Sunday, August 9, 2015

Do You Know PKD?; I Kidney: A Novel; Let the Games & Walking Begin; Gift of Life

Do You Know PKD?

From PKD Foundation

Make a Gift in Memory of Greg Spira

Greg Spira



Among Greg's many accomplishments were the creation of the Internet Baseball Awards, a widely-recognized readers choice award, and his role as co-founder of Frequent Business Traveler magazine, where he helped develop the magazine's GlobeRunner Awards program.

Greg experienced a particularly early onset of polycystic kidney disease (PKD) and passed away at the age of 44.

Thank you

Do you know PKD? Watch our video to learn more about this disease.




From Broadway World

Chris Six Pens I, KIDNEY: A NOVEL

Polycystic kidney disease, or PKD, affects some twelve million people worldwide. Yet it's relatively unknown, getting a fraction of the attention given to high-profile, "sexy" diseases, and many suffer with the symptoms years before diagnosis. I, Kidney, the debut novel from transplant recipient Chris Six, aims to change this scenario.

Against a picture-postcard New England backdrop, the Zizzi familyathlete dad, vivacious mom, two bright kidscopes with physical and emotional setbacks. Younger son Joe narrates the story, chronicling his mother's death, the derailing of his father's sports career, his brother's struggles with mental illness, and his own wry attempts to make sense of life.

And then Joe finds out he has PKD.

The second half of the story takes readers through the early testing and diagnostic stages, nutritional and surgical preparations for dialysis, treatment processes and side effects, complementary therapies, and a wide range of positive and negative encounters with doctors, nurses, and technicians, all seasoned with equal amounts of hope, doubt, and even humor as to whether a viable organ will eventually appear. A directory of kidney and mental health-related resources is included as an appendix.

Author Chris Six, who founded the Chris Six Group imprint in 2013, meant to have the novel out sometime that year, but events kept getting in the wayincluding welcome ones such as a kidney transplant after nearly four years on the waiting list. "The bulk of the kidney-related incidents in the story actually happened to me or to people I knew in dialysis," says Six. "We're all family in the treatment center.

"A great deal of writing this book was about getting the practical info out there. When I was first diagnosed with PKD, I had no idea what lay in store for me. I could have used a book like thisand many of the professionals who were involved in my treatment could still learn from it."

I, Kidney is available from Amazon paper and Kindle, and Barnes & Noble.com.

The Chris Six Group is dedicated to "literature from left field"thought-provoking fiction in a variety of genres. Releases include the fantasy The Basket of Seeds by Ska St. Julian, Raanan Geberer's short story collection Moish and the Mob, and Kew Stapleton's political/sports satire New York Brain.

Book Details:
"I, Kidney: A Novel"
By Chris Six
Publisher: The Chris Six Group
ISBN: 978-0989918244
ASIN: B00QMRHDW8
Pages: 326
Genre: Literary Fiction, Family Saga

For review copies, author interviews, or more information please contact:

Chris Six
Email: ambi_mo (at) msn.com
Website: http://www.thechrissixgroup.com
Twitter: https://twitter.com/TheChrisSixGrou
Facebook: https://www.facebook.com/TheChrisSixGroup




PKD Fund Raising

From InCumbria, United Kingdom, By Freya Findlay

CARLISLE DAD'S DELIGHT AT BRITISH TRANSPLANT GAMES PERFORMANCE

Ian Blenkinsopp photo

A Carlisle father is planning on doing more events next year after powering through the 800m at the British Transplant Games.

Ian Blenkinsopp, 52, of Cumrew Close, who had a kidney transplant two years ago, had such a great time at the games this year, he is determined to go back. He now wants to compete in more events and has set his sights on badminton, table tennis and the 200m.

The father-of-three was so interested in watching all the other competitors at the games on Sunday at NewcastleGateshead, that it was not until he was called for his race that the nerves hit him.

He said: “The first lap went really well. Halfway through the second lap, I could feel it and I slowed and slowed and slowed. The last 100m was like running through treacle but I was more proud to have been able to do it.”

Mr Blenkinsopp completed the race in four minutes and 20 seconds, a time he was very happy with. At the start of last week, he was struck down by a kidney infection and was not sure whether he would be well enough to compete.

A course of antibiotics managed to sort him out in time.

“By Thursday evening, I knew I was definitely going to go and do it and I’m really glad I did,” he said.

At the games, where children and adults of all ages competed, Mr Blenkinsopp said everyone was very supportive of each other and there was a very friendly atmosphere. He was overwhelmed by the roar of the crowds when he went down to the track for his race.

“They go on about the Commonwealth Games being friendly but they’ve got to go an awful long way to beat the Transplant Games,” he commented.

Mr Blenkinsopp was 18 when he discovered he had inherited polycystic kidney disease from his father.

He gradually began to feel the effects of the disease, with cysts growing both on and in his kidneys.

He was told he needed a double kidney transplant and until that could happen he received peritoneal dialysis.

After two years on the waiting list, Mr Blenkinsopp had a transplant on October 24, 2013. He soon began to notice a difference in his health and had a lot more energy.

A few years ago, completing the 800m would have been a dream but thanks to his transplant, he has made that dream a reality. He is now keen to encourage people to register as organ donors.

He said: “Even just getting the word out to people to try and join the organ donor list and if just one person joins, it’s well worth everything I’ve done.”

Join the register at: www.organdonation.nhs.uk

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The Denver Chapter of The PKD Foundation is having their annual fundraiser walk. We are a non-profit organization with dedicated volunteers who raise money to fund Education & Research to find a cure for Polycystic Kidney Disease. PKD is the most common genetic kidney disease. The learn more about what we do, visit our website at: www.pkdcure.org

http://support.pkdcure.org/site/TR?fr_id=1136&pg=entry




Gift of Life

From Sturgis Journal, Sturgis, Michigan, By Michelle Patrick

Two SHS grads donate kidneys

Pictured from left are Sara Main, Lee Rohr and Heather Hutchinson. Main recently donated her kidney which led to Rohr receiving one. Hutchinson recently donated her kidney to Mike Padgett.

Pictured from left are Sara Main, Lee Rohr and Heather Hutchinson. Main recently donated her kidney which led to Rohr receiving one. Hutchinson recently donated her kidney to Mike Padgett.

A pair of Sturgis High School graduates recently made sacrifices to help improve the lives of others.
Heather Hutchinson and Sara Main donated kidneys within a week of each other recently.
Hutchinson, a 1995 graduate of SHS and current resident of Centreville, donated her kidney to Mike Padgett of Wolcottville, Ind., July 21.

Main, a 1990 SHS grad and current resident of Portage, donated a kidney through a paired donation program July 15, resulting in a kidney for Lee Rohr of Sturgis.
Both Padgett and Rohr had been diagnosed with polycystic kidney disease and were on dialysis.
Rohr, who had been on dialysis for a year, described living on dialysis as a “challenge.”

“You can survive on dialysis, but its hard to live,” he said. “It’s a difficult thing.”
Main, who met the Rohr family through mutual friends, knew she could help.
She recalls watching an episode of the Today Show where one individual donated a kidney and a chain reaction ensued.

For Main, it was about, “just knowing that you could change someone’s life.”
“I did it for Aleese (Rohr’s daughter),” Main said. “I did it for their family. They’re such amazing people.”

In Hutchinson’s case, Padgett is her best friend’s father. Her friend, Amy Niccum, was also diagnosed with polycystic kidney disease. Hutchinson said it was hard to see Padgett going through what he was, knowing that her friend would one day likely go through it as well. A mother of six herself, Hutchinson wanted Niccum and her children to see that there was hope.

“I’m very appreciative of what they’ve done for me,” Padgett said of the Hutchinson family. “I’m happy. She saved my life.”

Rohr was grateful for what Main had done for him as well.
“It’s basically a second chance at life,” he said. “I’m blessed beyond belief. I’m so thankful. What these women have done is so courageous.”

Since the surgery, Rohr has experienced a new-found sense of clarity and ambition. [Read more]




From The News-Gazette, Champaign-Urbana, IL

New lease on life

20150806-210229-pic-366020228.jpg

Keith Pillischafske, body shop manager at Sullivan-Parkhill, is enjoying life more thanks to his wife, Kim, who donated a kidney to her husband in April 2013.

It's more than a seventh-grade crush kind of thing when you donate a kidney.

Kim gave one to her husband, Keith, and now the Pillischafskes are celebrating their 42nd anniversary this week.

Keith and Kim have known each other since seventh grade at Jefferson Middle School. They married at 18, after Keith had a brief relationship with another woman.

Two years ago, Kim donated her kidney to him, though they haven't talked much about it in the community.

Kim is modest, but Keith is very appreciative — living a better life than he knew he could.

"I didn't know how bad I felt until I got the new kidney and felt better," he says.

Keith, 60, has worked at Sullivan-Parkhill for 33 years. A few years ago, doctors thought he was having a heart attack, but then diagnosed it as high blood pressure. He was on seven pills a day for his condition.

Ultimately, the culprit turned out to be polycystic kidney disease. He found out about it in a strange way.

Before marriage, Keith fathered a child with another woman, Kim says.

"Shortly after Sept. 11, he received a call from the birth mother saying that the daughter she gave up for adoption has contacted her," she says.

The young girl, Christine, was diagnosed with polycystic kidney disease around the age of 10. Having been told she was adopted, she wanted to find out if her biological family had this disease.

Keith thought that Christine wanted to meet him because she need a kidney transplant.

"I wanted to give my kidney to her," he says.

But that wasn't it at all. Christine, 44 now, is living in the Chicago suburbs, and still fine without a kidney transplant.

When Keith checked to see if he could be her kidney donor, he found out he too has the disease, Kim says.

"There is no cure. They would monitor his kidney function levels, and we could tell by around 2007 that he was becoming more tired, and just didn't feel good," Kim says.

In 2010, Keith's nephrologist said he should start thinking about dialysis or getting registered on the donor list. But there are more than 90,000 people on the national donor list to get a kidney.

"He just kept getting worse and didn't want to do dialysis if it could be avoided," Kim says.

"A cousin was willing to donate her kidney," Keith says. "But I knew where Kim's kidney had been, and I didn't knew where my cousin's had been," he jokes.

That's when Kim volunteered, and after many tests, the transplant team at Loyola University Medical Center in suburban Chicago found she was a match.

The transplant was scheduled to happen in October 2012, but a medical complication put it off for six months.

On April 11, 2013, the transplant was a success — with a support system of the Pillischafske children, grandchildren, "bonus family" and friends.

"There will always be a long road ahead for him," Kim says.

Keith will be monitored for the rest of his life, and take handfuls of anti-rejection medications.

"It's an ongoing thing. But frankly, I didn't know how sick I was until I got the transplant, and how much better I feel," he says.

Says Kim: "I sleep much better at night since the transplant." [Read more]

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