From Chicago Tribune, by Dan Shalin Pioneer Press
Like many people who have gone through a major medical procedure, Evanston resident David Simmons' recovery from a 2003 kidney transplant included a series of milestones. Among them were getting out of the hospital, becoming pain free and getting back to work.
For the then-49-year-old Simmons, who received the kidney from his wife Maureen McGrath, one of the most significant moments arrived when he was able to resume his active lifestyle, which he said took six to eight months.
Simmons, whose health issues stemmed from polycystic kidney disease, had been a long-distance bike rider, participating in events in which he rode 200 miles in a day. He even cycled across the country in the late 1980s.
"Absolutely (getting active again) was a milestone," said Simmons, who did have a few rejection episodes during his recovery. "One of the things that was so important to me was if I would be able to pursue my active lifestyle, which included cycling and skiing at that time. I wanted to be able to continue doing what I did before."
Thirteen years later, Simmons said he continues to ride four or five days a week, often with a group along Sheridan Road. During a big week, he can do up to 300 miles.
Since 2005, Simmons also has been a regular competitor in the World Transplant Summer Games and the Donate Life Transplant Games of America, both biennial Olympic-style gatherings of transplant recipients competing in numerous age-group events. The World Games date back to 1978, while the U.S. Games began in 1990.
Simmons has competed in cycling, and formerly swimming, at the World Games in London, Ontario, Canada (2005), Gold Coast, Australia (2009) and Durban, South Africa (2013) and been a participant in five U.S. Games, including earlier this month (Friday, June 10, to Wednesday, June 15) in Cleveland.
In Ohio, as one of 53 athletes on Team Illinois, Simmons earned silver medals in two age-group cycling events, the 5K Time Trial and 20K Road Race. Simmons, 62, now has won six medals, all at the U.S. Games: one gold, three silver and two bronze.
"There are 52-year-olds who are not as active as David. He doesn't look his age and I know how passionate and how competitive he is about cycling," said JP Marzano, the Team Illinois captain and a three-time kidney transplant recipient.
But the Transplant Games are about so much more than competing and earning medals. The U.S. Games are billed as a celebration of the lifesaving gifts of transplantation. Participation in the games was open to not just donor recipients, but living donors. Promoting organ donation awareness also is an important goal of the event. [Read more]
From Huffington Post
A toddler who looked eight months’ pregnant because of a rare disease has been saved thanks to her dad, who donated his kidney.
Maddy Rybkin, now two, was born with a condition called Polycystic Kidney Disease (PKD), which meant cysts grew on her kidneys causing her stomach to look enlarged.
Although Maddy’s condition was managed early on, when she reached 18 months old her parents, Paul Rybkin, 38, and Karen Rodas, 38, were told she urgently needed a kidney transplant.
Luckily, her dad was identified as a donor and, following a life-saving operation in January 2016, she has recovered well.
“Any father would have done what I did, donating my kidney to Maddy,” Rybkin said. “It’s part of being a parent.
“Now we are on a high and can watch Maddy grow up as a happy and healthy little girl.”
Maddy’s parents, from New Jersey in the US, are both carriers of the recessive gene for PKD - a genetic condition that leads to the deterioration of kidney and liver function.
The couple found out they carried the recessive gene when Rodas, who is also mum to Jackson, nine, from a previous relationship, and one-year-old Penelope with Rybkin, - fell pregnant with their first child together, Nathaniel.
Rodas carried Nathaniel until full-term, but he died after just 36 hours.
“During my pregnancy with Nathaniel, we discovered we both carried the recessive gene PKD, meaning the chances of any of our babies surviving, if they were born with it, was very low,” Rodas said.
“He didn’t stand a chance. Just 36 hours after his first cry brought him to life on 4 August 2012, he was gone.”
Medics warned the couple if they tried for another baby, he or she would have a 25% chance of carrying the condition, too.
But Rodas and Rybkin didn’t want to let go of their dream of having a big family.
“When I fell pregnant again, we were both over the moon,” Rodas explained.
“Then, at our 20-week scan, doctors found Maddy’s kidneys were enlarged - a sure-sign of PKD, just like Nathaniel. My heart sank.
“I was determined we didn’t lose our baby to the deadly disease again.” [Read more]
Jumping off of a 15-story ledge is scary, but is it scarier than finding out you have a chronic kidney disease?
On Saturday, the National Kidney Foundation of Maryland will host its 7th Annual Rappel for Kidney Health event. Participants will jump off of a 15-story ledge at the Hyatt Regency in Baltimore to raise funds and awareness about the effects of kidney issues.
According to the National Kidney Foundation of Maryland, more than 26 million Americans have chronic kidney diseases, making it the ninth leading cause of death in the United States. Most people don't know they're at risk for kidney disease until the condition has progressed.
This was the case for Potomac Station resident Courtney Prosser Alexander, who has a strong family history of Polycystic Kidney Disease with her mother, uncle and sister all being diagnosed.
In her mid-20s, Alexander went to her doctor’s office to find out if she was a match to donate a kidney to her mother. Instead, Alexander discovered cysts covering both of her own kidneys.
“I was definitely shocked when I was diagnosed but watching my sister and mother battle the disease was comforting because they had gone through a lot and were resilient,” Alexander said.
Alexander’s older sister went through an unusual double kidney and liver transplant because of PKD which transformed her life for the better. Their mother, unfortunately, died on dialysis seven years ago, as she was ready to be put on the donor list.
“Once you get a transplant, the disease is cured,” Alexander said. “There is an end in sight but it’s a matter of how long that will take.”
The National Kidney Foundation of Maryland has raised $26,039 so far in its rappelling event this year and has a goal of $140,000. Alexander’s team of four has a goal of $4,000 and has raised $1,300 so far. The organization will use these funds for research, awareness and support for the patients and families affected by kidney disease.
Alexander recalls her time last year waiting on the edge of the Hyatt in Baltimore in the scorching sun as more than nerve-wracking.
“The hardest part is stepping over the edge and trusting that you’ll be OK,” Alexander said, who will rappel again this year. “It’s an opportunity to do something fun to raise awareness and also to show my children that there is nothing to be afraid of.” [Read more]
