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.

Sunday, September 18, 2016

Walk for PKD: Boston, Owens Sound, Ottawa Valley, Peoria; FDA:BioMarker: Total Kidney Volume; Its not a Baby Bump

Walk for PKD

From MSN Wakeup Call Video

Wake up call: Walk for PKD

Wake up call from Boston, MA on the Charles River




From Owens Sound Sun Times, Ontario, Canada, By Denis Langlois

Locals walk to support kidney disease research

Tom Stobbe, left, and his son Sean Stobbe, take part in Saturday's Kidney Walk at Harrison Park in Owen Sound. (DENIS LANGLOIS/THE SUN TIMES)

Sean Stobbe was diagnosed late last year with polycystic kidney disease.

And while the way he found out was a bit of a surprise – his blood was being tested because he was experiencing some unrelated foot pain – his diagnosis was not completely unexpected.

“I was basically prepared that I was going to get it eventually,” the Owen Sound resident said in an interview Saturday morning during a Kidney Walk in Owen Sound, which raised $3,665 for the Kidney Foundation of Canada.

Stobbe, 27, is the fourth generation member of his family to be diagnosed with polycystic kidney disease, a genetic disorder that causes clusters of cysts to develop within the kidneys.

As a result, he is well aware of what will happen next – dialysis and, inevitably, a kidney transplant.

“It could be next year. It could be in five years. It's hard to say,” he said of dialysis.

Stobbe was participating in the Owen Sound walk with his father Tom Stobbe, who was diagnosed with polycystic kidney disease while in his 30s and received a transplant in his 40s, as well as his sister Lisa Potter and her husband Max.

Stobbe's grandmother and uncle also had the disease, as did a great-grandparent.

Stobbe said he is now on medication for his condition, but experiences symptoms like anaemia, high blood pressure and fatigue.

Tom Stobbe said once his son's creatinine levels reach a certain level, he will have to begin dialysis, which he will be able to do at his home.

It was the elder Stobbe that convinced his children to do the walk.

“I'm walking for the new group of people that are getting this disease,” Tom said.

Sean Stobbe said he was walking to support research efforts to find better treatments for kidney disease.

One in 10 Canadians has kidney disease and millions more are at risk, according to The Kidney Foundation of Canada.

There is no cure for kidney disease. It is treated either by dialysis or a kidney transplant.

The organization says the number of Canadians being treated for kidney failure has tripled in the last 20 years. Today, more than 1,000 Ontarians are awaiting a kidney transplant.

Forty Kidney Walks will be held this year in communities across Ontario. This year's goal for Ontario walks is $740,000. [Read more]




From Inside Ottawa Valley, Canada, By Chris Must

Walkers join in kidney fundraiser for many reasons

Some were walking for family members or friends, and some were walking for themselves. Every participant in the 2016 Perth/Smiths Falls Kidney walk had a special reason for taking part.

The annual 5 km walk, held Sunday, Sept. 11 from the Crystal Palace in Perth, had a fundraising target of $10,000. In the six years the walk has been held, over $70,000 has been raised to support the efforts of the Kidney Foundation.

Caleb Robson of Lombardy attended the walk with his family. In 2007 at the age of 48 he was diagnosed with kidney failure. Three years ago he received a successful kidney transplant.

Robson’s troubles began when ill health forced him to make frequent trips to the hospital. “My levels were just not good for my kidneys, and they said, ‘You need to see a specialist now,’” he recalled.

Doctors found a growth on Robson’s pancreas, and decided to remove half of his pancreas and spleen – fortunately it turned out not to be cancer. Some time later, another tumour was removed. Because it wasn’t cancerous, the doctors were able to go ahead with the transplant operation. A person can’t have a transplant without being cancer-free for five years.

“My baby sister ended up being a match,” said Robson. Extensive testing of both the donor and the recipient took place to make sure the transplant would be successful, and that it wouldn’t harm the donor. While waiting for a transplant Robson underwent regular dialysis treatments, first in Kingston, and then at the dialysis unit at the Smiths Falls Site of the Perth and Smiths Falls District Hospital.

These days, said Robson, who still works full time managing a NAPA auto parts store in Carleton Place, life is good. Due to the anti-rejection drugs he has had to take, “I have now immune system now, and never will. Other than that, it’s been a blessing.”

Lynn Marsh, a walk team member, said she was involved in the walk because her sister and two nieces have PKD, or polycystic kidney disease. Because her sister, like many others, will need a transplant at some point, Marsh said, walk organizers also place a lot of emphasis on raising awareness of the need for organ donation.

Walk ambassador Sarah Wilcox, a 25-year-old Perth resident, suffers from Goodpasture Syndrome, a rare autoimmune disease.

“Your body creates antibodies that attack your kidneys,” said Wilcox. “I’ve know that my kidneys were going to fail since 2014.”

Wilcox said her father is hoping to donate a kidney. “Tell people to sign their donor cards,” she said. “That’s my main message.”

Wilcox has been on dialysis since December. Thanks to the Kidney Foundation and the donors who provide financial support, this year Wilcox was able to go to Camp Dorset in the Muskoka District, a summer camp for patients on dialysis. “The Kidney Foundation paid for the whole thing,” she said. “I didn’t have to pay a cent.”

Top fundraiser at the 2016 Kidney Walk was Glenn Richards, a resident of the Rideau Ferry area, who collected more than $2,000 in pledges. Richards said some credit belongs to his daughter Nina, who helped raise about a quarter of the amount.  [Read more]




From C Proud, Peoria, IL

Walk for PKD

The Walk for PKD is on Saturday, September 17th 2016.

Polycystic kidney disease (or PKD) is one of the most common, life threatening genetic diseases. It strikes both adults and children and often leads to dialysis or a kidney transplant. Thousands in America are effected by this disease. This walk is devoted to supporting PKD research and creating better lives for those who have been impacted by PKD.

Where: Veterans Shelter at VFW Park, Middle Shelter on 301 Springfield Rd. in East Peoria.

Check in/Onsite Registration is at 9am.

The Penny Kids Dash begins at 9:40am and the walk begins at 10 am.

For more information visit http://support.pkdcure.org/site/TR?fr_id=1542&pg=entry




Living with PKD

From Des Moines Register, Iowa, by Lisa Verhey-Budding


des.urb0920 amy harding01


Strangers often ask Amy Harding when her baby is due.

The 47-year-old Johnston woman smiles kindly and tells them she’s not pregnant.

Harding has a disease that causes swelling in her abdomen that can appear to those who don’t know her as a “baby bump.”

“Sometimes I just say yes, and thank you, and just roll with it because they say I look cute and that I am glowing,” Harding said. “Also, I don’t have to go into the big explanation ... all of the time.”

Harding, who was diagnosed with polycystic disease in her liver and kidneys when she was 18, has started speaking out to raise public awareness about the disease and to let others know they are not alone.

“I currently look pregnant because my liver is at 25 centimeters, and normal is seven centimeters,” she said. “My kidneys are 16 and 18 centimeters, normal is around nine or so for a female.”

Polycystic disease causes clusters of cysts to develop on Harding’s organs. It is hereditary. Harding got it from her mother and she’s passed it on to her daughter. The only fix is organ transplants.

In addition to the bulging abdomen, her disease carries other health risks.

“I had two aneurysms in my right carotid artery in my brain from it,” Harding said. “I had one fixed and they are watching the other one. It scares me.”

She had a partial hysterectomy when she was 35 due to the diseases. She has cysts in both breasts and had a naval hernia.

“We need more awareness about (polycystic kidney disease and polycystic liver disease),” she said. “You rarely see anything about them.”

Getting on the transplant list is crucial, Harding said. But there are criteria she must first meet.

“The doctors are wanting to get my kidney function at least down to 20 percent before they put me on the transplant list,” she said.

Her kidney function had dropped to 37 percent and one point, but at last check it was around 44 percent. She’ll visit her nephrologist in October to see if it has changed.

Until then she’ll wait.

“Dialysis scares me and the waiting for organs scares me,” she said. “So I’m stuck like this for the time being.”




PKD Reseach

From RAPS.org, Regulatory Affairs Professional Society, By Zachary Brennan

Total Kidney Volume Qualified as a Biomarker by FDA for ADPKD Trials
The US Food and Drug Administration (FDA) on Thursday released new guidance providing a qualified context for use for the biomarker total kidney volume (TKV) in studies for the treatment of the common, life-threatening genetic disease known as autosomal dominant polycystic kidney disease (ADPKD).

According to the PKD Foundation, ADPKD is the fourth leading cause of kidney failure, and more than 50% of people with ADPKD will develop kidney failure by age 50. And according to the UK’s National Health Service, there is no cure for ADPKD and it isn’t possible to stop the fluid-filled cysts that cause the kidney failure from forming.
Guidance Details

“For patients with ADPKD at high risk for a confirmed 30% decline in their eGFR, TKV was qualified based on a collection of data from multiple study sites, as well as on results from imaging modalities (i.e., magnetic resonance imaging (MRI), computed tomography (CT), or ultrasound (US)) and from analysis methodologies (i.e., stereology and ellipsoid calculations),” the guidance says.

FDA says trials should recruit patients with ADPKD of at least 12 years of age and that TKV “should be calculated from the left and right kidneys measured with a validated and standardized image acquisition and analysis protocol within the trial.

“Baseline TKV can be used in combination with the patient’s age and baseline eGFR [estimated glomerular filtration rate] as an enrichment factor in ADPKD clinical trials to select ADPKD patients at high risk for a progressive decline in renal function,” FDA adds.

In terms of determining TKV, FDA says various imaging modalities and post-processing methods are available with different levels of precision.

The qualification recommendations in the guidance were developed using the process described in 2014 guidance called “Qualification Process for Drug Development Tools.”

Qualification of Biomarker Total Kidney Volume in Studies for Treatment of Autosomal Dominant Polycystic Kidney Disease

Sunday, September 11, 2016

Living with PKD: Burlington IA, Melbourne, AU, Wearable Artifical Kidney Debute, PKD Fundraising: UK, Non-inherited PKD

Living with PKD

From The Hawkeye, Burlington, Iowa, by Rex Troute

My old self

I got the call.

I sat down at my desk at 7:30 a.m., Saturday, Aug. 20, and the telephone immediately rang. I assumed it was one of The Hawk Eye’s customers to suggest a story idea or to complain about something. It was neither.

It was a transplant coordinator at the University of Iowa Hospital and Clinics telling me they had a kidney for me.

After three years on the waiting list and two years of spending 12 hours a week on dialysis, my day had come.

My adrenaline shot up to 1,000 percent. I immediately called my mother and told her we were going to Iowa City.

But being shorthanded at the newspaper at the moment, I felt obligated to finish my Sunday business pages, which I did in record time.

My mother and I made it to Iowa City by 1 p.m., where they took a blood test to make sure the new kidney was a match. I went into surgery at 7 p.m. and was out of the operating room by midnight.

The day after was the worst as far as pain, as getting in and out of bed to walk, hurt the most. Of course, what made it even more difficult was I was hooked to an IV and a catheter.

But with each day, it got easier to get out of bed and the pain diminished.

I returned home Aug. 25 to convalesce. I am not supposed to drive or work for two months. We will see about that.

The reason I needed a kidney in the first place is I have polycystic kidney disease. It is hereditary, as my father had it and his brother, my uncle, had it. My father lived another 12 years after his operation, and my uncle still is going strong after receiving a kidney from his wife.

The disease slowly erodes the function of the kidneys to where they don’t clean the impurities from your blood well enough, which can make you feel poorly on a daily basis. It is the reason dialysis is required three times a week to get your blood cleaned.

I owe a big debt of gratitude to the nurses at the Southeast Renal Dialysis Center in West Burlington. I won’t name them here, but will thank them personally later.

And of course, I was well cared for in Iowa City by many doctors and nurses, some who were a bit more ornery than others.

And some day, I will thank the family of the woman who died in a traffic accident and the reason I have a new kidney. But I will let them mourn their loss and make that connection somewhere down the line.

I guess I needed my transplant before I could think about being an organ donor myself. Now that it has happened, I gladly will donate my organs when I pass from this earth. I can donate a liver, two lungs and a good heart to save or extend several people’s lives.

A good friend of our family received a double-lung transplant from UIHC, which extended his life.

I guess what I’m asking the faithful readers of The Hawk Eye is, consider being an organ donor. It saves lives. Think about it.

My new kidney is functioning very well, and I plan to make the most of my remaining years.

Unfortunately, I can’t write business stories for awhile, but I might write the occasional column from home.

As for my fellow workers, they’ve asked if I’m going to start feeling my feminine side due to my new kidney’s origin.

It is too early to tell, but watching a couple football games Thursday night instead of watching a movie like “Beaches” is a pretty good indication I’m still my old self. And now that I have a new kidney, I plan to keep it that way.




From the Herald Sun, Melbourne, Australia, by LUCIE VAN DEN BERG


Kathryn Smith will be taking part in the annual Kidney Health Research Walk. Picture: Jason Sammon


KIDNEY disease is like a family curse for Kathryn Smith, striking seven members of her family.

But she doesn’t get despondent knowing that she lost the genetic lottery that gave her a one in two chance of inheriting the condition.

Instead, the 31 year old is determined to stay one step ahead of polycystic kidney disease, which affected her father, sister, three uncles and two cousins.

“Part of me thinks that this disease has gone through my whole family and it’s so unfair, but the other part knows that I am lucky to have people to go through it with me,” Miss Smith said.

“It can be scary knowing what the future holds, particularly looking at my cousin who is on dialysis and needs a kidney transplant, but I have taken steps to extend my lifespan.”

No meat, no salt, plenty of water and regular kidney checks seem to be stopping the tiny cysts from corrupting the organs and preventing them from filtering the blood effectively.

“It is known as the silent killer because symptoms typically don’t appear until

kidney function is almost completely lost, by which point it is too late,” Kidney Health Australia CEO Ms Mikaela Stafrace said.

This is why 90 per cent of the estimated 1.7 million Australians with all forms of kidney disease are unaware they have it, leaving them destined for dialysis or a transplants.

This Sunday Kathryn will take part in the The Kidney Health Research walk at the Botanic Gardens to raise money for the charity which wants to find better ways to detect, prevent and treat it.

www.2016researchwalk.gofundraise.com.au




Wearable Artificial Kidney

From KENS TV, San Antonio, Texas

Wearable kidney debuted at kidney patient symposium

4.5 million people across the nation have kidney disease. But Thursday, patients, families, and caregivers got together at the Texas Kidney Foundation's Kidney Patient Symposium to learn more about how they can battle the illness.

"I didn't feel like I was through with this world. I wanted to do more," said Marion Sweatmon, who is currently on dialysis.

That's how the 81-year-old felt when he was told he had kidney disease last October. "It hit me so hard that a lot of doctors wanted to give up on me but my doctor didn't," Sweatmon said.

His wife Carol, who was attending the symposium with her husband, said, "It's unimaginable now to think that there was a time when people were telling him to give up. In fact the doctors and the nurses are astounded."

Now on dialysis he's now living a near-normal life. That's just one of the many stories heard here at the Texas Kidney Foundation Kidney Patient Symposium.

Joanne Ebert is another dialysis patient KENS 5 spoke with. She was diagnosed with polycystic kidney disease 20 years ago. "It's still had its impact but it was not something I was totally not expecting," said Ebert. That's because it's hereditary. "If you have a living donor it goes a lot quicker but because this runs in my family and my daughter has it we can't pass to each other," Ebert said.

Like Sweatmon, dialysis is keeping her alive.

"If you are on dialysis it's a good thing. It can provide things that the kidney can no longer provide. It can remove fluids. It can control potassium. It can control the sodium the salt or the swelling," said Dr. Karina Vasquez, a nephrologist from the San Antonio Kidney Disease Center.

Many at the symposium came to see a wearable artificial kidney. With this groundbreaking device patients will be able to eat foods they wouldn't normally be able to eat, continue to work and play as they normally would, and live longer, fuller lives. Which is exactly what Ebert says kidney patients need to do. She said, "It's not the end of your life it's what you make of it."




PKD Fundraising

From Biggin Hill News, United Kingdom, by Kevin Black

Paul to cycle length of UK to raise money in memory of his son



A Caterham man is taking on a gruelling challenge in a crusade to raise more than £4,500 for charity in memory of his son, Ezra Kensit Sims.

Paul Sims will embark on the cycle ride of a lifetime on September 11, as he rides from John O’Groats to Land’s End, to raise valuable funds for the Polycystic Kidney Disease Charity (PKD).

The gruelling challenge, which will see over 1,200 miles covered and 45,000ft climbed – double the height of Mount Everest, follows the tragic passing of Paul’s baby son late last year.

The painful, personal journey for Paul and his partner, Bonnie, started during pregnancy when baby Ezra was diagnosed with having infantile polycystic kidney disease. A condition faced by Paul and many members of his beloved family – the majority of whom are fortunately currently asymptomatic, is typically not apparent until adulthood and can be well managed subject to the severity of the condition.

What happened to baby Ezra is rare. The disease was identified in utero, at the couple’s five month scan and was sadly already at a very aggressive stage. Ezra’s tiny lungs and kidneys were fatally impaired. A week later at just 21 weeks Bonnie was induced and gave birth to their beautiful angel, who they embraced throughout an emotional blessing.

Now, in memory of his son, 42 year old Paul is preparing to cycle the length of the country to raise essential funds for the charity which has provided him and his family with so much support, PKD.

The charity, established in December 2000 by patients, professionals and members of families affected by polycystic kidney disease, works to raise awareness of the condition and improve the quality of life of those suffering. The condition is the world’s most common inherited kidney disease, in which fluid-filled cysts, develop, multiply and grow in both kidneys. Over half of those affected will have kidney failure by the age of 60.

Speaking on the impending challenge, Paul said: “I’ve lived with polycystic kidney disease from a young age, having seen numerous members of my family affected before being diagnosed with the condition myself in 2001.

“Nothing, however, prepares you for the loss of a child. It is the first time the condition has affected our family this early in life and it turned our worlds upside down. The support we received from staff at St. Georges & East Surrey Hospitals and the Polycystic Kidney Disease Charity has been invaluable; it’s important to me to show my appreciation and to support the organisation’s work in any way that I can.” [Read more]




PKD Disease

From News Medical, by Dr Liji Thomas, MD


Cystic kidney disease is a condition in which the kidney develops several fluid-filled sacs or cysts. It may develop in both children and adults. It is usually seen in:
People with chronic kidney disease (CKD)
People with end-stage renal disease (ESRD), especially on those who are on dialysis. The risk of developing these cysts increases as the period on dialysis lengthens.
The formation of multiple cysts is also seen in conditions that cause hypokalemia, certain metabolic conditions, and toxic injury to the kidney

Acquired cystic kidney disease does not usually present with any symptoms unless complications set in.

Inherited vs non-inherited cystic kidney disease

Unlike the large cyst-filled kidneys found in people with inherited polycystic kidney disease (PKD), the kidneys in acquired cystic kidney disease are normal in size or smaller, and there is no genetic cause for the cysts. Rather, they are due to the damage that has occurred to the renal tissue. Patients with genetic PKD have a family history of similar disease, unlike those with the acquired type.

There is also no cyst formation in other parts of the body, whereas liver and pancreatic cysts are common in the inherited condition. Cysts herald the slow progression to CKD in the genetically caused PKD. On the other hand, cysts occur several years after the onset of CKD in the acquired type.

Pathogenesis of acquired cystic disease of the kidneys

The incidence of cystic kidneys varies from between 7-22% in people who suffer from chronic kidney disease but are not on dialysis, to almost 90% in those who have been on dialysis for 8 years or more. The cause of cyst formation is as yet not understood, but has to do with the kidney disease itself.

CKD results in the accumulation of several metabolic waste products in the blood. Many of these, but not all, are removed from the blood by dialysis. It is thought that one of the waste products which is not filtered by dialysis accumulates in the body, and is responsible for cystic formation in the renal tissue. This is supported by the finding that cystic changes often regress in the damaged kidneys after a successful kidney transplant (the diseased kidneys are not routinely removed during a transplant).

Complications

Infection of a cystComplications related to cystic kidney disease include:
Bleeding into a cyst with resulting pain and hematuria
10-20% of developing kidney tumors
A slightly higher chance of cancerous kidney tumors

Diagnosis and treatment

Diagnosis of cystic kidney disease is on the basis of symptoms such as back pain, fever and bloody urine in a patient who is on long-term dialysis. It may be confirmed using imaging tests such as ultrasound, CT scanning or MRI scanning to visualize the kidneys. Treatment largely deals with symptoms, such as draining large cysts which are causing pain, antibiotics to control infection, and tumor removal. Regular screening at intervals of three years is sometimes advised for all patients with CKD, especially if they develop tumors.

Sunday, September 4, 2016

Walk for PKD; Helping Those with PKD; Redesigning the Organ Donation Market

Walk for PKD

From Huffington Post, Canada, by Paul Kidston National President of the Kidney Foundation of Canada

The statistics are shocking. one in 10 Canadians has kidney disease and millions more are at risk. Yet, many don't even understand what kidneys do. I certainly didn't understand anything about kidneys until I was personally impacted at a young age.

I watched my father, brother and sister deal with failing health and the grueling treatments of kidney disease. I'm the only one of my father's children without kidney disease. I see the ramifications of kidney failure on a daily basis through my volunteer involvement with The Kidney Foundation of Canada.

My family's PKD story

Polycystic kidney disease (PKD), a genetic kidney disease, ripples through my family. I first heard about kidney disease when my father was diagnosed with PKD -- and later died from complications of a kidney transplant. Those with ADPKD have a 50 per cent chance of passing it on to their children and in my father's case, it was passed on to both of my siblings.

My brother recently passed away from kidney failure, and my sister has just received a kidney transplant. I can say from first-hand experience that families impacted are consumed by this disease.

Five things you need to know about polycystic kidney disease (PKD):

1. It is one of the most common, life-threatening genetic kidney diseases.

2. There are two forms: autosomal dominant polycystic kidney disease (ADPKD) and autosomal recessive polycystic kidney disease (ARPKD).

3. It causes multiple cysts to form on the kidneys, causing them to become very large and kidney function to decline.

4. Early intervention is important to preserve kidney function.

5. A few recognizable symptoms include high blood pressure, lower back pain, blood in the urine and kidney stones. If you're experiencing these symptoms, speak to your doctor.


Through the Foundation and my family, I've seen that those living with kidney disease often progress to an unbearable pain that no one can see, and eventually need dialysis or a kidney transplant -- that is if they're eligible and if they can find a suitable donor. I've seen those living with kidney disease suffer in isolation because they don't want to talk about it or have a hard time communicating what it is like living with a disease when you appear to be healthy from the outside.

This is why we need to continue our fight against kidney disease.

What we're doing to help

The Kidney Foundation of Canada is in the midst of wrapping up its kidney walks in some provinces. The walks are Canada's largest event dedicated to raising funds for kidney research and programs that help support Canadians living with kidney disease. It's events like these that help the Foundation support those who need it most: patients and families.

These walks from coast to coast also build a kidney community and help those impacted feel less alone and give them a more positive outlook on their disease. It is these events that bring patients together with a collective voice to feel empowered and engaged to take action. [Read more]




From Wilson County News, Texas, By Dorcella Sunday

We Are Family walks with purpose and hope for a cure for PKD

On Saturday, Sept. 10, our team, We Are Family, consisting of about 25 family members, will participate in the annual San Antonio Walk for PKD at O.P. Schnabel Park in San Antonio. Our goal is to raise funds to find a treatment and/or cure for this genetic disease that has devastated our family for generations.

Our family, along with so many others throughout the United States (600,000) and the world (12.5 million), has known how this genetic disease has taken the lives of loved ones because there is no treatment or cure.

Having been on dialysis myself, I received the gift of life from my younger sister, Dene Voigt Kyrish, almost 11 years ago. On July 4, my cousin, Dorothy Schnautz Bray, received a kidney after being on dialysis for more than four years. Numerous other family members are living with PKD, including our son, Todd, and our son, Jon Sunday, who started dialysis in February. We all await the day that he, too, will receive the gift of life.

The process of finding a treatment and/or cure is the ultimate goal of the PKD Foundation. It is currently funding 15 research grants. A study of the drug Tolvaptan (brand name JINARC) has shown that it slows the growth of cysts on kidneys; however, the FDA is requiring more study before it can be used in the United States. It has already been approved in Japan, Canada, and Europe.

We invite everyone to the walk on Sept. 10. Free registration begins at 7:30 a.m., with a Penny Kids Dash at 8:15 a.m., followed by the opening ceremonies led by KENS 5 early morning co-anchors Sarah Forgany and Barry Davis. The 1K or 3K Walk/Run starts at 9:15 a.m. There will be free food pre- and post-walk. Registration and donations to our team may be made at walkforpkd.org/sanantonio.

About PKD

Polycystic Kidney Disease (PKD) is one of the world’s most common life-threatening genetic diseases. It causes cysts to form on the kidneys, and ultimately causes kidney failure. There is no cure or treatment. Once diagnosed with end-stage renal failure, the only options are dialysis or a kidney transplant.

For more information, visit https://pkdcure.org.




From Inside Ottawa Valley, Canada

Join us and walk for a friend or relative Sept. 11

Health Canada is recognizing Sept. 4 as National Polycystic Kidney Disease (PKD) Awareness Day – a special day devoted to raising awareness of this life-threatening, genetic disease. Polycystic Kidney Disease (PKD) is an inherited disorder in which clusters of cysts develop primarily within your kidneys. Cysts are noncancerous round sacs containing water-like fluid. The cysts vary in size and, as they accumulate more fluid, they can grow very large. Autosomal dominant (ADPKD) is one of the most common life-threatening genetic diseases. ADPKD affects approximately one in 500. It does not skip a generation. There is usually a family history of ADPKD. Parents with ADPKD have a 50 percent chance of passing the disease on to each of their children.

As the disease worsens, PKD cysts can slowly replace much of the kidneys, reducing kidney function and leading to kidney failure, necessitating ongoing kidney dialysis or a transplant to prolong life. People with polycystic kidney disease have a higher risk of aneurysm, especially those younger than age 50.

Although kidneys usually are the most severely affected organs, Polycystic Kidney Disease can cause cysts to develop in your liver and elsewhere in your body. Although a cure for PKD is not available, significant progress in research of PKD has been made and novel treatments are available to ease symptoms and delay the progression of the disease. Lifestyle changes and medical treatments may help reduce damage to the kidneys from complications, such as high blood pressure. As many patients will require kidney and or liver transplants, the requirement for registering as an organ donor becomes more important. For more information see:www.kidney.ca/polycystic-kidney-disease, www.endpkd.ca or www.beadonor.ca

The Perth and Smiths Falls Kidney Walk, sponsored by the Kidney Foundation of Canada is to be held Sept. 11 at the Crystal Palace. Registration starts at 10 a.m.

Join us and walk for a friend or relative.




Helping those with PKD

From Kenosha News, Wisconsin, BY MELINDA TICHELAAR

Co-workers band together to help ailing colleague

Community State Bank employees donate vacation time to dialysis patient


Dialysis patient Kelly Huston, left, of Community State Bank in Paddock Lake, is on a kidney transplant waiting list. Scott Huedepohl, right, president and CEO of Community State Bank, says employees have donated time off to Huston to help out with his medical needs. ( KENOSHA NEWS PHOTO BY BRIAN PASSINO )

Across Kenosha County, dozens of Community State Bank employees got one fewer vacation day than normal this summer. They missed out on a day at the beach, or a fishing trip, or the rides at Six Flags, because they putting a co-worker first.

This year, the bank’s employees donated 96 days of their own vacation time to help Community State Bank Market President Kelly Huston, who is suffering from polycystic kidney disease. Huston’s condition is slowly getting worse; he is currently on dialysis, and without a new kidney, he will die.

“We talk about family first all the time, and we look at that as our extended family and internal family,” said Community State Bank President and CEO Scott Huedepohl. “People here care for each other. The vacation thing is the result of some employees saying, ‘We haven’t done enough to help one of our family members.’”

Huston has to leave work early to do dialysis three days a week, but the generosity of his co-workers means he can focus on his health and worry less about finances.

“They’ve been incredible,” Huston said. “It’s so unique here. I know for a fact that none of this would have happened (at my previous job).”

Six-year battle

Huston was diagnosed six years ago, when he was 49. The pain struck like lightning; one minute, he sitting at his desk in Paddock Lake working, and the next moment he could barely stand.

After an agonizing 24 hours and an incorrect diagnosis of gas, doctors realized he was bleeding internally and rushed him into surgery. The devastating diagnosis of polycystic kidney disease came next.

Since then, he’s had several surgeries. In March, he became so ill that he could barely walk to his car. He was suffering from nearly constant pain and nausea. That’s when he started dialysis, which did not help instantly. He had to have three surgeries before dialysis really started to work.

Still, it’s in his nature to be positive, and he’s named his dialysis machine at Fresenius Kidney Care “Charlie.”

“Dialysis is not fun by any stretch, but I am very thankful for that machine that keeps me going,” he said. “It hasn’t been easy for me. I’ve bled all over the place, thrown up many times, but the the staff there has been beyond belief. They’ve gotten me to this point today.”

That’s the sort of “glass half full” Kelly-ism that motivates co-workers to help, Huedepohl said.

“It’s one of the reasons we decided to do this. Kelly is such a positive and humble person,” Huedepohl said.

Donor needed

Right now, Huston is focused on staying as healthy as he can to make sure he’s ready for a kidney when a donor is found. Many of his relatives and friends have been tested to be potential donors, he said, but all have been excluded because they’re incompatible or not healthy enough.

Huedepohl has tried to help the cause by writing a blog encouraging readers to flip over their driver’s licenses and make sure they’ve filled out the “Anatomical Gift” area.

The need is great; nationwide, 100,000 people are waiting for kidneys, and every day 13 die. There are 2,000 people in Wisconsin waiting for a kidney donation.

“Our best goal is somebody tests to give a kidney to Kelly. But the easy goal is if we can get a thousand people to sign the back of their driver’s licenses, there might be somebody who saves a life,” Huedepohl said. [Read more]




Organ Donation

From Ricochet, by Majestyk

Redesigning the Organ Donation Market



There is no market for organs, so my title itself is misleading. US Code, Title 42, Chapter 6A, Subchapter II, Part H, Section 274e states:

It shall be unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce. The preceding sentence does not apply with respect to human organ paired donation.

Persons violating this law “shall be fined not more than $50,000 or imprisoned not more than five years, or both.”

So, in order for market forces to be introduced into the organ donation market, the law would have to be changed. The bit above regarding paired human organ donation is discussed in this fascinating episode of Freakonomics radio about systems of exchange where money isn’t allowed to trade hands… for instance, in organ donation. So the question becomes: How can we go about doing that?

The first thing we need to tackle is why this law exists in the first place. Ever since organ transplantation became a viable technology there have been people who have been opposed to it for a variety of reasons, starting with religious/spiritual objections, all the way down to the “ick” factor. This in turn has led Congress to pass this law in order to allay people’s fears that the poor could be exploited or that predatory doctors with rich benefactors in need of an organ would prowl the various sick wards of a hospital in search of desperate people in need of a quick buck.

In fact, the “predatory doctor” fear is one of the greatest concerns cited by people when asked why they won’t sign an organ donation card. To be fair, it is a fairly horrific thing to contemplate (as the plot of several horror films attests) a doctor assessing your body as a butcher might a hog. So, there is a well-established cultural taboo backing this prohibition. We don’t allow people to treat their organs as being “fungible” in the same way that money is.

The trouble comes when considering the unintended negative consequences of the ban. As a result of the fact that money can’t lubricate these sorts of transactions the market is “sticky” — there aren’t enough organs to go around because normal people don’t want to give up a perfectly healthy kidney in exchange for the satisfaction of a job well done and a not-inconsiderable amount of post-operative pain. However, the real unintended consequence comes in terms of lives lost and dollars spent.

Medicare spent $57.5 billion dollars on kidney dialysis in 2009 – an average cost per patient of $72,000 per year. 13 people die every day awaiting a kidney which never arrives. These are real costs – and ones we should be sensitive to.

By comparison, a kidney transplant costs Medicare about $106,000 for the first year and about $17,000 in maintenance each year thereafter. Keep in mind these were 2009 dollars and the costs are surely higher today. While it doesn’t take a genius to see that public health dollars would be better spent on transplants than dialysis, particularly considering the medium to long term, that also ignores the vast improvement in the quality of life which the recipients get from not having to live their lives around dialysis centers.

So how do we get from here to there? First we have to overcome people’s justifiable fears of exploitation. The paired-donation concept goes part of the way towards accomplishing this by allowing a person in need of a kidney to access a much broader range of potential donors, as a person who isn’t them can donate an organ in their name to a third party in exchange for a matching organ of their own. It’s totally voluntary. But this still limits the universe of potential donors to the family and (deeply committed) friends of those who need a kidney themselves. In order to better satisfy this need a broader net needs to be cast.

To that extent, I would propose that the current prohibition be lifted, and replaced with a system that works like this:
Organ donation