of Life
Westminster College has been the source of countless stories where students and alumni have performed selfless acts of service to make a difference in the lives of other people. But perhaps the most remarkable of all stories is the sacrifice Tom Rigdon, class of 1970, made to save the life of his fraternity brother Rod Mohler, class of 1971.
The two men grew up only a few miles apart in Oklahoma, with Rigdon, 68, from Newkirk and Mohler, 67, from Ponca City. Rigdon and Mohler both enrolled at Westminster and become Sigma Alpha Epsilon fraternity brothers. Over the years they became close friends, getting together on occasion while life continued in their respective small towns. Rigdon became an attorney, and Mohler operated his own construction business.
Everything was going well for the two men until Mohler was diagnosed with polycystic kidney disease. His physician told him if he had to have kidney disease, this was the most slow-growing and would give him time to try to deal with the illness. After several years, Mohler finally began dialysis on his birthday, May 13, 2013. Since he had known for three years his kidneys were failing, Mohler had already placed himself on a donor list.
He spent the next two years on dialysis with no possible donors in the picture. His sister was rejected because of her small size and some kidney problems of her own. An attorney friend from Ponca City came forward to volunteer but was rejected because of his high blood pressure.
Rigdon checked on Mohler regularly to see how he was doing. In early 2015, the two men and Tom's wife, Mary, a William Woods graduate who had known Mohler for years, attended a wedding reception together and had an opportunity to visit in depth. Two days later, Rigdon called Mohler and said he was willing to donate a kidney if the organ was found to be a match.
The tests were conducted, and Rigdon's kidney was a match. On March 9, 2015, the surgery took place and was a success.
Today, both men are doing well. Mohler has returned to construction work remodeling houses, and Rigdon walks to his busy law office every morning.
"Tom Rigdon went above and beyond what any friend could ever be expected to do," Mohler said. "Words can never express how grateful I am that he has given me my life back."
Five years ago Tuesday, Chris Allsup of Longmont donated a kidney to his friend, Arron Silva of Los Angeles.
Allsup, 40, said the two met in college and kept in touch afterward, but when Silva came to Colorado in 2010 for Allsup's sister's wedding, the family knew something was off.
"I didn't know he was in such bad shape," Allsup said. "Both kidneys were in failure and he was doing dialysis all the time. ... When I saw him, he was just yellow. The dialysis wasn't cleaning everything out that it needed to, and he'd put on a lot of weight because there was a lot of foods he couldn't eat like greens and stuff like that because they weren't good for the kidneys."
Silva has a genetic disorder called polycystic kidney disease, in which cysts grow on the kidneys, eventually prohibiting them from properly filtering blood.
While the disorder is genetic, it strikes when the patient is an adult, usually in the 20s or 30s, Silva said.
Silva was diagnosed and placed on the list of people in Los Angeles County in need of a kidney. He was told the wait time for a kidney would be between four and seven years.
"I was on the list for one year without going on dialysis and then another year and a half on dialysis," said Silva, whose mother also had the disorder and died from complications associated with the cysts. "When I came up for Chris' sister's wedding, I had to ship up a bunch of my fluid because I was doing home dialysis."
When Allsup heard about Silva's disorder, he offered to donate a kidney, but Silva didn't think much of it initially.
"I had lots of friends — you know, 'I'll give you a kidney, I'll give you a kidney,' and they wouldn't really follow through. And I get it, there's all kinds of reasons why," Silva said. "So at the wedding he said, 'I'll give you my kidney,' but I didn't have the number (for prospective donors) with me because I figured if someone really wanted to they would push for it."
But Allsup was serious. He called Silva once he was back home in California and asked again for the number. From there, Silva said, the University of California Los Angeles hospital system staff corresponded with Allsup but kept Silva largely out of the loop.
"Someone can call and (the donor) sets it up," Silva said. "And usually when that is happening, they are not telling me the recipient any of what's going on. ... I told him, 'No worries if he needs to back out. I get it,' and he'd just call and say, 'I did another test today' and I would say 'OK, cool.'"
Allsup said from his perspective, it all happened very quickly.
"I had to bug him a couple times to get that (donor) number and I did and went down and got tested and it came back I was a match," Allsup said. "I did some testing out here and then I flew out to UCLA to get more testing and when I finished that, it was all very sudden. It was like all systems go at that point."
On July 19, 2011, surgeons transplanted Allsup's kidney in to Silva.
Silva's body had a minor rejection of the kidney one week later, the day they were supposed to have a going away dinner for Allsup. But it was only minor and things since then have largely been smooth sailing, Silva said.
Silva still has his two kidneys, which are roughly the size of footballs because of all the cysts. Occasionally a cyst will burst, causing him severe pain and he has to go back to see his kidney specialist. One of those times he agreed to take part in research that was using ultrasound technology to get a look at internal organs. When he saw his two non-functioning kidneys and Allsup's functioning kidney inside him via the ultrasound, Silva said he was shocked.
"It was pretty scary. I had never seen it myself. There are just all these little balls all over my kidneys," Silva said. "And the doctor showed me how my native kidneys had hardly any fluids going through them and he showed me Chris's transplanted kidney full-on moving fluids. It's amazing."
Allsup said the two joke about the transplant all the time, with Allsup saying Silva owes him big time.
"I don't tell everybody about it," Allsup said. "It just seemed like the right thing to do."
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