Sunday, August 30, 2015

Artificial Kidney in 2017?; Seeking and Receiving Gift of Life; Walk to Support Life

Artificial Kidney

From KSL-TV, Salt Lake City, Utah, By Heather Simonsen
V


Ed Timmerman is hooked up to a portable dialysis machine every night. He is one of the 1.5 to 2 million people worldwide suffering from end-stage renal disease.

"In the middle of the night you'll get these horrendous leg cramps and you've got to get up and stomp around the room," said Timmerman, a father and grandfather who lives in Ogden. "It's a mental trip knowing you're tethered to that machine."

His trips to Alaska are much harder and less frequent. Staying out late is impossible.

"It's kind of like the bewitching hour — Cinderella. You've got to be back or you play havoc the next day," he said.

Timmerman lost a kidney to cancer. His other eventually failed. He's been on the transplant list for three years. Patients can wait for a kidney from 3-8 years, but most die waiting.
First you have to be put on the wait list which can sometimes take a couple of years on top of that, so some patients are waiting half a decade or a decade for a kidney transplant.
–Dr. Jeffrey Campsen, transplant surgeon

"First you have to be put on the wait list which can sometimes take a couple of years on top of that, so some patients are waiting half a decade or a decade for a kidney transplant," said Dr. Jeffrey Campsen, a transplant surgeon at University Hospital.

Dialysis is a temporary solution and only does 10 percent of the kidney's functions.

"It completely drains them, so almost every other day four hours of their day is gone on dialysis and then they feel miserable afterward," Campsen said. "It keeps them alive, but their quality of life is terrible."

Scientists at the University of California at San Francisco say they have an artificial kidney that works in the lab. It's a small implantable device with super efficient membranes that filter toxins from the blood without pumps or electrical power. That would mean freedom for patients in renal failure.

"What we are trying to do is mimic the natural kidney," said Shuvo Roy, a scientist at UCSF.

The device is the size of a coffee cup. It takes the blood, processes it, and generates a waste fluid like urine, Roy said.

"The device is able to provide the functions of a kidney, and we hope when it's ultimately developed it will be a permanent implant," he said.

Patients also won't need immunosuppressant drugs, causing fewer side effects and less risk of infection, researchers said.

"Can you make something that's plastic that's as good as a human organ?" asked Campsen.

Though questions remain, Campsen said the potential for saving lives is incredible.

"I think over a 10-year period, millions and millions," he said.

It's expected to save lives and improve them.

Timmerman longs to enjoy the simple pleasures of life again. "Stay out late once in a while, go to a movie or something and come home at midnight," he said.

He would also like to visit Alaska — the place he loves most, more often. Now he has to haul his portable dialysis machine, the size of a fax machine, with him.

Scientists at UCSF have begun animal testing. If all goes well, the first human implant will be at the end of 2017.




Seeking Gift of Life

From Kokomo Perspective, Kokomo, Indiana, by Alyx Arnett

Williams family continues search for kidney

kidney

Next month marks one year since Jeremy Williams was placed on the national waiting list for a kidney transplant and given an approximate wait time of four to five years.

Meanwhile, his condition isn’t getting any better.

“I am literally begging people to get tested to see if they’re a match [to donate a kidney to him],” said Jenni Williams, Jeremy’s wife.

Jeremy has polycystic kidney disease (PKD), an inherited disorder in which clusters of cysts develop primarily within the kidneys. The cysts contain water-like fluid and can grow very large as more fluid accumulates.

Currently, the cysts on Jeremy’s kidneys have grown so large that his abdomen is protruding.

“His kidneys take up half his abdominal cavity, which that’s a huge area, and it’s pushing his organs where they’re not supposed to be,” Jenni said. “Your kidneys are supposed to be about the size of your fist. His are pretty much the size of babies.”

Many of Jeremy’s friends and family members have been tested to see if they’re a match, but so far, they’ve all been rejected for varying reasons, such as high blood pressure, diabetes, or weight.

Eager to find someone who can help her husband, Jenni turned to Facebook, asking her friends to consider being a living donor. A blood type A or O donor is needed. Jenni said at least four people—strangers, in fact—have reached out to her, inquiring about the process.

Starting last week, she began attending a three-part living donor program to better inform herself about the process of someone becoming a living donor in order to better answer questions people have for her.

“They’re giving us information on how to talk to potential living donors because some people are worried about the cost to them if they are a living donor. The living donor, it doesn’t cost them anything. The surgery itself doesn’t cost them. Anything with testing doesn’t cost them. The only thing it would cost them is lost wages at work, and sometimes that would fall under FMLA (Family and Medical Leave Act),” Jenni said.

Those who are interested can fill out a form at iuhealth.org/forms/living_donor_intake_form, and a representative will be in touch if the applicant could be a potential match.

“It’s just a simple questionnaire they have to fill out, and they can specifically put that they want to donate to Jeremy. They just have to put his name in there. There are a few health questions, and everything is completely, 100-percent confidential,” she said.

Jenni said she’s hoping to find someone in the community willing to help.

“This would mean the world to us to have him back,” Jenni said about her and their three children, age 12, and twins, age 2-and-a-half. “He would be able to get down on the floor and play with our kids, get out more, interact more, walk more.”

In another attempt to attract donors, Jenni and friend Stacey Griggs had car magnets and decals made that say “Our Daddy Needs a Type A or O Kidney Donor! 765-434-2656.”

“This is just very critical. He needs this kidney. I just don’t want him to have any more problems,” she said.

For more information, visit iuhealth.org/transplant or call 765-434-2656.




From WCPO, Channel 9, Cincinnati, Ohio, by Tony Mirones

Bethel family takes search for kidney donor to the streets

BETHEL, Ohio -- Ronald Raines' family is working to save his life.

Raines had a kidney transplant 14 years ago because of polycystic kidney disease; people with the disease get cysts on their kidneys, and as they get older, those cysts start to rupture.

Now, Raines needs another kidney.

"Surgeons told us that there's a very slim chance that they find one for him," his wife Debbie said.

So Raines' family has taken to a new trend in health care, advertising on shirts, yard signs and on the back of cars to bring awareness to their dad.

RELATED: In search for kidney, another man's yard signs pay off

"We're not just about my dad, I mean, my dad being No. 1 to me right now, we're trying to get him a kidney," daughter Melissa Lovell said. W"e're about letting people know there's so many people that need any organ."

Nationally, there are 120,000 people waiting for an organ donation; 90 percent of them need a kidney.

Even if you don't match Raines, his family still wants you to help.

"Then you say, 'If I don't match him and there's someone I can save, put me on the list,'" Lovell said.

If you are interested in becoming an organ donor, the LifeCenter Organ Donor Network serves the Tri-State; you can call to speak with a public education team at 513-558-5555.




Walk Supports Gift of Life

From Northern Life, Sudbury, Canada, by Jonathan Migneault

Kidney donation gave Sudbury woman second chance at life

Monique Larochelle visits the Kidney Foundation of Canada website ahead of the 2015 Kidney Walk in Sudbury, scheduled for Sunday, Sept. 13 at the Delki Dozzi Memorial Park. Larochelle received a kidney transplant on May 20, 2011. Photo by Arron Pickard.

Monique Larochelle visits the Kidney Foundation of Canada website ahead of the 2015 Kidney Walk in Sudbury, scheduled for Sunday, Sept. 13 at the Delki Dozzi Memorial Park. Larochelle received a kidney transplant on May 20, 2011. Photo by Arron Pickard.


2015 Kidney Walk supports people with kidney failure in Sudbury, September 13.

Monique Larochelle was given a second chance at life when she received a kidney transplant May 20, 2011.

In 2006, Larochelle was diagnosed with polycystic kidney disease, a hereditary condition that causes cysts to develop on the kidneys. The disease can eventually lead to kidney failure.

“I wasn't aware there was anything like this in the family,” Larochelle said.

Her father died when she was an infant, and her mother had lost touch with his family.

After she was diagnosed, Larochelle and her brother tracked down her father's family, and found out two of her aunts were on dialysis due to kidney failure.

Soon after her own diagnosis, Larochelle had to go on hemodialysis. She went to the hospital three times a week, and waited for four hours each visit while a machine filtered her blood. While she was on dialysis, Larochelle had to stop working, and needed to make strict lifestyle changes.

She had to limit the water she could drink each day, and even healthy foods like bananas – her favourite fruit – had to be cut back.

Larochelle was added to the kidney transplant waiting list in January 2011, and on May 20, she received a call from the London Health Sciences Centre that a kidney was waiting for her.

“I was very lucky,” she said.

Some people wait years before a compatible kidney becomes available. After her transplant, Larochelle was able to return to work as a school bus driver.

She must take anti-rejection medication every 12 hours, but said it's much better than the alternative of relying on hemodialysis to live.

On Sunday, Sept. 13, Larochelle will join her friends and family for the 2015 Kidney Walk at the Delki Dozzi Memorial Park.

The walk supports the Kidney Foundation of Canada, which works to improve the lives of all people affected by kidney disease through research, government advocacy, peer support, education and various programs.

Forty-one communities across Ontario will host similar walks throughout September and October.

To register for the walk, visit www.kidneywalk.ca.

The Sudbury walk is scheduled to start at 10 a.m.




Sunday, August 23, 2015

Inexpensive Portable Dialysis Works; Mystery, Music Fundraising; Finding Kidneys; Selfless Devotion; Donate Life

Dialysis Innovation

From CTV News Monteal

Teen invents portable, low-cost dialysis machine

What started off as a science project may have a revolutionary impact for dialysis patients.

Montreal teenager Anya Pogharian has received international attention for a portable dialysis machine she created for a local science fair.

“I wanted to mimic the exact same circuit as a dialysis machine because I'm trying to see if the cost can be reduced while maintaining the functionality,” explained the teen inventor, who has spent well over 300 hours on the project, even though the science fair only required 10.

Inspired after a summer of volunteering at the Montreal General Hospital, the teen said she realized that a portable system could make a major difference.

Typically used by kidney disease patients, dialysis removes waste and excess water from the blood. It can be a time-consuming process.

“Dialysis normally takes hours in a hospital setting, several times a week,” she said, adding that a portable machine could help bring the treatment to those who need it abroad. “Like for example, 90 per cent of patients living in India and Pakistan who need the treatment to survive don't have access to it. So, a lot of preventable deaths.”

She started researching the problem online and read owner’s manuals of dialysis machines to provide inspiration and insight into how to invent her own.

While dialysis machines currently cost about $30,000, her second prototype cost about $550 to build and is receiving international interest.

Hema-Quebec approached her with an idea to test it in their Quebec City lab. The results were impressive.

“We were expecting to run the system for 2.5 hours and after 25 minutes (the patient) was already in the zone where we wanted the level of potassium to be, so the system was quite efficient,” said Yves Blais, vice-president of research and development for Hema-Quebec.

They've invited Pogharian back to test her third prototype when it's ready.

As she prepares to start her last year of CEGEP, Pogharian has a few projects on the side, including giving a Ted X talk and collaborating with a Harvard professor.

Developing her project is always top-of-mind, though.

“I just found it interesting, just really interesting and I saw there was a need and I figured, ‘Why don't I try something?’” she said.




PKD Fundraising

From Enid News, Enid, Oklahoma By Cass Rains

Murder, mystery on the menu at fundraising dinner

Tickets are available for a fundraising dinner theater event set for October.

Oklahoma City's theater group Whodunit Dinner Theatre will perform "Win, Lose or Die," a murder mystery story about a group of Oklahoma hillbillies that win the lottery.


The dinner is a whole hog roast with sides. A chicken option is also available. The event at Function Junction, 800 W. Broadway, will also include an auction.

Tickets are $60 per person and attendees are encouraged to "get gussied up in their hillbilly best. The dinner begins at 6 p.m.

The dinner will benefit Enid resident Melissa Thomas, who must raise $20,000 for a kidney transplant.

Four years ago, Thomas was diagnosed with polycystic kidney disease and told she would need a kidney transplant.

The disease causes the kidneys to swell, and because the kidneys control so much in the rest of the body, it causes multiple complications, such as liver cysts, heart problems and brain aneurysms.

Last July, Thomas was referred for a transplant. Because polycystic kidney disease, or PKD, has no cure, it is the only way to save her life.

Before she can receive a transplant, Thomas must raise $20,000.




From Sonoma-Index Tribune, BY JAMES MARSHALL BERRY



Lisa Flores Buffalo will carry on the PKD awareness campaign launched in 2009 by the late Norton Buffalo.

Polycystic Kidney Disease, and a cure for it, has become a cause lately for several local musicians, some no longer here with us.

PKD causes cysts to grow in the kidneys, eventually leading to kidney failure, at which point a person would need dialysis or a transplant. PKD is one of the most common, life-threatening genetic diseases, affecting thousands of Americans and millions worldwide. At this point in time, there is no treatment or cure for this disease.

In 2009, the late Norton Buffalo, along with several musician friends, participated in a night of music to bring awareness and educate the public about Polycystic Kidney Disease, a disease his close friend, Doug Graham had inherited. Graham continues his efforts to educate the public about PKD and is hosting a concert at Studio 35 on Sunday, Aug. 23, kicking off at 1 p.m., which features a show with some of his former bandmates, including Dave Aguilar, Lisa Flores Buffalo and David Brown.

Local singer-songwriters Theresa Stoops and Jim Brumm will also be playing some of their original songs.

There will be information available to help educate folks about the PKD Foundation’s research, education, advocacy, support and their annual “Walk for a PKD Cure,” which will be held on Sept. 26. You can sign up to participate on your own or be on Doug Graham’s team, “Team Penguin.” Sonoma’s Alcadessa Marcie Waldron will also be at the event to share information about her “Got the Dot” campaign to get a thousand Sonomans to put the pink dot on their license, to donate organs, and life, to others.

The event is free but donations are encouraged. Studio 35 is at 35 Patten St. in Sonoma. For more info, point your browser to studio35sonoma.or call Doug Graham at 334-5472.




Living With PKD

From Alberni Valley Times, British Columbia, by Kristi Dobson

Woman struggles to find a live kidney donor

As her kidney health continues to diminish, Sandra Thomas waits to see if a matching live donor can be found for her.  - Kristi Dobson, Times

As her kidney health continues to diminish, Sandra Thomas waits to see if a matching live donor can be found for her.
— Image Credit: Kristi Dobson, Times

Finding a live kidney donor has been like searching for a needle in a haystack for Sandra Thomas. When she was in her twenties, was diagnosed with Polycystic Kidney Disease, a genetic disorder that was passed down from her father.

Although she was not surprised by the diagnosis, it has recently brought about an urgent search for a donor. The disease has affected ten family members on her father's side and she has witnessed its progression firsthand.

Four year ago, Thomas' father passed away from complications of the disease which affected his heart, something she hopes to avoid.

PKD causes cysts to form on the kidneys, which fill with fluid and enlarge the organ. From there, a person can develop high blood pressure and heart disease. The kidney functions also start to decline, which can be gradual or rapid. When the kidney is functioning at 20 to 15 per cent in an affected person, a live donor transplant is an option. Right now Thomas is at 20 per cent.

"I was at 25 per cent and then all of a sudden it dropped quickly," she said.

Although concerned about her own health, she was hesitant to reach out for help.

"The hardest and scariest part was watching my dad," she said. "I learned a lot from him and I know the things I have to do to protect my heart. He could never have been a heart or kidney recipient."

Two of Thomas' four adult children have also inherited PKD.

"I was most affected when it affected my children," she said.

Now that she is seeing a rapid decline in her own kidney function, Thomas is taking a proactive approach by searching for a donor. She has two main road blocks, however.

Thomas has Type O blood and requires a donor to be Type O for a match. Even more challenging is that her body has developed antibodies to protect itself, but in turn would reject a large portion of donors in the province.

"My antibodies would attack a kidney from 64 per cent of donors' kidneys, but that leaves 36 per cent I could use, so there is someone out there," she said.

At the advice of her network of professionals at St. Paul's Hospital in Vancouver, where transplants take place, Thomas began spreading the word about her situation. She set up a Facebook page and had 16 friends and family step forward. Of the 16, only two made it through the end of the extensive testing. In the end, she found out her body would not accept those kidneys.

Thomas extended her search publicly with another online matching program and another eight people came forward.

"For now it is a waiting game but it is getting scary because my kidney function is dropping fast," she said. "It just takes time and I have to put it out there.

The alternative would be a lifetime of dialysis, which would not only affect her daily life, but employment.

"The beds in Port Alberni are full so I would have to travel or do dialysis at home," she said.

Thomas hopes to maintain her health as she waits for a compatible donor by staying hydrated and maintaining a special diet to control blood pressure.

Anyone who is blood type O and willing to undergo further testing as a match for Thomas can call the Kidney Pre-Transplant Program at St. Paul's Hospital at 604-806-9078.





From Huddersfield Daily Examiner, United Kingdom, BY NICK LAVIGUEUR



Mandy Littlewood of Longwood who has been waiting for years for a kidney transplant with her husband John Paul, son Zac and daughter Millie.

A Huddersfield mum has prolonged the agony of her own kidney disease in order to save her son.

Amanda Littlewood, 38, from Longwood has suffered with polycystic kidney disease all her adult life.

With her kidneys failing, forcing her to spend three days a week in hospital, her husband John Paul stepped forward and said he would donate one of his.

But the life-saving procedure has been put on hold after the family got the devastating news that their eight-year-old son Zac may need the surgery.

The tragic development wasn’t a total surprise as the family have a long history with the inherited killer disease.

“I got diagnosed when I was 18,” said Amanda. “But my mum, my brother and my grandma already had it.

“My mum got a transplant about five years ago and my brother had one last year.

“My husband was all set to donate one of his kidneys to me but then we found out our youngest Zac needed it.

“I said to him, hold off and see if Zac can have it.”

Amanda’s two other children, nine-year-old Millie and 18-year-old Cathan have had no problems so far but are yet to get the all clear from doctors.

But Zac, who attends Moorlands Primary School, is struggling and urgently needs the transplant.

The poorly youngster’s problems are all the worse as he also suffers with epilepsy.

Amanda said she had been surprised at how few donors there are in Britain.

Calderdale and Huddersfield NHS Foundation Trust has revealed it secured just 10 donors in 2014/15 – fewer than one a month.

“I was really shocked,” said Amanda.

“I thought there would be a lot more than that, especially now there’s a lot more information about it. [Read more]





Gift of Life

From The Irish News, Belfast, by Anne Hailes

By donating a kidney Daryl has given gift of life

By donating a kidney Daryl has given gift of life

Belfast restaurant manager Daryl Shields donated one of his kidneys

“I WENT through so many emotions but Pauline held my hand on the way into the operating theatre and then she said: ‘Are you ready’ and I looked up at her and said yes I was. Then I was looking up again and she said “It’s done, everything went really well, you’re in recovery.”

In between times Daryl Shields had donated one of his kidneys. The first anniversary of the operation was last week and he’s as fit as a fiddle and eager to talk about kidney donation.

Polycystic Kidney disease is hereditary. If one or other parent has the disease, the child has a one-in-two chance of inheriting it and certainly there’s a lot of history in this young man’s family as it has effected aunts, uncles, two siblings and his mother who passed away three years ago.

“I watched my mum on dialysis for 10 years both at home and in the Belfast City Hospital, three days a week, four hours each time so it was constant.”

Not surprising that as he was growing up it was always at the back of his mind that he too might have the potentially life-limiting condition where kidneys lose their ability to filter waste and fluid from the blood stream to form urine.

Dialysis is one answer but a transplant, when it’s successful, is the ideal. Daryl was first tested in his early 20s and is checked every few years so having two healthy kidneys was a big plus when one of his siblings needed help.

“Very private,” he told me when we talked in Flame Restaurant, where he is manager. “No names but we both appreciate that August 10 2014 was a special day and we’re both delighted that it worked.”

Donation is interesting. I was surprised to learn from Daryl’s consultant surgeon, Mr Tim Brown, that kidneys can be swapped around. For instance, if I’m sitting in Belfast and decide to donate to a patient in the City Hospital and it turns out my kidney isn’t a match, my kidney can be offered to a patient elsewhere in the UK and a kidney from that area travels to Belfast for the patient in the City.

Indeed, it can even be a three-way transaction such is the efficiency of the national paired exchange programme. Also, it’s good to hear that last year 11 people in Northern Ireland walked in off the street to offer a kidney, ‘altruistic donors’ giving the invaluable gift of life.

He said that more than 50 per cent of transplants in Belfast are from live donors, more than anywhere else in the United Kingdom and Ireland; the balance come as a result of thoughtful donors and their families donating organs in tragic circumstances.

Before the operation Daryl had a lot of tests. “The transplant team when through the procedure so I was well prepared. It was explained to me that if the operation was a success, the kidney ceased to be mine, ownership passed to the receiving patient. Also, even on the operating table I could still change my mind. So there was a lot to think about.”

It has been a traumatic time for Daryl and the family and because of the outstanding care they have experienced at the Belfast City Hospital, he has established a new charity, Donate Life.

“I want to raise the profile of transplant in Northern Ireland so I organised a ball in the Europa and our Donate Life Charity raised £25,000. Part of this money was to refurbish the family room in the City but thanks to the generosity of interior designer Adrian Bailie and his clients, all the furnishings have been donated. We’ve even found wonderful digitally printed wallpaper in restful blues and whites so it will be a very tranquil room.

"We start on Monday knowing all of the money collected will now go towards research and much needed equipment."

So, today’s the day, and it’s all a surprise for the staff and patients with Daryl leading the way.

“I want people to know about the fantastic opportunity of giving someone else a better quality of life and, without exaggeration, life itself. If anyone is thinking of donating a kidney, please get in touch with me via the hospital and I’ll be happy to have a chat.”

:: More at donatelife.co.uk or contact the Live Donor Co-ordinators at 028 9504 8293 or 028 9504 9437.

Sunday, August 16, 2015

Walking in Chicago; Transplant Clueless; Finding Kidneys; Anti-Inflammatory Properties of Turmeric

PKD Awareness

From PKD Foundation

Chicago Walk for PKD

Walk for PKD



September 20, 2015
Busse Woods, Grove 6

Registration is now open!

To learn more about the Chicago walk or to donate, click here.




Kidney Transplant

From Rockdale News, by Lisa Hetzel

A Journey Through Kidney Donation: Part 2, Testing….1, 2, 3






Once again, I was clueless. I didn't know anything about kidney disease. I just knew that my cousin was dying.

Even though dialysis was an option, Denise's doctors were concerned that she wouldn't survive very long. On top of having Celiac disease (severely allergic to gluten), she was suffering from PKD, Polycystic Kidney Disease. PKD is a genetic disease that causes a rapid, irreversible, painful, decline in kidney function. In order to start dialysis, Denise would have to add a renal diet to her already restricted food plan. In order to get on a waiting list for a kidney, she would have to start dialysis. The average wait time is 5-10 years.

Many family members were ruled out, because they carried the PKD gene. Denise's husband had been tested. Even though he was a "match," he was declined as a donor. The doctors had determined that donating a kidney might compromise his health.

So, I offered to get tested. I had no idea how little I knew.

First, the entire donor process is confidential. Every person involved is required to tell potential donors that they can change their mind at any time. No questions will be asked. Most kidney transplants are done as a laparoscopy. In other words, donors usually end up with three or four small incisions. Hospital stays average three days. The recipient's insurance covers the evaluation and transplantation costs.

For most transplant centers, there are three phases: phone contact and questionnaire, a multi-disciplinary team evaluation and a panel review.

I was surprised to learn that I wasn't too old and met many of the first phase criteria: between 18-60 years old, good health, free from high blood pressure, diabetes, cancer, kidney or heart disease. Testing is not just to see if a donor is compatible with the person waiting for a transplant. Everything is done to make sure that no harm is done to the donor. Along with my health, I was asked about my family's medical history, my support system and responsibilities.

I would need to be willing to travel for the transplant. If I wanted to have my testing done here in Georgia, it might take months. However, I was told that if I went to Massachusetts, they could arrange for all of my testing to be done in one week.

This would be a great time to interject a dramatic sign from God. Movie directors would stop all action, include a gentle tear-jerking melody. The scene would include me in fervent prayer, on my knees while angel whispered, "You're the one. Go to Boston."

That didn't happen. Quite the contrary. Many friends and family members thought that I was crazy. I don't know how to describe it, but at that point, I knew that I was supposed to go. Regardless of the outcome, I had to try.

The next step was discussing the process with my M.D., Dr. Grace Loy. I was relieved when she encouraged me to see if I was a match. Most of the requested lab information was already on file. At this point, they needed my medical history, blood type and cancer screening tests (mammogram and the ever loving colonoscopy).

All test information looked great, so I headed to Boston. My cousin, Denise and her family welcomed me into their home. We spent a lot of time catching up. After seeing her and learning about how was feeling, I was more determined than ever to be her match.

My week was slammed with appointments. It started with an orientation. The donor advocate presented a program to explain the entire process and all of the possibilities. She said that a decision wouldn't be made until the donor team met to review all of my information.

There were chest X-rays, EKGs, blood tests, and many consultations.

Along with the tests to make sure that I was physically prepared, I met with specialists to address psychosocial factors. The psychiatrist interviewed me to make sure that I was mentally prepared if something went wrong. A social worker made sure that I had enough sick days for recovery (four to six weeks) and insurance to address any needs following donation.

By the end of the week, I think that I had the most thorough exam in my life. I secretly hoped that someone would say something unofficial to let me know that I was a match. I still had a lot to learn.

The last phase of the donor evaluation is done by a panel of all of the specialists. At Massachusetts, they meet each week to review the cases. When my case came up, the panel included the social worker, transplant coordinator, nephrologist, donor advocate, psychiatrist, and donor surgeon.

I got the call in September. I was approved as a donor, I called Denise. I couldn't believe that it was happening. The transplant was scheduled for December 30.

Stay tuned for the next episode, "The transplant."




Finding Kidneys

From WFMZ-TV, South Coventry, PA, Jennifer Joas , Reporter


Elizabeth Casperite was diagnosed with polycystic kidney disease (PKD) about 10 years ago.


SOUTH COVENTRY TWP., Pa - A woman with a debilitating kidney disease reached out to the community for help and she is getting the ultimate gift. Elizabeth Casperite, 43, of South Coventry Township, Chester County was diagnosed with polycystic kidney disease (PKD) about 10 years ago. 

She says it is a genetic disease that replaces healthy kidney tissue with watery cysts. "So the normal kidney is about the size of a fist and mine are about the size of footballs now," said Casperite.

Casperite had to wait to be put on the transplant list until her kidney function was 20 percent or less. That happened in April 2013. But the average wait in the Philadelphia area is 4-5 years, so a few months later she started campaigning for a kidney. She started with her website and it grew to car decals, social media and a large sign along Route 100 in South Coventry Township. "Really anyway you can get your message out there because you never know who is going to be your match," said Casperite. 

It was through Casperite's push to the public that Maria Weaver-Hollowniczky, a total stranger, saw her story. "There are often times when we cannot help somebody and when you actually can it is incredible actually," said Maria Weaver-Hollowniczky, who plans on donating her kidney. Weaver-Hollowniczky knew a friend who had donated a kidney to a family member and thought why not try it. 

They both underwent thorough testing and found they were a good match, but not a perfect match. So, they were approved to move forward with a pair donor program. That means they will be matched with another donor/recipient pair and they will swap kidneys. There will be four donor/recipient pairs involved in their swap. "Now we have like connected families and people I do not even know across the country will have a piece of my body in them, helping them live. It is like who gets to say that. This is a privilege. It is amazing," said Weaver-Hollowniczky. 

Weaver-Hollowniczky says that it is a laparoscopic surgery, which is minimally invasive and the recovery time would entail one night in the hospital and about 2-3 weeks out of work. "They put two little ports in. I was picturing giant scars on my back. They are like no, you come out of surgery with a band-aid," said Weaver-Hollowniczky. Casperite and Weaver-Hollowniczky hope their story encourages other people to become living donors.





Kidney Health

From MENAFN (Middle East North Africa Financial Network)

Health Experts Reveal Turmeric Is An Excellent Spice To Maintain Kidney Health


Orlando FL – August 12 2015 – The pain caused by kidney stones is one of the most terrible sufferings that one could possibly experience. The kidneys play an important role in the human body and when their health is placed in jeopardy that can lead to a myriad of health problems. The good news is that there is a spice believed to be helpful to individuals who have health issues with their kidneys.

Turmeric is an excellent spice to maintain kidney health. Kidney stones which are the most common problem encountered by the organ can be formed due to consumption of soft drinks due to the high content of phosphoric acid. Other foods and beverages that increase the risk of kidney stones are table salt processed meat processed food tap water and sugary foods.

According to experts living an anti-inflammatory lifestyle can significantly help decrease kidney stone risk. In addition to drinking increased amounts of pure water it is also recommended to consume anti-inflammatory foods and herbs such as turmeric.

“Turmeric contains a phytochemical called curcumin that has anti-inflammatory properties” said Divine Bounty spokesperson Melissa Scott.

Kidneys work by eliminating excess fluid and wastes from the blood. They help control blood pressure create new blood cells and maintain healthy bones. It is imperative to maintain kidney health and this can be done by limiting the intake of unhealthy food and beverage items.

Turmeric has been used for thousands of years to combat disorders and complications in the liver and kidneys. It is also believed to help reduce the chance of rejection that may take place after a kidney transplant surgery. Today an increasing number of scientists are trying to validate the efficacy of curcumin in the treatment of kidney stones and inflammation.

Clinical tests also revealed that curcumin has the potential ability to reduce the formation of cysts in the kidneys or in other parts of the body. According to the researchers from the Peking University curcumin has successfully slowed down the progression of kidney cysts by 62 percent. It has also demonstrated a promising result for treating polycystic kidney disease which can result in kidney failure.

Today it has become very easy to take advantage of the therapeutic benefits offered by curcumin. There are curcumin supplements available in the market and they can be purchased from local health stores and online.

One of the most popular curcumin supplements is one that comes with a bioavailability enhancing ingredient called BioPerine. These products are believed to be more capable of delivering the therapeutic benefits of curcumin to the body ().

Sunday, August 9, 2015

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

Do You Know PKD?

From PKD Foundation

Make a Gift in Memory of Greg Spira

Greg Spira



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

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

Thank you

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




From Broadway World

Chris Six Pens I, KIDNEY: A NOVEL

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

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

And then Joe finds out he has PKD.

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

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

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

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

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

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

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

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




PKD Fund Raising

From InCumbria, United Kingdom, By Freya Findlay

CARLISLE DAD'S DELIGHT AT BRITISH TRANSPLANT GAMES PERFORMANCE

Ian Blenkinsopp photo

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

image 1

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

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




Gift of Life

From Sturgis Journal, Sturgis, Michigan, By Michelle Patrick

Two SHS grads donate kidneys

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

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

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

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

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

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

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

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

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

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




From The News-Gazette, Champaign-Urbana, IL

New lease on life

20150806-210229-pic-366020228.jpg

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, August 2, 2015

Kidney Donation Journey; Make A Wish; 1000 People on Indiana wait list; Fundraising: Gambling Pays Off & Car Shows

Kidney Donation

From Rockdale News

A Journey Through Organ Donation: Part 1, Blame it on Facebook

I hit send and gulped. What would she think? My cousin, Denise, and I hadn’t spoken in over 35 years and I just offered her my kidney. I wondered if I should delete my post. Who was I to even try to help? I’m a 53 year old single mom with a dog named Dipstick. Never mind the fact that my cousin and I live 900 miles apart.

A private message from Denise appeared on the screen, “Thanks for contacting me. I would be so grateful if you phoned my transplant coordinator to learn more.”

Within days, we exchanged phone numbers and started catching up. A lot had happened since my trip to her house in ’78. Denise stayed in Massachusetts, married and raised three wonderful kids. I moved several times, married, had a son, and divorced. I’m still learning how to juggle parenting a teen, maintaining a home and working full time.

Denise’s mom, Georgette, was my godmother and my mom was hers. Our moms were close. We lived near each other and spent a lot of time together. When I was seven, we moved away. My godparents, Georgette and Ray, maintained a close relationship through letters. Over the next ten years, we spent several family vacations together. After high school, we kept in touch through our parents.

I remember hearing the news that my aunt was in kidney failure and had to begin dialysis. She had been diagnosed with PKD (Polycystic Kidney Disease). The incurable genetic disease usually doesn’t appear until adulthood. Dialysis was hard on Aunt Georgette. She was miserable and eventually didn’t travel at all. Fifteen years later, she passed away.

No one wanted anyone else to go through that. Before my mother passed away in 2011, she made us promise to take care of all of Georgette and Ray’s kids, especially Denise.

When my dad told me that Denise was in the early stages of PKD, I was shocked. I told myself that she would be okay. Shortly after that, I was reassured that the disease was moving slowly.

A few years ago, I started following Denise’s Facebook page. I really didn’t notice anything until she posted that her husband, Peter, started testing to see if he could donate to her. There wasn’t any news for quite a while. Then, Denise gave an update. The doctors had determined that although Peter was a match, he couldn’t donate. They determined that there might be a risk to his health if he donated. The process to be approved is much more complicated than most people know. By now, Denise’s health was getting worse and she would be facing renal failure within the year.

My brother, Dan, called and told me that he had looked into testing. Even if he was a match, he wouldn’t be able to take time off to donate. He had just started to work for a company that delivered home dialysis equipment. Not being in a position to help Denise was breaking his heart.

“Did you hear? Dan said, “Dad called to see if he could be tested.” My dad is one of the most active men I know. He’s 81, travels, has a girlfriend and can bench press his own weight. He was quite disappointed that they wouldn’t even consider him because of his age.

That’s when Dan asked me about my blood type. That’s the nudge that I needed.

So, I sent my message, “Denise, I’m type 0. What do you need?”



PKD Diagnosis 

From Daily Herald, Chicago

Offer to donate kidney leads to PKD diagnosis

Amy Manelli holds her daughter Quinn while with her mom, Laurie Geiger, at the 2013 Chicago Walk for PKD.

Amy Manelli holds her daughter Quinn while with her mom, Laurie Geiger, at the 2013 Chicago Walk for PKD.
Courtesy of Amy Manelli


My name is Amy Manelli. I was born and raised in Northbrook and currently live on the North Side of Chicago with my husband and our two daughters, Quinn and Nicole.

I first learned about the PKD Foundation after attending the Chicago Walk for PKD with my family about 10 years ago. At the time, my father was dealing with the full impacts of polycystic kidney disease and I was just beginning to show the early signs.

In his late 20s, my father had been diagnosed with high blood pressure -- a typical first indication of PKD in an otherwise healthy, young individual. After years of declining kidney function, he went on to have complete kidney failure in 1997 at the age of 46.

Shortly after, I was tested to see if I would be a good match to donate a kidney for him and I discovered I had this genetic disease as well. Our family had not talked about the disease and so he had not paid much attention to it in his younger years.

However, after kidney failure and discovering one of his children had the disease, he decided it was time to become educated and find out what he could do to support the effort in finding a cure -- probably not in time for himself but hopefully for me and others.

My father was on dialysis for nine months. He later had two successful kidney transplants, the first in 1998 and the second in 2008. After his second transplant, he was feeling the best he had in many years. He always used to say that he never realized how bad he felt until he felt good again.

In late 2010, he was diagnosed with an aggressive form of cancer. After being on immunosuppressant drugs for 12 years, he passed after a short three-month battle with the disease.

Losing my dad was very difficult for me. At the time, I was also pregnant with my first child. Consequently, my perspective on life changed significantly. I decided to do all I could to support the PKD Foundation in finding a cure for polycystic kidney disease, not only for myself but for my children and for my sister, who had also been diagnosed.

Thankfully, my personal health has remained good. My kidney function has started to slightly decline recently as I move into my mid-thirties, but I still feel well and I am able to live an active lifestyle.

The Chicago Walk for PKD is not only a good opportunity for me to raise funds in support of the PKD Foundation, but it is a great chance to meet other families and friends impacted by this disease. It has been a wonderful experience to be able to share stories and memories. [Read more]





From Sea Coast Online, Portsmouth

Wish granted for 14-year-old battling kidney disease

Beth Jackson, and her daughter McKinna Porter, 14, of Dover work on painting a piece of pottery together during a party at Firefly Pottery in Portsmouth on Friday.

Beth Jackson, and her daughter McKinna Porter, 14, of Dover work on painting a piece of pottery together during a party at Firefly Pottery in Portsmouth on Friday. The Make-A-Wish Foundation presented McKinna, who is battling a life-threatening polycystic kidney disease, with a trip to Disney World with her family. Photo by Rich Beauchesne/Seacoastonline

Fourteen-year-old McKinna Porter is as selfless an incoming high school freshman can get.
Porter, a Dover resident, has dealt with a life-threatening kidney disease for her entire life, losing her father to the same disease when she was just six months old.

To combat the genetic polycystic kidney disease, Porter has to drink at least a dozen liters of water each day, while avoiding salty foods — and even that won’t keep the cysts on her kidneys from growing to the size of a football when she’s in her 30s or 40s, her family says.

After all she has been through, Porter was given the opportunity to have a wish granted by the New Hampshire Make-A-Wish Foundation.

“At first she wanted to go on a shopping spree so she could buy her siblings gifts,” said Dave Tarbox, a longtime Make-A-Wish volunteer, along with his wife Maria. “McKinna ended up deciding on a trip to Disney World, so that her whole family could enjoy it.”

After meeting Porter, you soon realize that nothing makes her happier than having her family near her and a good book within arm’s reach.

“I have more than 1,000 books on my Kindle,” Porter said. “But I want to get to 3,000.”
Porter was busy Friday afternoon at Firefly Pottery in Portsmouth, painting a ceramic cupcake along with her sisters, mother and soon-to-be step father.

“We’ve had a really tough year,” Porter said, adding that she lost both of her grandparents this year. “I wanted to do something where the whole family would have fun.”

That’s why she decided on a trip to "The Happiest Place on Earth," taking her blended family of eight with her to experience all the rides and magic.

“I’m most excited for Universal Studios,” Porter said. “My little sister has been talking my ear off about how she’s going to meet Elsa and Mickey Mouse.”

Denise McDonough, owner of Firefly Pottery, hosted the Make-A-Wish party for Porter’s family, with each of them painting different ceramics to be fired in the kiln before taking them home.

“I love this atmosphere,” McDonough said. “If you put out good stuff, you get good stuff back.”
The group of eight leaves Saturday, Aug. 15 and returns the following Friday. [Read more]





Waiting for Kidneys

From WTTV, CBS Affiliate, Indianapolis, Indiana

Nearly 1,000 on Indiana wait list for kidney replacement

Close to a thousand people are on the waiting list for a kidney, and that’s just in the state of Indiana.

One patient is Bob Bales, a 59-year-old retired machinist from central Indiana. He was diagnosed with PKD, or polycystic kidney disease in 1999. In 2003, his younger brother, Don, donated his kidney, but now that organ is failing. Bob is in desperate need of another kidney, if he’s to survive.

Dialysis, which is the process of filtering blood, keeps Bob alive today, but the process is time consuming and is literally wearing him out.

He travels to Shelbyville three times a week for the procedure and says he’s exhausted from the process. A heart problem has forced him to wear a pacemaker and now he has numbing in his feet. Time is running out for this father and grandfather.

Dr. Alvin Wee is a kidney specialist who treats Bob Bales and works both with St. Vincent Hospital and the Cleveland Clinic. He claims potential donors are frightened away from even inquiring about the procedure, because of old wives tales, like shortened life spans.

“There are multiple studies in the past and recently, which have shown that giving one kidney doesn’t make your life shorter than people who don’t donate their kidney. It’s a myth, an absolute myth,” says Dr. Wee.

Bob’s brother, Don, says donating his kidney hasn’t presented any problem to him at all. In fact he claims his life would not have been complete, if he hadn’t donated one of his kidneys to his brother. Don gets a yearly physical and monitors his health. He’s not had any health problems from his donation.

Bob Bales is one of 600,000 patients with polycystic kidney disease in this country. It’s an inherited condition where cysts literally take over a kidney. Patients have to closely monitor their blood pressure and take pain medication, but there are no cures. The only options for many patients are dialysis, which is expensive and kidney donation.

Kidney donors must meet certain criteria. They cannot have diabetes, cancer, kidney disease or hypertension. They must be nicotine free for 8 weeks prior to the operation. Donors don’t have to perfectly match a recipient’s profile.

For more information on kidney donation called the local St. Vincent Transplant Team at 317-338-2694.
 



PKD Fundraising

Romford Recorder, United Kingdom, by Hayley Anderson

Hornchurch mum’s bets fundraiser helps tackle kidney disease

Dr Kieran McCafferty and Julie Crick

A West Ham fan who had a successful kidney transplant has raised funds for hospital equipment by creating a football betting syndicate.

Julie Crick, of Hornchurch, has been inviting 30 fans of the beautiful game to predict weekly results in aid of the Royal London Hospital, where she underwent a kidney transplant 13 years ago.

Each bet costs £2 with 35 per cent of the money raised donated to the hospital and the rest to the lucky winner.

She said: “We used to make bets just as a family but as more people wanted to get involved, the bigger it got.

“It can be a lot of hard work organising it but, it’s good because instead of just asking people for money, they actually get a chance of winning some!”

The mum-of-two underwent the transplant after she was diagnosed with polycystic kidney disease and started fundraising for charities in 2012 to mark the 10th anniversary of the procedure.

Her father died at the age of 55 from the condition as well as her uncle at 42.

Three of Julie’s sisters also have the disease as does one of her children.

The Royal London Hospital will be spending some of the money donated on further research into improving survival rates of those with kidney disease.

Julie has raised more than £10,000 for different kidney research charities over 10 years.

Dr Kieran McCafferty, nephrology consultant at Barts Health NHS Trust, said: “We’re fortunate to have world-leading research teams and facilities right here at The Royal London Hospital, meaning that funds raised by people such as Julie really is helping to change the lives of sufferers.”

Julie has so far raised about £1,000 which will go towards new clinical equipment.

She said: “It is so important that we fund this vital research to better understand the many causes of chronic kidney disease, diagnose people earlier to offer help and ultimately find a cure.

“I am incredibly grateful for the brilliant care of the hospital and the wonderful life that my transplant has given me.



From The Spokesman Review, Spokane, WA

JeanieS Transplant Car Show Set

As many of you know, long-time HucksOnline commenter JeanieSpokane is trying to get a kidney transplant. In order to do, she needs to prove to the transplant center that she has the money to pay for post-transplant drugs that run from $1,500 to $3,000 over the first six months. So, JeanieSpokane and her Team Jeanie have put together a car show with prizes to raise money. JeanieSpokane explains for Huckleberries Online: "Friends of Mechanic Man (her significant other) and two other car guys on my team have come up with amazing things for door prizes and raffle prizes. One company made all my T-shirts that I will have for sale at the car show -- the "ribbon" color of kidney disease is teal -- so the T-shirt is teal with a slogan on the front to "knock out PKD" (Polycystic Kidney Disease). Another paid for all the plaques. Water was donated. Oil changes. etc. It's just fantastic to me, personally. I would have never believed this was a possibility. We held a rummage sale a few weeks ago and most of my donations came from Hucksters. It's just amazing to me!"