Sunday, September 25, 2016

Walk for PKD: Northern Indiana, Nanaimo, BC; Living with PKD: HS Cheerleader in Ohio; Gift of Life: Walworth, Mississippi, Fayetteville

Walk for PKD

From The Michigan City News-Dispatch, By RICHARD CHAMBERS

Walking for PKD

The PKD Foundation's Northern Indiana chapter was ready to hold its 10th annual Walk for PKD event even in the rain, but there was no need to worry Saturday. The weather cleared in the morning hours, just in time for participants to undertake a cool walk in Creek Ridge County Park.

Seven teams, with names including Walk with Grace and Krazy Kidneys, came out to raise money for research to find a cure for polycystic kidney disease, a genetic disorder that has a 50 percent chance of occurring in a patient's child.

With PKD, cysts form in the kidneys and inhibit their function. The patient will eventually die without dialysis or a kidney transplant.

Walk coordinator Debra Wheeland, who has PKD, said some treatments are in progress, but no good treatment exists at the moment. She prays for a cure, she said, so her two children will not be severely affected if they find they have it.

The foundation does hundreds of walks across the country, and the walk is the biggest fundraiser, she said.

Walk founder Laura Moyer, who has PKD and has 15 immediate family members with the disease, said, not including Saturday's walk, the Northern Indiana chapter has raised more than $100,000 for PKD research.

She said she would love to see a cure. Her grandfather died of the disease in 1940, and her mother died of PKD later.

She had a transplant, but this treatment means she still must take 28 medications each day so her body does not reject the new kidney.

Jeff Wiesemann, who has PKD and had a transplant 12 and a half years ago, has been coming to the walk since it started and comes with dozens of family members. His brother will have a transplant in about a month, and both of them have children with PKD.

Wiesemann said the walk helps by raising awareness and showing patients other people also suffer from the disease.

"There's other people like you," he said to them at the event. "PKD affects millions of people. It's good to see communities that come together and show awareness of this disease."

Sandy Krepel came to the walk for the first time Saturday. Two of her four siblings have PKD, but she does not. Because she does not have it, her children could not get it either.

"I was lucky," she said. [Read more]




From Nanaimo News Bulletin, British Columbia Canada, by Karl Yu


Hailey-Ann Grant, 2, will be among those benefiting from money raised by the Kidney Foundation of Canada’s Kidney Walk Sunday (Sept. 25) at Maffeo Sutton Park. Grant suffers from polycystic kidney disease and will need a kidney transplant. Registration begins at 9 a.m. and the walk begins at 10 a.m. - KARL YU/The News Bulletin 

Hailey-Ann Grant, 2, will be among those benefiting from money raised by the Kidney Foundation of Canada’s Kidney Walk Sunday (Sept. 25) at Maffeo Sutton Park. Grant suffers from polycystic kidney disease and will need a kidney transplant. Registration begins at 9 a.m. and the walk begins at 10 a.m.
— Image Credit: KARL YU/The News Bulletin


A 2.5-kilometre walk around Maffeo Sutton Park Sunday (Sept. 25) could help two-year-old Hailey-Ann Grant with a kidney transplant.

The Kidney Foundation of Canada holds its Kidney Walk for Nanaimo at the waterfront park Sunday, with proceeds going toward foundation services, programs and research.

Hailey-Ann suffers from severe polycystic kidney disease, something that her mother, Kristina, said was diagnosed when she was 21 weeks pregnant. It’s considered a miracle that she’s made it past the age of one without needing a transplant, Kristina Grant said.

She said Hailey-Ann’s kidneys are 13.5 centimetres long, when they should be five cm.

“She takes blood pressure medication every single day in an attempt to control her blood pressure because, one thing I found out through the Kidney Foundation is that, your blood pressure is controlled by your kidneys, so the bigger your kidneys, the more hormone it releases and the higher your blood pressure.”

Hailey-Ann also takes inhalers daily to assist her lungs in fighting off any infections, but despite that, Grant said her daughter has the perfect attitude.

“She is your typical kid with her alter ego Super Hailey,” said Grant. “If you hand her her medication, she takes it. It’s just such a part of her life. She doesn’t fight her inhaler ... She’s learned to give herself her blood pressure medication. Going to the hospital isn’t a scary thing to her, it’s just a fact of life.”

Hailey-Ann will require a transplant and the only question is when. Grant said the goal is when Hailey-Ann is a 15-year-old because her cousins, the best candidates for a kidney match, will be over the age of 18 and legally able to donate.

The foundation has set a target of $20,000 for Nanaimo and as of Wednesday afternoon, more than $15,000 had been raised. Grant’s team, Hailey’s Comets, were one of the top fundraising teams with $6,305 raised.

In all, the foundation hopes to raise $450,000 in the B.C. and Yukon region, but only $117,217 had been raised as of Wednesday afternoon.

Eighty per-cent of all transplants in the region are kidneys, said the foundation. One in 10 Canadians and one in 10 British Columbians suffer from kidney disease, according to the foundation.

Kidney Walk registration begins at 9 a.m. Sunday and the walk will begin at 10 a.m. For more information on the event or to make a donation, please go to www.kidney.ca. 





Living with PKD

From WCMH, Channel 4, NBC Affiliate, Columbus, Ohio, By Andrey Hasson


Sara Dietrich is a sophomore cheerleader at Delaware Hayes High School, and she battles Polycystic Kidney Disease (PKD).

PKD is a life threatening genetic disease that has no cure or treatment. Liquid filled cysts form on her kidneys, decreasing the function. PKD causes constant numbing pain that requires the need for regular blood and urine testing to keep track of her levels, but Sara does not let it dampen her spirit! She practices her tumbling and varsity jumps like healthy cheerleaders, but some days, she simply can not practice.

“Some days are definitely worse than others, some days are better, and on the bad days, they’re pretty bad,” said Sara. “Some days it hurts so much that I don’t want to go to school.”

At the age of 12, Sara was diagnosed with PKD, the fourth leading cause of kidney failure in the United States.

“When she was first diagnosed, we literally had no idea what it was or who to turn to or anything,” said her mother Autumn Dietrich. She added, “Sara was placed on a special diet…her activities were restricted…it was almost mind-blowing in a way.”

But Sara remains positive as she gives 110% every day.

“I want to be able to do a lot of the things that everyone else can…a lot of people say they don’t even know about it until I tell them,” Sara said.

Once she reaches stage 4 out of 5 for kidney failure, she will be placed on dialysis and then will need a kidney transplant, but her family does not like to dwell on that statistic.

“She’s not going to be able to participate in anything that she’s passionate about, so I think it’s so important to us just to allow her to go,” said Autumn.

“I just try not to think about it, and I think of the positives,” said Sara.

The Central Ohio Chapter of the PKD Foundation’s Annual Walk for PKD will be on October 15, 2016 at Wolfe Park.




Gift of Life

From GazettExtra, Walworth County, Wisconsin, by Anna Marie Lux

A daughter's love: Woman prepares to give mother a kidney



Karen Woodland always knew she would donate a kidney to her mom.

For 35 years, her mother, Janice Smith, has had polycystic kidney disease, which slowly caused her kidneys to fail.

“My mom was first diagnosed when I was 10,” Woodland said. “My grandfather also had the hereditary disease.”

Fortunately, Woodland does not have the illness. She also passed the compatibility tests and will donate a kidney to her mother, who depends on dialysis to stay alive.

On Oct. 17, Woodland will travel to Oregon, where 67-year-old Smith lives.

Woodland will be in a Portland hospital two days for the surgery and will stay in the area nine days after surgery so doctors can monitor her healing.

The life-giving event will be over quickly, but Woodland has been preparing for it much of her adult life.

During her training as a clinical dietician, she paid close attention to transplant and kidney patients so she could advise her mom.

Today, Woodland specializes in nutrition therapy in private practice at Full Circle Nutrition, Janesville, where she also tests for food sensitivities.

She has a second job working with dialysis patients.

“I took the job two years ago because I wanted to put myself in a position to learn more,” Woodland said. “I wanted to be in a better place to help Mom make decisions.”

Unfortunately, few who need kidneys have someone like Woodland to help them.

As of early September, more than 1,800 people are waiting for kidneys in Wisconsin, according to the United Network for Organ Sharing. [Read more]




From Daily Journal, Mississippi, by William Moore

The spirit of giving: Residents share more than kinship after kidney donation

Adam Robison | Buy at photos.djournal.com Jan Smith, left, recently started her 15th year with a kidney donated by her nephew, Mike Jackson.


Jan Smith and Mike Jackson are closer than most aunts and nephews.

They share more than a kinship; they share a kidney.

Earlier this month, the Cedar Hill residents celebrated the 14th anniversary of Mike donating his left kidney to Jan.

Jan had dealt with polycystic kidney disease for decades when doctors told her in late 2001 that her two damaged kidneys were not doing enough, she would need a new kidney.

“I never hesitated,” Mike said. “As soon as I heard, I called her up and said I was going to give her a kidney.”

Jan was 15 when her big sister gave birth to Mike. She was his first babysitter. When Jan and her husband were not blessed with children, Mike and his sister filled that role.

“They lived in Tupelo at the time, so going to visit them in Tupelo was a treat,” Mike said.

“My husband and I were glad to have them around,” Jan said. “We went camping. We would go to the zoo. We took them to the movies.”

When Mike’s mother and Jan’s sister died in 1994, the two became even closer. So it was not a surprise to anyone that Mike took the initiative to see if his kidney was a match.

At the time, Mike was 33 and worked as a mason laying brick and blocks. While he was in excellent physical shape, doctors at the University of Alabama Birmingham medical center wanted to know more. So in June 2002, he underwent three full days of tests.

“It was head to toe, inside and out. They poked and prodded and took samples,” Mike said. “They wanted to know what I did for work, what I ate and how I slept. They even watched me sleep at night. I was under 24-hour supervision.”

When the report came back, they were not only a match, but the score was about the same as twins.

“Somehow he knew that we would be a match. He never doubted it,” Jan said.

Following the surgery on Sept. 10, 2002, Mike was off work for two months as his body tried to adjust to major surgery. Always active, he admitted that he climbed on the riding mower after four weeks to cut the grass. [Read more]




From Fayetteville Observer, North Carolina, By Rodger Mullen

Kidney donor's selfless act honored

Kidney donor's selfless act honored



Though they both worked at the Shearon Harris nuclear power plant, Lisa Johnson didn't know Kay Capps all that well.

But she cared enough to make a life-changing sacrifice.

In December, Johnson, a former Hope Mills resident and 1982 South View High School graduate, donated a kidney to her co-worker.

For that, Johnson was honored with the James B. Duke Award, presented annually to Duke Energy employees.

The award, which Duke describes as the "highest honor for employees who use their passion to make an extraordinary impact on the company and our communities," was presented Aug. 30.

"Johnson's selflessness and love allowed her co-worker to begin 2016 with a new kidney and a fresh start on life," Duke said in presenting the award.

Johnson, 52, is a nuclear maintenance technician at the plant, located in New Hill. She has worked there about 10 years.

Although Johnson and Capps were usually on different shifts, they occasionally worked together. When Capps wasn't at work one night, Johnson asked about her.

Johnson found out through another co-worker that Capps had kidney disease and would have to go on dialysis if she didn't have a transplant.

Capps, who works in radiation control at the plant, has polycystic kidney disease, or PKD, a hereditary condition.

"Your kidneys basically start growing cysts," Capps said. "They keep growing cysts until you either have to go on dialysis or get a kidney transplant. There's treatment but no cure."

Capps, 57, said her father, as well as many other family members, have the condition.

The PKD had progressed to the point where Capps had to go through orientation in anticipation of starting dialysis.

But shortly before that would have happened, Johnson was tested and found to be a donor match.

Johnson said donating a kidney was something she felt compelled to do.

"It was a calling," she said. "I felt God spoke to me and said this is something I was supposed to do."

The surgery was performed the first week of December. Johnson only had to spend a little more than a day in the hospital, although she had to miss about three months of work.

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