Living With PKD: Houston, South Elgin, Ozarks, Paris, Omaha

Living with PKD

From Woodlands Online, Texas, by Shellby Olive

Bariatrics patient with kidney disease loses 200 pounds in one year

Standing over six feet, J.T. Alford had always considered himself to be a big guy, but the 200-pound weight loss over the course of a year doesn’t even begin to cover his journey.

Four years ago, unmanageable high blood pressure led Alford to a cardiologist. He took three different medications simultaneously for blood pressure alone but took several others, totaling to 10 prescriptions, for other health issues. The cardiologist ordered a CT-Scan and discovered that the source of his high blood pressure was not from his heart, but from his kidneys. He was then diagnosed with polycystic kidney disease, a genetic disorder that causes multiple cysts to grow in the kidneys.

“The polycystic kidney disease is going to wreak havoc on your blood pressure, triglycerides and cholesterol big time,” Alford said.

Alford’s kidney function was declining, and he was in need of a transplant. At a weight of 420 pounds, he wouldn’t get on the list anytime soon. His nephrologist, Dr. Adam Frome with CHI St. Luke’s Health - The Woodlands Hospital, told him that he needed to figure out a way to lose 200 pounds and referred him to Dr. Jason Balette, the Metabolic and Bariatric director at the bariatrics center.

“I’ve been through two kidney doctors. I tried the Kingwood and Houston areas, and the guys there just didn’t impress me very much, so I just decided to do this on my own and ended up in Dr. Frome’s office,” Alford said. “I couldn’t say anything negative about him whatsoever, and he’s been awesome for me and my family. Dr. Balette is the same way. He’s been a great guy and very helpful. Anytime I’ve called, his staff, office and everybody who has anything to do with that program have been good to me.”

CHI St. Luke’s achieved accreditation as a comprehensive center through the Metabolic and Bariatric Surgery Accreditation and Quality Improvement Program last June. As the nationwide accreditation and quality improvement program for metabolic and bariatric surgery, it provides an objective and measurable means in which a facility can demonstrate its high-quality care in a multidisciplinary format. Maintaining this status requires consistent attention to program details with a periodic review of outcomes, pathways and protocols to ensure that the center provides safe and competent care. It also guarantees the facilities’ continual commitment to quality of care and serves as a reflective and introspective exercise of its own processes and protocols. [Read more]

From Chicago Tribune - The Elgin Courier News, by Janelle Walker

South Elgin Fire trustee seeks kidney donor

Jeff and Vicki Speyers aren't used to asking for help. They help others in their community when they can, but telling others about their own problems isn't something the South Elgin couple likes to do.

For Jeff, however, it has become time to ask the community for help. After having suffered from heredity kidney disease — the same disease that killed his grandfather, father and brother — he needs to find a kidney donor.

Jeff has polycystic kidney disease. The condition, which he was diagnosed with 14 years ago, often leads to brain aneurysms — the event that also killed male family members.

The disease keeps the kidneys from functioning properly.

"Your kidneys grow cysts and suffocate the kidney. The only cure is a transplant and once get you get the transplant, it is gone," Jeff said.

Vicki was tested to see if she could donate, but was ruled out. The couple never had children who could be tested as possible donors — which may have prevented them from creating a donor but also prevented the condition from being passed on, Vicki said.

He has lived with the condition by managing his diet, habits and exercise, said Jeff. But the situation has become dire — both of Jeff's kidneys are only functioning at 15 percent each, he said.

While he can live on dialysis, his doctor warned him that those treatments become a part-time job on its own, having to go to a clinic two or three times a week for four-hour treatments.

A home version of dialysis that is also now available must be done every day for up to eight hours.

The couple run Hans and Sons Plumbing in South Elgin. Hans was Vicki's grandfather, and she took over from her father. Jeff married into the business, having worked for Vicki's father.

As the disease has advanced, so has its affect on Jeff's health. He's more worn down and tired. He has been hospitalized for blood clots, but so far brain scans have shown no vessels that could cause an aneurysm, he said.

His back bulges on either side — not from love handles but because of the amount of fluid and cysts sitting on his kidneys.

"It is pushing everything — all of my other organs and the stomach," Jeff said. [Read more]

From Lake News Online, Camdenton, MO, By AMY WILSON

A caretaker becomes the patient


A nurse in the obstetrics department of Lake Regional Hospital, Jamie Zak has made a life of caring for babies and new mothers. But after having her third child three years ago, the caretaker has become the patient.

On a pacemaker and waiting to see if she can get on the transplant list for a kidney, Jamie is a beautiful mother, wife and friend - not to mention a great nurse - even as she can hardly remember what it feels like to be well and feel good.

“I was admitted [with heart problems] two weeks after giving birth, but I had problems immediately,” she says. “Each day is different. Some days I feel better than others, but I don’t know that I remember what it feels like to feel good.”

Having issues with arrhythmia, Jamie was put on a pacemaker about a year and a half ago. While the pacemaker has helped with her heart, she is now faced with early onset of polycystic kidney disease - a genetic disorder that causes numerous cysts to grow in the kidneys.

Jamie’s mother has it, but did not get sick until later in life.

Through it all, Jamie says she has tried to remain positive and continued to work, caring for patients at the hospital and then her young child at home.

She just recently resigned, however, as PKD has led to end-stage kidney failure. Now surviving with dialysis, she is going through evaluation for a kidney transplant at Barnes-Jewish Hospital in St. Louis.
After initial testing, things are looking good for Jamie to get on the list, she says.

With a transplant likely in her future, Jamie’s work family continues their support of her.
Jessica Willis and other nurses in the OB department are holding a fundraiser in support of Jamie’s transplant.

“We are looking for people to come and have tons of fun with us while raising money for an amazing nurse who has spent her life taking care of newborn babies and now needs everyone else's help to save her own life,” says Jessica.

Jamie’s friends are still seeking donations for the silent auction and general monetary donations are also welcome.

Jamie says she is grateful for her friends and family and wanted to thank the community.
“People have been so awesome. I want give them a big thank you.”

Fundraiser for Jamie Zak

What better way to support and celebrate life and family than with a pool party.
A Fundraiser for Jamie Zak will be held Saturday, June 25 at the Eldon Aquatic Center. The pool party from 6-10 p.m. will also include a silent auction from 6-8 p.m. and a Glow Run from 8:30-10 p.m.  [Read more]

From Melton Times, United Kingdom

Wymeswold cyclist Dan (41), completes tough 388 mile bike ride to Paris for kidney awareness

A determind cyclist on the verge of receiving a kidney transplant from his mum has completed a charity bike ride to Paris from his home in Wymeswold.

Dan Norcott has pedalled 388 miles to the French captial in just 10 days, raising over £7,500 for the Leicester Kidney Care Appeal.

The 41-year-old took to the saddle with friends Rich Moss and Andy Stafford despite battling with polycystic kidney disease - the same condition that unfortunately led to the death of his father, Malcolm, in 2004.

Dan said: “England was hot and sunny and we stopped at pubs for lunch and dinner every day, meeting friends and even a fellow kidney patient on the way.

“The hardest bit of the whole ride was East Grinstead to Newhaven on day five because it was the longest, 54 miles and 2,900ft of climbing. I also had a blood pressure crash, which meant that I was on the verge of fainting for much of the day, but I got through it.

“In France, the roads were smooth and the cycle paths great, although the weather a bit duller. Shaun Chatterton came with us driving my car with suitcases in and checked us in and out of hotels. He was an absolute lifesaver.

“We got to Paris alive and cycled down the Champs Elysees as happy as can be, and proceeded to get nicely drunk in Paris and ate a lot of nice food. While we were there we went to see Sacre Couer, the view from Galleries Lafayette, Montmartre, lots of Saint Germain and the Marais. We also took a boat trip down the Seine before I drove us all home in the car with the bikes on a rack.

“So far we’ve raised £7,736 for the Kidney Care Appeal, a small specialist charity in Leicester, that funds many small scientific research projects which are then often taken up for more funding by larger charities.

“Recently they funded a trial of a specially adapted exercise bike for patients undergoing dialysis which was a great success and has now been funded for larger trials by a bigger charity.”

Dan blogged daily about his cycling journey to Paris. To see how he got on in his own words visit http://pedallingtoparis.com/blog/

l To sponsor him visit his JustGiving page at: https://www.justgiving.com/Pedalling-to-Paris-with-PKD/5

WOWT, NBC Affiliate, Omaha, NE, by Erin Murrey

Transplant of love

We can't always control what we inherit from our families and that's certainly true when it comes to genetics. A bad gene can sometimes be fixed with a transplant of love.

Two things run in Becky Moser's family. One is polycystic kidney disease and the other trait is love. "More than loved. I still get kind of emotional. It's very hard to know that they love you that much that they would give."

Two years ago, Becky's kidneys were failing. "The minute I walked in he started talking about transplant and I kind of looked at him and I said, are you talking about me? And he said, 'yeah, you are to the point that you have to be on the list."

Almost everyone in Becky's family has polycystic kidney disease though and couldn't donate. So her five step daughters stepped up. Candace was a match, but at the time she was 60 pounds too heavy to be allowed to donate. "And she has always been there for me and I needed to do this for her because I didn't want to lose her," says Candace Moser.

Through Zumba and walking, Candace dropped the weight and on March 10th went under the knife at Nebraska Medicine, giving Becky a kidney a day before her birthday and a day before having to go on dialysis. "She said to me, are you sure you want to do this on your birthday weekend?" said Becky. "I said it's not like I celebrate it anyway. And secondly, I couldn't ask for a better present."

The transplant was a success. The family is thankful that love turned out to be the more dominate genetic inheritance. "I am just glad she is doing really well," said Candace. "It's all worth it."

Both women want to encourage life donations.

Dialysis or Transplant, Which to Choose; Pioneering Transplant Technique; Using Genome to Diagnose PKD; World Hypertension Day; PKD: Walking & Crusin'; Pay it Forward

Living with PKD

From The Health Site, by Debjani Arora

Dialysis or kidney transplant: What should you choose and why

If someone is suffering from kidney problems, where the organs have ceased to function to its optimum a kidney transplant is always preferred over the procedure of dialysis. However, there can be some practical problem which might delay kidney transplant – finding a matching donor, the health of the patient and other parameters that need to be taken into consideration. However, if the kidneys are in a detrimental state, which a urine report high in creatinine can point out and transplant is not possible, dialysis is the next best option.

‘Once the function of the kidneys drops exponentially, the creatinine level in the blood rises to fatal levels. In such a situation, the heart can literally just stop. In this scenario, doctors purify the blood of the patient by a mechanical process called dialysis. This entails connecting the patient to a machine which filters blood. However, unlike the natural kidneys, the dialysis machine also sucks out a lot of important nutrients from the blood. Thus, patients on dialysis become fragile and cannot survive beyond a few years,’ Dr Anup Ramani, Uro-Oncological & Robotic Surgeon, Lilavati, Breach Candy, Saifee Hospital.

Hence, dialysis is a temporary option when it comes to treating diseased kidneys. Once the patient gets a donor, which can be a blood relative or a friend who is willing to donate a kidney, the chances of survival of the patient increases manifolds. However, there are situations when even with a donor a patient might have to wait for the procedure to take place. For instance, high blood pressure or diabetes can pose a threat to the patient. These health conditions need to be brought under control before taking the procedure of transplant further. Other health conditions that can prevent one from gettting a kidney transplant are cancer, dementia,obesity with a BMI over 40. However, it is better to consult with your doctor on which treatment option will be the best for you. If you don’t suffer from any ailment other than deteriorating kidney and have a donor, it would be ideal to opt for a transplant over dialysis.

From Chronicle Live, United Kingdom, BY CRAIG THOMPSON

Washington dad becomes one of first in UK to undergo pioneering transplant surgery

Brian Richards of Houghton-le-Spring, County Durham, who is living life to the full after a pioneering kidney transplant at Newcastle's Freeman Hospital

Brian Richards received a kidney which previously would not have been deemed suitable for transplantation

A dad from Washington has become one of the first in the UK to receive a life-saving transplant via a pioneering new method.

Brian Richards is today living his life to the full just weeks after undergoing surgery at the Institute of Transplantation, at Newcastle’s Freeman Hospital.

Brian, 61, was the first patient in the North East to receive an organ via the technique which takes donor kidneys, previously deemed unsuitable for transplant, and assessing whether they can work properly on a specialist perfusion machine outside the body.

It is hoped the new method will increase the number of transplants using organs which, traditionally, were not considered suitable.

Dad-of-two Brian was diagnosed with polycystic kidney disease three years ago, an inherited condition in which fluid-filled cysts develop in the kidneys leading to serious organ damage.

Colin Wilson, a transplant surgeon at the Freeman Hospital, carried out Brian’s operation in March this year.

He said: “This is a very exciting development for our patients waiting for a kidney transplant.

“Everything went smoothly with the kidney perfusion and Brian was discharged 10 days after his transplant with no complications.

“His new kidney is working well and he has not required any dialysis since the operation.”

The technique, which warms the kidney to body temperature to assess how well it’s working before a decision on transplantation is made, was developed by Professor Mike Nicholson from the University of Cambridge.

Professor Nicholson is now working closely with the team at the Institute of Transplantation to increase the supply of donor kidneys for transplantation.

This medical advance was made possible by funding from Kidney Research UK, Northern Counties Kidney Research Fund and the National Institute for Health Research (NIHR).

Brian, from Washington, said: “I was the first patient at the Institute of Transplantation to receive a kidney using the perfusion technique.

“I’m feeling really well and full of life. I’ve had no complications following my operation and I’ve not had any rejection of the organ. [Read more]

From Channel 9, ABC local affiliate, Whitfield County, GA, BY SARAH JENNINGS

Scotty Ownbey - First $500 Recipient Pays it Forward

Pay it Forward reaches another exciting milestone!

Since the weekly segment started on Monday nights at 6, nearly three years ago, NewsChannel 9 along with the McMahan Law Firm have awarded YOUR hometown heroes with $78,000!

This week's story unfolds at Miracle League of Whitfield County where Scotty Ownbey, our original $500 Pay it Forward recipient, shares a true miracle that's been in the making since our very first episode aired on June 3rd, 2013.

Scotty's story has come full circle since we last met at his job in Dalton. He was at the center of the big surprise from a co-worker who recognized his incredible optimism, loyalty and perseverance despite a hereditary kidney condition called polycystic kidney disease.

Almost three years later Scotty shouts "hello" from across the Miracle Field parking lot and it's hard for me to hold back my elation.

He tells me how he continues to work at the same job with his same great colleagues, but struggles more physically as his search for an organ donor has continued.

Polycystic kidney disease claimed his mother's life and now threatens his own.

After many failed attempts Scotty is excited to share the news that he recently found a donor in an unlikely place, his goddaughter's father.

"He and I have been friends for 14 years and he's my match!"

Scotty's talking about Evan Bailey, or Bailey, as he's known by friends.

"It's a true blessing from God that Bailey's in my life and I can't help but think that this is why," Scotty says.

Scotty is getting a second chance at life and a chance to fulfill the vow he made when Bailey's 11-year-old daughter, Trinity, was born.

"I know he knows how grateful I am because we've talked about Trinity growing up and who knows what she'll become, but now I'll get to find out."

Bailey and Trinity are on their way to Miracle Field where they know we're following up on Scotty's journey, but have no idea why we're all really there. [Read more]



From India Today, by Nikita Bhalla

World Hypertension Day: Everything you need to know about the condition

Along with being at a high risk of heart diseases and diabetes, you are also prone to hypertension, courtesy today's high stress levels and sedentary lifestyles.
Hypertension--the silent killer--is a medical condition that often remains undiagnosed until relatively late in its course. Affecting one billion people worldwide, the condition can be explained as, blood pressure levels exceeding 140/90mm Hg.

About 90 per cent of hypertension cases have no known cause and are triggered by a host of factors, including a genetic predisposition, high stress levels, poor dietary habits, obesity and a few other health issues.

It is estimated that the number of hypertensive adults will increase from 972 million in 2000 to 1.56 billion in 2025, leading to a rise of about 60 per cent--out of which, around 10 per cent of the population suffers from secondary hypertension--caused by a pre-existing disease.

SYMPTOMS

Dr Harish KV, managing director, General Medicine, Apollo Clinic, Bangalore, shares six insights that may indicate hypertension:
Severe headache
Blurred vision
Breathlessness
Fatigue and sleepiness
Nausea
Nose bleeding

Discussing the symptoms and the disease's discovery, Dr SK Agarwal, senior interventional cardiologist, Kailash Hospital and Heart Institute, Noida, says, "Routine screening for secondary hypertension is not required unless one of these symptoms is present--blood pressure greater than 180/110 mm Hg with its onset below the age of 25 or after 50, a family history of polycystic renal disease and/or enlarged palpable kidneys, suspected renal disorder, high blood pressure that does not respond to medication and a combination of headaches, palpitation and perspiration."

He adds, "Women on birth-control pills who are over the age of 35, obese and/or smoke must also be educated about their heightened risk of secondary hypertension."

Speaking about the same, Dr Manoj Kumar, associate director & head, Cardiac Cath Lab, Max Super Specialty Hospital, New Delhi, says, "There are various diseases like diabetes, thyroid, polycystic kidney disease, aortic narrowing, sleep apnea and obesity that cause secondary hypertension. High blood pressure may also be a side effect of medication, such as hormonal contraceptives and non-steroidal anti-inflammatory agents. Timely intervention can control both the underlying cause and the high blood pressure caused due to secondary hypertension, thereby reducing the risk of serious complications, including heart diseases, kidney failures and strokes." [Read more]

PKD Research

From Genome Web, by Ciara Curtin

Whole-Genome Sequencing Has Better Dx Rate Than Exome at Similar Cost, Australian Team Finds

Researchers at the Garvan Institute of Medical Research in Australia said last week that they can diagnose rare, monogenic diseases more than half the time using whole-genome sequencing.

According to Mark Cowley, who presented the work at the Biology of Genomes meeting at Cold Spring Harbor Laboratory last week, this diagnostic rate is much better that the 25 percent rate typically observed with whole-exome sequencing.

His lab is currently undergoing an assessment by the Australian National Association of Testing Authorities — similar to CLIA certification in the US — to offer clinical whole-genome sequencing to diagnose patients with rare genetic disorders. It has already used this approach to diagnose patients with autosomal dominant polycystic kidney disease, hereditary spastic paraplegia, and other disorders.

"Ultimately, the goal we are trying to achieve here is to start off in a clinical environment with patients and their families seeing clinical geneticists, being counseled for the test, going through sequencing, bioinformatics, and clinical interpretation [to produce] a clinical report," Cowley said. "Hopefully, this clinical report returns a positive diagnosis for the patient … and improves the clinical management of that patient."

While whole-genome sequencing picks up coding and structural variation that exome sequencing may miss, clinicians and researchers often turn to exome sequencing because of the reduced cost. In the US, Cowley noted, a genome sequence could cost three times as much as an exome sequence.

However, Cowley said that because of Illumina's pricing strategy, the difference in cost between whole-genome sequencing and whole-exome sequencing is smaller in his lab than in others.

Institutions that run a lot of exomes, he noted in an email to GenomeWeb, have stronger buying power and, because of that, their reagents, and thus exomes, are cheaper than at other, lower-bulk institutions.

PKD Awareness

From News Dispatch, LaPorte, IN, By MATT CHRISTY

Car enthusiasts go Cruis'n for a Cure for PKD

Photos by Matt ChristyClassic cars cruise down Ind. 2 Sunday afternoon as part of the 40-mile Cruis'n for a Cure for PKD.

The cruise with a cause returned Sunday to the La Porte County Fairgrounds where the 8th Cruis'n for a Cure for PKD brought together car enthusiasts and owners in an effort to raise money toward research for the genetic kidney disorder.

Polycystic kidney syndrome is a genetic disease one in 500 Americans are born with, said organizer Laura Moyer, who knows the cost of the disease firsthand as she not only was born with PKD herself, but comes from a family where 15 people have been diagnosed with the disease.


PKD is one of the most common life-threatening diseases with more than 12.5 million people worldwide having the genetic disorder. The disease causes cysts to form on both kidneys, which eventually leads to the organs shutting down and a transplant needed to survive.


"The kidney is your livelihood in your body. It does a lot of functions. Once that shuts down, you either have to have dialysis or get a transplant," Moyer said.


Moyer, who serves as the volunteer chapter coordinator for the Northern Indiana Chapter of the PKD Foundation, has lost aunts, her grandfather and her mother to PKD, only spared herself thanks to a kidney donation made possible by her husband.


"My husband donated (his kidney) so I could get a kidney," Moyer said, the donation part of a kidney chain. "He wasn't my blood type, but because he was able to give a kidney it guaranteed I would get a kidney."


On Sunday, more than 50 cars lined up around the fairground's lawn despite the cold weather and strong wind. From 1956 Ford Thunderbirds to Lotus's to brand new Dodge Chargers and even military Hummers, the variety was on display as the cars rolled out from garages and from beneath covers to gleam in the sun, even if the owners had to warm up by sitting inside for a bit.


"Everyone is itching to get their vehicles out," Moyer said. "They've been sitting all winter."


With last year attracting around the same number of vehicles despite having better weather, Moyer was happy to see so many of the same faces back to support the fundraiser.


"A majority of these people come every year to support this fundraiser. I'm very appreciative of that. They know what it's for and I'm always thankful they come back," Moyer said.


After the car show, vehicles took off down Ind. 2 where they went on a 40-mile cruise around the county to end back where they began.


Thanks to sponsors like Root Funeral Home, Meijers, Family Express, the VFW and the La Porte County Fairgrounds, all the food, drinks and cost were covered, letting 100 percent of the money raised from the car show and cruise go toward the PKD Foundation as a cure continues to be sought for the disorder.


"It takes things like this to raise awareness not just for PKD, but for organ donation," Moyer said. "That's what it's about, that organ donation and saving lives."


To join the search for a cure, check donations can be made out to the PKD Foundation and sent to 3178 S. 150 West, La Porte, IN 46350.

From Michigan City LaPorte IN Events

Walk for PKD

Saturday, September 17, 2016
9:00AM - 11:30AM

Northern Indiana Walk for PKD – 2-Mile Walk Sat, Sept 17, 2016. Check in 9am; Walk 10am at Creek Ridge County Park – Michigan City, IN. For more information, please contact Walk Coordinator,northernindianawalk@pkdcure.org. Polycystic Kidney Disease (PKD) affects thousands of Americans and 12.5 million children and adults, worldwide. There is no treatment or cure, but there is hope. Walk, form a team, help with the committee, volunteer and more! Register online and take advantage of a host of effective and Free online team features like emailing members, tracking team progress and fundraising tools. Contact the PKD Foundation for more information on how you can help.www.pkdcure.org. Come join us.www.walkforpkd.org/northernindiana.

Contact

Laura Moyer
northernindianawalk@pkdcure.org
219.878.3062

Race Against PKD; Harvest My Kidney; Cruis’n For a Cure For PKD; Transplant Chains Offer New Life

Racing Against PKD

From Bowling Green Daily News, by Simone Payne
Inaugural race set for Memorial Day

Polycystic kidney disease has run in Ryan Dearbone's family for years and he decided a year ago that he wanted to raise money and awareness for research to cure the disease the best way he knew how: through a race.

Dearbone is hosting the first Jackrabbit Jog 5K & Relay at 8 a.m. at Kereiakes Park on Memorial Day in memory of his mother, Alfreda Thompson, who passed away April 9 from heart issues that were a direct effect of PKD, he said.

"It was already something I was involved in and wanted to help because of my family," Dearbone said. "Now that my mom has passed away it's become my mission. PKD doesn't affect everybody, but for those it does affect, it affects us in a big way."

PKD is a genetic disorder that causes numerous cysts to grow in the kidneys. PKD cysts are different from the usually harmless “simple” cysts that often form in the kidneys later in life. PKD cysts are more numerous and cause complications, such as high blood pressure, cysts in the liver and problems with blood vessels in the brain and heart, according to the National Institute of Diabetes and Digestive and Kidney Diseases.

Dearbone's wife, Bonita, said she was excited when her husband told her he wanted to host a race to raise awareness for PKD in memory of his mother.

"That was his goal because not a lot of people know about PKD," she said. "Just to bring awareness out to people that was more exciting than anything. After his mom died, it's put on a new meaning."

Through his many roles in serving the community by being on the City Code Enforcement and Nuisance Board, Chairperson for the MLK Jr. Day Planning Committee and communications chairperson for the NAACP, Dearbone was able to secure several sponsors for the race including Franklin Bank and Trust, Houchens Industries, Trax Running, Bike Rack Bistro, Papa Murphy's, Liberty Imaging, Body by Bonita, 823 Enterprises, D93 Radio, WNKY, Doug Frint of RE/MAX, Road ID and the PKD Foundation.

Bike Rack Bistro owner Patrick Folker has been good friends with Dearbone for many years and knows how close he was to his mom. Folker had never heard of PKD and definitely thinks the word needs to get out about this disease, he said.

"Ryan and Bonita, they’re runners and they’re known locally for running and I think it’s just a part of Ryan," Folker said. "5Ks are really popular and it’s just fitting that he would put on a 5K to raise awareness for PKD."

Participants can register for the run/walk online at the Jackrabbit Jog 5K facebook page by clicking on the active link in the "about" section or wait to register in person the day of the race for $30 or $80 for a four person 5-mile relay. The price includes a T-shirt and a chance to win several door prizes such as a suite for a BG Hot Rods game for a group of eight, gift cards from ROAD ID, two free memberships to Bowling Green Parks and Recreation and restaurant gift cards. [Read more]

From Herald Argus, LaPorte, IN

Cruis'n For a Cure is Sunday

The eighth annual Cruis’n For a Cure For PKD will be held Sunday, beginning at the La Porte County Fairgrounds.

“Cruis’n For A Cure is our first major event of 2016,” said Laura Moyer, event chair. “We will be cruising in cars, trucks and motorcycles – antique, new, used and unique wheels are all welcome to join us for a car show and 40-mile car cruise."

The cost is only $10 per vehicle to participate in the even. Proceeds will be donated to the Polycystic Kidney Disease (PKD) Foundation.

The Cruis'n For PKD is very dear to Coordinator Laura Moyer and her family. Laura received a kidney transplant on Dec. 9, 2011 and her sister Debbie the year before. PKD runs in their family — 15 of their immediate family have this life threatening kidney disease. That is why fundraisers like the cruise, as well as the PKD Walk each year in September, raise awareness and money for research.

The cruise is expected to have more than 500 participants. They will be able to show off their ride and enjoy the concessions available at the fairgrounds, as well as a silent auction from Blue Chip Casino, Hotel & Spa, Four Winds Casino.

A drawing will be held for prizes such as oil changes, car cleaning supplies, and many more wonderful gifts sponsored by Root Funeral Home. Dash plaques will be given to the first 100 vehicles. Judges will pick their favorite top three and a trophy will be given.

Other sponsors include the La Porte County Fairgrounds, Root Funeral Home, Scotty’s Dynamic Design, Miller’s Port-A-Pots, Starbucks, Kreamo Bakery, La Porte Chrysler, VFW La Porte Men and Women Auxiliary, The News-Dispatch, The La Porte County Herald-Argus, Harbor County News, Family Express, Meijer, Sams Club, M.C. Auto, and Blue Chip Casino, Hotel & Spa and Four Winds Casino.

Polycystic kidney disease (PKD) is a genetic, life-threatening disease that causes people to develop kidney failure, forcing them to depend on dialysis or a transplant to live. Thanks to the PKD Foundation’s critical support, the development of new drug therapies offer help and hope to the 12.5 million people world-wide suffering from the disease. One in 500 Americans have PKD.

Lineup and registration begins at the LaPorte County Fairground, 2581 W. Ind. 2 at noon and ends at 2 p.m. The cruise begins at 2:30 p.m. sharp — rain or shine — and travels 40 miles throughout La Porte County. No pre-registration is required.

Kidney Donation

From CBC News, Newfoundland and Labrador, Canada, By Jeremy Eaton

Harvest my kidney, says Picadilly farmer to friend who needs transplant

Stewart King and Nathan Dennis the morning after the transplant surgery. (Daphne King)

Stewart King needed a lot more than an extra farmhand this season. He needed a new kidney, and now he has one — thanks to a fellow farmer.

The 52-year-old Portugal Cove-St. Philip's man is the fifth generation in his family to suffer from polycystic kidney disease.

It's a disease that affected King's livelihood and forced him to sell off his all of his livestock in the last few years.

"I was really struggling," he said.

"Years ago, I didn't mind the work, I could fly through it. After I was affected with this disease, work just became too hard and I had to slow down."

Dialysis was an option, one that King had started, but he said the ultimate cure is a new kidney.
'Lifeline to a drowning man'

That's when his buddy Nathan Dennis stepped in.

Dennis is a 28-year-old farmer from Picadilly on Newfoundland's west coast, and offered to help in ways that no farmhand ever could.

He called King's wife, Daphne, and asked what she thought of the idea of a kidney donation.

"It's like throwing a lifeline to a drowning man," Dennis said she told him.

It's one thing to offer up a kidney, it's another to see if it would actually be a match.

"I guess the odds were in our favour in this particular case," Dennis told CBC Radio's On The Go.

Multiple tests later, the two were matched and the pair then travelled to Nova Scotia for the transplant.  [Read more]

From Sun Sentinel, South Florida, by Diane C. Lade

Transplant chains let strangers give kidney patients new life

Jeff West, his kidneys failing, was dreading having to quit his job and spend years tethered to a dialysis machine. But shortly before treatments even began, the Boynton Beach man received an unexpected gift — a kidney donated by a volunteer whom he had never met.

It happened through what's called a transplant chain: a set of surgeries, stacked like dominoes, that depend on people willing to literally give a part of themselves to someone they don't know.

A growing trend in kidney donation, the coordinators of transplant chains say they aim to get kidneys to more renal patients, and do it faster. They also say they can sometimes make better medical matches than through traditional one-on-one donations between friends or relatives.

They do it by signing up hundreds of renal patients and their loved ones who are willing to donate to them but are incompatible due to blood type or other issues. These programs then use sophisticated computer software to generate new donor-recipient pairs between strangers.

It's sort of like medical speed-dating. The bigger the dating pool, the better the chances for a great match. And chains involve live kidneys that have a much longer potential life span than a deceased donation.

"It can open up an option for a kidney that people otherwise might not get," said Michael Spigler, vice president of patient services and kidney disease education for the American Kidney Fund.

West's chain started in December when Heather Sherman, a 41-year-old software support technician from Jacksonville, agreed to donate to anyone in need through the nonprofit National Kidney Registry. That person ended up being a 47-year-old mother of two who received Sherman's donation on Dec. 9 at Cleveland Clinic in Ohio.

West's transplant happened a month later, at the end of the chain, when he received a kidney removed from a 53-year-old anonymous person in Atlanta and flown to South Florida.

In between was a tightly choreographed dance involving five hospitals in five states, eight recipients and donors, kidneys being flown or driven hundreds of miles — and four lives saved, or even more when you consider those successful transplants moved other people up on wait lists.

"It literally gave me my life back. It's a reaffirmation that there still is good in the world, that we can impact others in a positive way," said West, 52, still emotional four months after his successful surgery at Cleveland Clinic Florida in Weston. Sherman's kidney also was removed there.

It was the first time Cleveland Clinic Florida — one of nine Florida hospitals certified to do living kidney transplants, and one of two in the state currently affiliated with the registry — had participated in a chain. It's an emerging option for people with serious renal disease who, depending on their blood type and medical condition, could wait five years or more for a lifesaving donation.

West, who loves his job as a technical representative for a heating and air-conditioning manufacturer, said his doctors had told him last spring he would wait at least two years for an organ and probably could not work as his kidneys deteriorated.

"I accepted my career was over, although I thought dialysis would be like a death sentence," said West, who has genetic polycystic kidney disease. "Then suddenly, they said: 'We have a donor for you. Are you available in January?' I was blown away." [Read more]

PKD Awareness; Diabetes risk following kidney transplant; Bike ride to Paris; CRISPR PKD modeling

PKD Awareness

From Chicago Tribune, by Jerry Davich

Tireless advocate for organ donation finally gets 'the call'

James Myers of Gary poses with U.S. Sen. Joe Donnelly in Washington D.C. on March 16 on behalf of the National Kidney Foundation while advocating for the Living Donor Protection Act. (Handout - James Myers)

James Myers looked weary but cheerful when he returned home from an Indianapolis hospital with his little bundle of joy.

It weighed a quarter of a pound, and was the size of a fist. It's name is "Woody."

"It's a family name," said Myers, 61, of Gary.

After nearly four years of waiting and wondering, Myers finally got the call he had been praying for, hoping for, advocating for. It came on April 26.

At 11 a.m. that day, Myers posted on his Facebook page: "I just got THE call. IU says they have a kidney for me!"

This post was dramatically different from hundreds of previous posts over the past few years, many which read like this one from April 18 of this year: "My name is Jim Myers, from Crown Point, IN, and I am an ESRD patient currently on dialysis, awaiting a transplant. I am on the list. If you are interested in becoming a donor…"

I read dozens of those somber posts, each one pleading for a life-saving transplant amid other social media friends who posted about their pets, chronic gripes or daily errands. I always wondered how Myers felt while reading such nonsense, relatively speaking.

"I am a type O blood type," Myers wrote again and again to friends, followers and strangers. "All medical costs are covered by insurance and incidental costs can be worked out."

When I first met Myers in 2013, he sat quietly in a large chair inside the Fresenius Medical Center in Crown Point. He read a newspaper while his blood was artificially cleansed of waste by a whirring dialysis machine that beeped every few seconds.

With a blanket draped over his legs and a catheter connected to his chest, Myers sat patiently for hours, as most dialysis patients must do. He visited there three times a week for at least four hours each time to undergo hemodialysis, which replaces the function of his failing kidneys.

Myers suffered from polycystic kidney disease, which took the lives of several family members, including his father, he said. Though Myers was diagnosed in his younger days, his positive lifestyle choices the past three decades only delayed the inevitable.

His genetic fate caught up to him in 2012 and he had been on dialysis ever since. "I have no choice. You either submit to dialysis or you die," Myers told me that day. [Read more]

From Herald-Mail Media, Hagerstown, MD, By CRYSTAL SCHELLE

After lifetime of battling kidney disease, local man promotes awareness

In all of his 44 years, Steve Quantock never knew a time when he wasn’t sick.

Since the age of 2, Quantock has lived with polycystic kidney disease.

According to the Polycystic Kidney Disease Foundation, PKD occurs when “fluid-filled cysts develop and enlarge in both kidneys, eventually leading to kidney failure.”

Men and women, regardless of race and social level, can be diagnosed with PKD.

Although Quantock rebelled against taking care of himself as a teen, as an adult, he became an advocate in the PKD community.

When he was told he needed to start having dialysis, Quantock knew he either had to get a new kidney or PKD would claim his life.

According to the National Kidney Foundation, about 121,000 people a day are waiting for a lifesaving organ transplant, of which 100,000 are waiting specifically for a kidney. NKF also states that 13 people die each day waiting for a kidney transplant.

In Dec. 22, 2015, Quantock received the call that changed his life: A kidney match had been found.


Growing up with PKD

Quantock’s parents discovered he had PKD when he was 2 years old and was so sick that he ended up in Georgetown University Hospital in Washington, D.C., for a month.

“At that time, they were trying to figure out what was wrong,” he said while sitting in his Hagerstown home. “They just kept on doing test after test. And I finally ended up having an exploratory surgery that left me with a 9-inch scar on my belly. When they opened me up to figure out what was going on, they discovered the kidneys had cysts on them. That’s when they discovered it was polycystic kidney disease.”

According to the PKD Foundation, PKD is “is one of the most common, life-threatening genetic diseases.”

And PKD is the fourth-leading cause of kidney failure.

“More than 50 percent of people with PKD will develop kidney failure by age 50,” according to PKD Foundation.

Quantock said there are two types of PKD — dominant and recessive.

“It just so happens to be a genetic mutation in my family, so no one in my family has PKD,” he said. “No one in the past (has it), no one currently, except me. How I got it? Freak of nature.”

According to the PKD Foundation, about 10 percent of those diagnosed with PKD have no family history of the disease, and like Quantock, PKD is developed as a spontaneous mutation.

For Quantock, that meant since the time he was young, his diet had to be watched. He had to be on a low-sodium diet because he had high blood pressure, so he could not eat lunch meats, french fries or other salty foods.

He also couldn’t do the usual roughhousing boys did at his age.

“I couldn’t get hit in the stomach. I couldn’t get into fistfights — what kids do when we were little,” he said. “I couldn’t fall off my bike. Everyday things little boys got into, I couldn’t do. So it was a little strange. I tried to be normal as best I could.”

Quantock admitted that when he got older, he rebelled against the disease.

“I’ve told a lot of people, ‘Nah, I’m not going to be different.’ It was bad enough I had big, bushy red hair and I had a belly and I looked like I was nine months pregnant at 14-15 years old,” he said. “So you can imagine the ridicule I endured. I couldn’t play any contact sports. I couldn’t play football or soccer or anything like that. The only thing I was allowed to play was basketball, and even with that, I was pretty limited to what I could do. My doctors gave me a hard time about it. I played the whole way up until I got up to high school. Then when I got to high school, I stopped playing.” [Read more]

From Loughborough Echo, United Kingdom, BY ZOE HIGGINS

Epic cycle ride for kidney awareness

Dan Norcott (right) with Andy Stafford at the Diabetes Center exercise lab in Leicester General Hospital which is also used by The Leicester Kidney Care Appeal's exercise team.

Since his diagnosis at age 21, Dan’s kidney function has deteriorated so later this year his mother Jenny will donate one of her kidneys.

A MAN who is on the verge of receiving a kidney from his mother will set out on an epic 388-mile cycle ride today (Wednesday, May 4) to raise money and awareness for charity.

Dan Norcott, 41, of Wymeswold, has Polycystic Kidney Disease, the same condition that unfortunately led to the death of his father Malcolm in 2004.

Since his diagnosis at age 21, Dan’s kidney function has deteriorated so later this year his mother Jenny will donate one of her kidneys.

But before the transplant, Dan wanted to set himself a challenge.

So today, himself and friends Rich Moss and Andy Stafford will set off from Wymeswold Primary School and begin their 10-day journey to Paris.

The group are raising money for The Leicester Kidney Care Appeal and donations totalling more than £6,700 have already been received on their online JustGiving page.

And to raise awareness of their fund-raising efforts, Dan has even created a comic strip with the help of Terry Wiley which tells his story.

Dan told the Echo: “Training is going well - I’m going 18-20 miles a day and getting fitter all the time.

“I remember my dad cycling around the coast of England and since then I have always wanted to go on a big bike ride.

“This challenge is about raising money to help develop treatments and therapies. Without this transplant, which comes on the back of previous breakthroughs, I’d be dead by 43.

“The most important things I want to get across are:

• If you’re ill, especially with kidney failure, you can still do exercise - unless your doctors tell you otherwise;

• If you don’t think you’re as fit as all those people you see doing exercise, it doesn’t matter - just do what you can and you’ll surprise yourself;

• If you do do exercise, you’ll fell less ill, be happier, and any operations you need are more likely to go well;

• Kidney transplants are way way way better than dialysis, because dialysis makes you feel like hell, and causes heart problems - so register to become an organ donor.”

Polycystic kidney disease is a genetic disorder characterised by the growth of numerous cysts in the kidneys. Dan, who lives with his wife Ali and son Arthur, was diagnosed with the condition aged 21.

The Leicester Kidney Care Appeal charity is funding vital research enabling more answers to be found to better support people with kidney disease.

To keep up-to-date with the team’s progress and donate, visit:http://pedallingtoparis.com/blog/

Transplant Issues

From MedPage Today, by Parker Brown

NKF: Kidney Transplant Patients Face Diabetes Risk

BOSTON -- Patients with autosomal dominant polycystic kidney disease (ADPKD) seem more likely to develop new-onset diabetes after transplantation, researchers reported here.

Based on a meta-analysis of data from 12 separate studies, the risk ratio of new-onset diabetes after transplantation was 1.92 (95% CI 1.36-2.70), according to Wisit Cheungpasitporn, MD, of the Mayo Clinic in Rochester, Minn., and colleagues.

However, some of the included studies did not control for confounders, the authors noted in a poster presentation at the National Kidney Foundation meeting.

When those studies were excluded, the pooled RR was 1.98 (95% CI, 1.33-2.94), they reported.

The authors also pooled three studies to look at the relationship between ADPKD and risk of requiring insulin treatment new-onset diabetes after transplantation, but found that the association was not significant (RR 1.57, 95% CI 0.75-3.27).

"The findings of this study may impact clinical management and follow-up for ADPKD patients after kidney transplantation," they wrote.

They explained that evidence for the link between ADPKD and new-onset diabetes after transplantation has been conflicting, but the incidence of new-onset diabetes after transplantation in these patients is on the rise, range from 7% to 46%.

"It has been proposed that insulin resistance genes co-transmitted with polycystic kidney disease 1 and polycystic kidney disease 2 mutations may interfere with insulin secretion and hepatic gluconeogenesis," they wrote. In addition, evidence suggests that ADPKD patients with normal kidney function have increased insulin resistance.

The analysis comprised 1,379 patients with ADPKD and a total of 9,849 patients who had undergone kidney transplantation. Only studies that reported relative risks, odd ratios, or hazard ratios for the risk of new-onset diabetes after transplantation for patients with ADPKD were included. The risk ratios in the analysis were determined using a random-effect, generic inverse variance method, the authors explained.

They pointed out that other risk factors for developing diabetes after transplantation include obesity, hepatitis C virus, cytomegalovirus infection, impaired fasting glucose, and ethnicity. In addition, patients using corticosteroids or calcineurin inhibitors also have higher risks. [Read more]

PKD Research

From The Scientist, By Tanya Lewis

With CRISPR, Modeling Disease in Mini Organs

Organoids grown from genetically edited stem cells are giving scientists a new tool to screen drugs and test treatments.

Traditionally, gene therapy efforts have attempted to treat genetic diseases by modifying DNA inside a patient’s body, but it has been a challenge to deliver the genetic material to all the target tissue, let alone to do so safely. But in recent years, advances in gene editing and stem cell research have enabled scientists to correct genetic defects in a patient’s own cells and grow tissue-specific “organoids” in vitro. These mini organs hold promise for modeling disease, screening drugs, and—potentially—replacing defective tissue in patients.

Advances in CRISPR/Cas9 gene-editing have enabled researchers to easily and accurately make genetic modifications to human DNA. Meanwhile, the ability to reprogram cells into induced pluripotent stem cells (iPSCs) and other advances in tissue engineering have enabled scientists to grow a range of different tissues, including mini guts, kidneys, and brains.

“Both the CRISPR technology and organoid technology are relatively recent developments,” Benjamin Freedman of the University of Washington told The Scientist. “Genetics is making it possible now to understand—on an individual basis—where a disease is coming from. Combine that with the ability to go to a specific place that’s causing disease and correct it and put that tissue back into a patient, and you have a really powerful combination of tools.”

Hans Clevers, a molecular geneticist at Utrecht University in the Netherlands, is one pioneer of these efforts. His lab uses adult stem cells from the gut, which, unlike other tissue, are constantly renewed. “Our technique is the only one to directly grow organoids from [patients’] tissue,” without having to first convert the cells to iPSCs,” he told The Scientist.

In a 2013 study, Clevers and his colleagues cultured intestinal stem cells from patients with cystic fibrosis. The condition is caused by a defect in the cystic fibrosis transmembrane conductor receptor (CFTR) gene, which leads to a build-up of thick mucus in the pulmonary and gastrointestinal tracts.

In organoids grown from of healthy individuals, adding a substance called forskolin led the tissue to swell, whereas it did not have this effect in organoids grown from patients with cystic fibrosis, Clevers’s team found. Next, the researchers corrected the defect in cells from the cystic fibrosis patients using CRISPR/Cas9 and homologous recombination, and grew the resulting cells into mini guts. Unlike tissues grown from untreated cystic fibrosis patient cells, the CRISPR-modified organoids swelled up normally in response to the addition of forskolin.

But Clevers’s work isn’t confined to modeling simple genetic diseases. In a 2015 study, he and his colleagues used CRISPR on intestinal stem cells to introduce mutations in several genes linked to colon cancer (APC, P53, KRAS, and SMAD4), and cultured the tweaked cells into organoids. When the researchers transplanted the organoids into mice, the tissue developed into tumors that resembled invasive carcinoma.

Meantime, Sara Howden of the Murdoch Childrens Research Institute in Australia and her colleagues are using CRISPR to develop kidney organoid models. “It’s not a full organ, but it’s a lot more relevant than a flat, 2-D culture of cells,” Howden told The Scientist. “That’s the way field is going.”

Organoid models could be useful for screening candidate drugs, at a scale that’s impossible in human clinical trials or even animal models. Because diseases affect each person differently, this approach could allow scientists to figure out which drugs have the greatest chance success in a particular patient.

Further down the road, it may even be possible to take organoids grown from patient cells that have been edited to correct genetic defects, and re-implant them into the patient to treat diseases like cystic fibrosis.

Washington’s Freedman and his colleagues have developed a way to grow kidney organoids from patient-derived iPSCs, which they use to study diseases like polycystic kidney disease (PKD), which causes balloon-like cysts to grow on kidneys, displacing healthy tissue. His lab uses CRISPR to introduce PKD-associated mutations into kidney cells in vitro, and then grows the cells into kidney organoids that form the cysts characteristic of the disease. [Read more]

Just Ask, No Entry Allowed, Support PKD Foundation

Need Kidney

From CBS Philadelphia, PA, By Greg Argos

Single Father Uses Unique Method In Effort To Get Kidney Transplant

NEW CASTLE, De. (CBS) — A Delaware man is in the fight of his life.

He’s using an unusual method to find the kidney he so desperately needs. Below the IBEW Local 313 sign in New Castle, sits a plea from a father of three.

“I have a hereditary genetic disease called polycystic kidney disease,” said Dave Amalfitano. He has dealt with this disease his whole life. “It’s basically where thousands of cysts grown on my kidneys and just deteriorates them.”

Amalfitano is waiting for a donor. “I’ve already had like six people try.”

Amalfitano is a single father of three and calls them his “happy handful.” He knew he had to get creative. “It doesn’t hurt to ask.”

“Right now there’s about almost 5,000 people, in our region alone, waiting for a kidney and the wait can be four to five years,” said President & CEO Howard Nathan of the Gift of Life Donor Program. That’s why Nathan says it’s so important to register as an organ donor.

“April is donate life month,” Nathan said. “What we try to do is get people to be more aware about the need for organ and tissue donation. 21 people die in this country everyday waiting for an organ transplant.”

He wishes those in need didn’t have to ask for help themselves. “More people have taken to social media to try to get attention for their need.” Nathan knows that sometimes that can lead to a perfect match for a patient like Amalfitano without many other options.
“I still got to be around a while for these kids,” Amalfitano explained. “I’m 46. I got a lot of life to live.” 

From The Sun, United Kingdom, By JAMES COX

Dad dying of kidney failure finally finds lifesaving donor - but Home Office won't let 'his only hope' enter UK

Roland Blell's dialysis costs taxpayers £30,000 a year but Border Force won't let his cousin in for transplant

He thought that was about to change when his quest to find a donor resulted in just one match - his cousin Danny Bilal.

But while Roland is originally from Lebanon but has British citizenship, his donor has been REFUSED entry because the UK's Border Force fear Danny will refuse to go home after the operation.

The Home Office have denied his application for a tourist visa despite being dad-of-one Roland's only hope.

Roland, from Eastbourne, East Sussex, said: "My cousin and I grew up together and he offered me one of his kidneys after he saw how my health had deteriorated.

"My cousin is my only hope. At the moment I am really frustrated and helpless."

Roland was born with polycystic kidney disease, which has worsened as he got older.

Being on dialysis for nine hours a day meant he lost his job working in insurance.

Doctors have supported an application to bring Danny to the UK, having already spent £90,000 on dialysis.

But the Home Office recently refused permission saying there was not sufficient evidence he would return home afterwards.

His consultant Dr Neil Iggo at the Sussex Kidney Unit in Brighton has written to the Home Office supporting the application for a visa.

Renal welfare officer Lee Hamilton said: "Mr Bilal will be engaged in a wonderful and selfless act of donating an organ to our patient so that Roland Blell can have continued life; free from renal replacement therapy (dialysis).

"It is essential he be allowed to travel to the UK for him to engage in our pre-transplant work programme."

Caroline Ansell, Eastbourne MP, is also fighting for the vias to be granted.

She said: "I will be meeting with the Immigration Minister, James Brokenshire, to discuss this case, which does seem to have been dealt with harshly.

"Mr Blell's cousin only wishes to enter the country to donate a kidney to help his relative in what is clearly a compassionate case, so I will be pressing the minister to look at the circumstances again.

"Everyone knows there must be rules to stop people entering the country on false grounds, but Mr Blell has provided ample medical evidence he needs a kidney transplant and that his cousin in Lebanon is the only match, so I hope something can be done quickly."

Gift of Life

From Bracebridge Examiner, Muskoka Region, Ontario, Canada, By Alison Brownlee

Kidney transplant saves Muskoka woman’s quality of life

Donna Denny was convinced her failing kidneys would irreparably change her life.

“My journey started when I was diagnosed in my mid-50s with a rare type of polycystic kidney disease and suddenly my kidneys were beginning to fail,” said Denny, a kidney transplant recipient and board member for Muskoka Algonquin Healthcare. “I was so apprehensive as to how I was going to take that life change and cope with it. I didn’t want to be dependent on other people because that’s my personality.”

She was diagnosed 12 years ago when a routine blood test showed high creatinine levels. Tests found tissue-disrupting cysts on her kidneys that prevented them from functioning and led to their slow deterioration.

She knew she would have to undergo dialysis treatments if she did not receive a transplant.
“I’m just so thankful because I think of what the alternative would be,” she said.

Both her sister and a friend wanted to donate kidneys to her, but were unable to do so. Her son, who was in his 40s, then stepped forward. After extensive testing, both went into a successful surgery. That was seven years ago in May.

“I was really scared when he wanted to do it. I’ll be honest. But he was insistent,” said Denny. “It made a world of difference to me in my life. I give thanks every day.”

She avoided dialysis because her son took the plunge and became her living donor.

“I’m just so thankful because I think of what the alternative would be,” she said.

She noted dialysis patients face either three-hour in-hospital dialysis treatments in Huntsville or Orillia three to four times a week, or nightly 10-hour treatments at home.

“That would critically change your lifestyle,” she said.

She said her surgery and recovery has allowed her not only to continue living at home, but also spend time with her grandchildren and contribute to her community as a volunteer.

“I can’t tell you what a difference it made in my life,” she said. “By being a donor for any organ, you are giving a gift that no amount of cash can purchase for a person. It’s a gift that only a caring human being can give. It is enhancing someone’s life so they can contribute to other people and their community.”

And it saves the health system hundreds of thousands of dollars each year.

Denny said her surgical transplant cost about $23,000, and there are ongoing costs for medical maintenance and medications.

Dialysis, on the other hand, costs the health system about $60,000 a year per case.

She encouraged people to learn more about living organ donation, while also urging those considering post-mortem organ donation to speak with their families beforehand about their decision, as some family members may opt their loved ones out of organ donation when the time comes.

Find more information at beadonor.ca/mgola.

PKD Foundation Support

From CrowdRise.com

PKD FOUNDATION NYC MARATHON 2016

KIM MORONEY'S FUNDRAISER:

BENEFITING: PKD Foundation

ORGANIZER: PKD FOUNDATION

EVENT: 2016 TCS NEW YORK CITY MARATHON