How to Find a Kidney Donor

Finding a Kidney Donor

From Reporter-Herald, Loveland, Colorado, By Shelley Widhalm

Gary McCormack of Loveland helps wife, Phyllis, find a kidney donor, now wants to help others needing live kidneys

When Gary McCormack of Loveland learned that his wife, Phyllis, needed a new kidney, he pulled out a restaurant napkin and started brainstorming with her.

"He told me to concentrate on keeping yourself healthy, and I'll find you a kidney," said Phyllis McCormack, who as a regular exerciser walked five miles a day until her surgery on May 15. "He was my kidney finder. He was my PR guy."

The McCormacks, both 75, brainstormed ways to find a live donor for Phyllis McCormack, who in February 2013 was told she was in stage 4 of kidney failure, caused by her lifelong condition of hereditary polycystic kidney disease, something she learned she had 35 years ago.

Polycystic kidney disease, which killed her mother and other members of her family, caused dozens of benign cysts to form on her kidneys, enlarging them over time and rendering them defunct. With a new kidney, the disease will remain but will not attack the transplant, she said.

In August 2013, Phyllis McCormack was interviewed by the transplant team at the University of Colorado Hospital Denver Anschutz Outpatient Pavilion and told she needed to get on the waiting list for a new kidney.

"How the hell do we find a kidney?" Phyllis McCormack said about their brainstorming session. "We were writing down ideas as fast as they came to us."

Finding a Donor

Their ideas centered on finding a living donor, something they were able to do within nine months, avoiding having to put Phyllis McCormack on dialysis. Now, Gary McCormack, who retired from working in marketing for Hewlett-Packard, wants to guide others through the process he went through with his wife.

"You've got to get up on your feet and find a kidney," Gary McCormack said.

The day of the napkin list, the transplant team had advised Phyllis McCormack to get on the United Network for Organ Sharing list to find a cadaver kidney, which would require a three- to five-year wait time with 115,000 people already needing one. The team informed her that finding a living donor would be optimal to speed up the process, though being on the list is required either way, Phyllis McCormack said.

"We decided to go with a live kidney, because, number one, they're more successful. They last longer," Phyllis McCormack said. "And the transplant is easier."

Following their discussion, Gary McCormack got to work right away, putting posters around town and messages in church bulletins about his wife needing a kidney. He wore a black T-shirt with white lettering every day until April 2014 when the McCormacks found a donor.

The T-shirt said "Kidney Needed Save a Life" and included a phone number to be tested as a potential donor.

"The goal of it was to have people ask, "What's your T-shirt?'" Gary McCormack said.

Gary McCormack would then explain about his wife needing a live donor, which is a relative or healthy person matched by blood type, tissue and antigens. He and their daughters weren't matches, so they had to find someone else to be Phyllis McCormack's donor.

Only one kidney is necessary in a transplant, and the kidney in the donor's body will grow larger and function for both kidneys. The kidney filters out fluids and waste that accumulate in the body.

The Final Donor

The McCormacks landed a spot on a Denver news station, and 174 people responded to their plea from the broadcast and their other efforts.

"We never, ever expected that many," Gary McCormack said.

Three potential donors were perfect matches, and one donor, who wants to remain anonymous, was nearly a perfect match and could have been Phyllis McCormack's sister, Gary McCormack said.

"She's a beautiful, loving woman," Phyllis McCormack said.

The transplant team asked the McCormacks to put together a program to help others find live donors, and the two are working out the details. They are connecting with the donors who wanted to help them to ask if they would consider donating to someone else.

Their program will include outreach, travel and education about the benefits of a live kidney and how to locate one.

"For years, I was silent about it," Phyllis McCormack said. "It's hard for me to say something was wrong and I needed help from someone else."

If interested in learning more about the McCormacks' work on finding live donors, call Gary McCormack at 667-7841.

"You need to be prepared to go to work," he said.

PKD Fundraising

From Plainsman, Huron, South Dakota, BY: SHILOH APPEL

Andy’s Road Race in honor of Harvey Gleich: Annual road race planned Saturday at Memorial Park

On Saturday, Aug. 30, Andy’s Road Race will take place in Huron with packet pick-up at the Memorial Park shelter and races beginning at 8 a.m. This year the race will honor the life of Harvey Gleich, who passed away in July. All funds raised from the race will go to the Polycystic Kidney Disease Foundation (PKD) to support others who are going through what Gleich went through.

“He was a kidney transplant patient because of the polycystic kidney disease,” said coordinator, Laurie Simons. “He had different health issues throughout his life. The reason why we decided to make the walk in his memory is because he had been a volunteer for Andy’s Race and so we wanted to do something in his memory and try and support [his] cause through the PKD foundation.”

By friends and family, Harvey Gleich was known for his healthy outlook on life and his emphasis on exercise, eating healthy and remembering to laugh, even during hard times.

“When he got sick with PKD he joined the Nordby center in 2005,” said Harvey’s wife, Peggy Gleich. “He continued to exercise and go there daily. So, I’m a nurse and I just got done with three days of 12-hour shifts and he would say, ‘You ready to go to the Nordby center?’ I would say,’Jeez, Harvey, I just got done with three 12’s in a row, my feet hurt, my body hurts. I’m so tired.’ He says, ‘You know what? I hurt a lot, too. But I get out of bed and I always feel better after we exercise.’”

Harvey would spend four hours in the gym each day, although a good percentage of that time was spent visiting with people there, according to his wife.

“He loved to talk,” said Peggy. “He was a very upbeat, positive guy. No matter what was handed out to him, he just took it in stride and he would just say, ‘Well, what do we have to do?’”

Harvey was diagnosed with PKD when he was 26 years old. He was told he could do nothing about it. He monitored his kidney functions and blood pressure and continued to exercise. He received a kidney transplant when he was in his 50s.

“It’s interesting that his doctor that diagnosed him was his doctor 30 years later doing the transplant. [Harvey] had the transplant in 2006 and he just couldn’t believe how much better he felt,” said Peggy. “He was so appreciative and he took good care of himself, eating right, exercising and everything.” [Read more]

From Borehamwood Times, United Kingdom, by Victoria Oliphant

Evening of comedy and magic to support kidney disease charity

An evening of comedy and magic will be held next month to raise money for a health chairty.

The Radlett Centre will host the evening in support of the polycystic kidney disease charity and is being organised by Joe and Melanie Arazi.

Only 30 tickets are left for the evening on September 21st, which features performances from Nick Einhorn and Ian Irving.

Tickets cost £25 and can be purchased by contacting joseph.arazi@sky.com.

From Western Telegraph, United Kingdom

Somerset cyclists raise cash for Kidney Research UK

Four charity cyclists are due to arrive in Tenby tomorrow (Sunday, August 23) at the end of a two-day ride in aid of Kidney Research UK.

Damien McCutcheon, aged 30, his 15-year-old brother-in-law, Connor Anstey; his father-in-law, Chris Anstey and his wife’s uncle, Jeremy Appleyard are planning to set off on their 180-mile ride from Radstock, Somerset on Saturday.

The Somerset riders have been inspired to raise money for the charity after the uncle of Damian’s wife and Connor was diagnosed with kidney disease in 2006, which led to kidney failure.

He was receiving dialysis four times a day until 2012, when he received a new kidney from one of his three sisters.

The gentleman, who has a holiday home in Tenby, had suffered from an aggressive form of IGA nephropathy, which affects the filters of the kidneys.

Said Damian: “There is currently no cure for IGA nepropathy or other forms of kidney disease - only life-extending treatments such as dialysis or a transplant, for which there is a huge shortage of donor organs.

“I decided, therefore, that I wanted to raise money for Kidney Research UK by taking on this cycling challenge in the hope that one day maybe a cure can be found.”

Donations to the riders can be made via www.justgiving.com.ride4kidneyuk.

21st Century Cures, Letters to Congress & Kidney Donation Economics

Seeking Action

From U.S. House of Representatives, Energy and Commerce Committee

Letters to Congress, Public Responses for 21st Century Cures

As the mother of a child suffering from PKD, a disease for which there is no cure, I urge you to seek a
path to a treatment. At present, she has kidney failure , dialysis and kidney transplant as her only hope for
survival. It is imperative that research be done to discover a viable alternative to transplantation.


As I understand, The House Energy and Commerce Committee has launched the 21st Century Cures initiative to draw attention to and close the glaring gap between the number of diseases and the number of treatments available. We would like to share our experience with you concerning Polycystic kidney disease. Our son, who is the light of our life, was adopted at the age of 4 mos. At age 23, he was diagnosed with
PKD. We have been devastated ever since. Our faith is what keeps us going. We pray daily for a cure.

As you may already know, Polycystic kidney disease (PKD) is a genetic disorder characterized by the growth of numerous cysts in the kidneys. The kidneys are two organs, each about the size of a fist, located in the upper part of a person's abdomen, toward the back. The kidneys filter wastes and extra fluid from the blood to form urine. They also regulate amounts of certain vital substances in the body. When cysts form in the kidneys, they are filled with fluid. PKD cysts can profoundly enlarge the kidneys while replacing much of the normal structure, resulting in reduced kidney function and leading to kidney failure.There is currently no treatment to slow or stop the growth of the kidney cysts that plague generations of families suffering from
polycystic kidney disease (PKD). PKD patients only remedies are dialysis and transplantation once their kidneys fail.

We implore you to help Congress move the ball forward and to give my son, and us, back our lives! We would be eternally grateful!


We need a cure or even a treatment for Polycystic Kidney Disease. (PKD).

I was diagnosed with PKD in June 1998. I was placed on a kidney transplant list in March 2011. I started dialysis in January 2013. I am 78 years old.

The cure is too late for me but I have three sons and one daughter with ages in their early 50s. All have polycystic kidney disease. They need the cure.

Dialysis keeps me alive but greatly limits travel and other activities. Dialysis and kidney transplant are costly primarily to the government. A cure or even treatments that slow disease progression would save a great deal of taxpayer and patient money. Patients could continue 100% productivity.

We need a cure for Polycystic Kidney Disease. (PKD).
[Read more]

Kidney Donation Economics

From Time Warner Cable News, Buffalo, NY, By: Katie Cummings

Man Donates Kidney to Wife, Calls for Legislation to Allow for Easier Transplants 

WEST SENECA, N.Y.--When Vincent Graber and his wife Michelle met 31 years ago, he knew she had a pre-existing condition that might some day require a kidney transplant.

"Of course I was hoping all along that the polycystic kidney disease would not be that bad with her and she would never need a kidney. But in the event she did need a kidney, it was always my hope that I would not only qualify but that I indeed would be the donor, because she means everything to me," said West Seneca resident Vincent Graber Jr.

But when that time came, Graber was rejected due to a blood pressure pill he was taking.

"I was actually rendered to tears in the office when they first told me that I would not qualify," said Graber,"I started on a very extensive exercise program. I started doing a lot of research to what are some of the things causing my high blood pressure."

He was rejected five times from donating. Finally he was able to help his wife, and they performed surgery on both of them June 26.

"Not only did I save my wife’s life, I’m sure I’ve extended my own life. So I was able to save two lives," said Graber.

The waiting list for people to receive a kidney could take years, according to the Northeast Kidney Foundation of Greater Buffalo.

"You’ve got two. God gave us two so we say share the spare. It’s such a wonderful thing to do for somebody because not only are you keeping them off dialysis, taking them off dialysis and even saving their lives," said foundation member Barbara Breckenridge

During his experience, Graber realized the process was not realistic for the working public.

"If you're the main bread winner for a family or the only bread winner for a family and you want to give your organ even to a friend, and then you find out the only thing you’re going to get is new York state disability, which is significantly lower than your full time pay and actually could receive no benefits," said Graber.

He's proposed an organ donor leave act to have employers compensate donors with wages and benefits. Vincent is waiting to hear back from state and congressional leaders. [Read more]

From The New York Times, Opinion: Alexander M. Capron, University Professor at the University of Southern California, was the director of ethics, trade, human rights and health law at the World Health Organization. Francis L. Delmonico, professor of surgery at the Harvard Medical School, is the immediate past president of The Transplantation Society.

Cover the Costs for Kidney Donors to Increase the Supply

Removing disincentives and obstacles to organ donation, rather than eliminating the federal ban on payment to donors, would be something the entire community could support.

First, to reduce the number of patients who die while waiting for a kidney transplant, the recipient’s insurance or Medicare should cover the costs that deter people from becoming donors. This would increase the supply of living kidney donors without creating a market for their organs.

These expenses include the costs of being evaluated as a potential donor, and of transportation, dependent care and lost wages during the period from predonation screening to postoperative recovery. Insurance against the risks of donation should also be provided. Medical complications may not be covered by each donor's health insurance. The death of a donor without life insurance would be a disaster for a family that has lost its source of financial support.

This cost coverage would ultimately reduce the cost to health insurance companies and the federal government because enabling patients to undergo kidney transplantation would not only extend and improve their lives but also save the cost of dialysis.

A second change would be to remove the three-year limitation on Medicare coverage of the immunosuppressive medications that are essential to prevent organ rejection. That shortsighted policy results in hundreds of patients losing their transplanted kidneys every year, forcing them to return to dialysis while they await another transplant.

A third step would be to increase the supply of organs from deceased donors by efficiently using donor consent registries throughout the country, and by recovering and transplanting more kidneys from donors after circulatory death. Additionally, about 500 kidneys are recovered from deceased donors each year in the United States and discarded even though they are medically suitable for transplantation.

Three decades of experience around the world has shown that if human organs become commodities they will always be obtained from the poorest and most vulnerable in society. The consequences of such a market-driven program are now being rejected even by colleagues in Iran, which up to now has been the only country that enabled organ sales.

Rather than proposing plans for buying kidneys, let's use our collective ingenuity to devise policies that respect voluntary living donors and the families of deceased donors for their generous solidarity with patients in need.

PKD Research

From Renal and Urology News, by Jody A. Charnow, Editor
Kidney Failure From Polycystic Disease Linked to Better Outcomes

Patients with end-stage renal disease (ESRD) due to autosomal dominant polycystic kidney disease (ADPKD) are more likely than patients with ESRD from other causes to be wait-listed for and to undergo renal transplantation, according to a new study. They also are less likely to die.

Investigators with the U.S. Renal Data System (USRDS), Minneapolis Medical Research Foundation, led by Robert N. Foley, MB, retrospectively analyzed USRDS data from 1,069,343 patients who initiated renal replacement therapy (RRT) from 2001 through 2010. Of these, 23,772 patients had ADPKD as the primary cause of their ESRD and 1,045,571 had a non-ADPKD cause of ESRD. Patients with and without ADPKD were matched according to age, sex, race, and ethnicity to compare clinical outcomes.

During 4.9 years of follow-up, the incidence rate for being listed for kidney transplantation was significantly higher for the ADPKD than the non-ADPKD group (11.7 vs. 8.4 per 100 person-years), as was the incidence rate for receiving a transplant (9.8 vs. 4.8 per 100 person-years), Dr. Foley and colleagues reported online ahead of print in the American Journal of Kidney Diseases. The incidence rate for death was significantly lower for the ADPKD patients (5.6 vs. 15.5 per 100 person-years).

The study also showed that 48% of the ADPKD patients received more than 12 months of nephrology care prior to RRT. “Considering that that ADPKD is a kidney disease for which early detection and access to specialized care should exceed most other types of kidney disease, it was disappointing that less than half the study population had received more than a year of nephrology care before initiating RRT,” the authors wrote.

The investigators observed that ADPKD differs from most other causes of ESRD because it can be detected early in life. “Hence, it has the potential to illuminate issues such as non–disease-specific interventions to prevent ESRD and patterns of nephrology care in late-stage chronic kidney disease.”

Kidney Disease

From Enid News, Enid, Oklahoma, by Judy Rupp

Kidney disease is on the rise

An increasing number of Americans, including children and adolescents, are overweight or obese. And obesity has been linked to an increased risk of kidney disease. Diabetes, another risk factor for kidney disease, is also increasing. Finally, the serious effects of kidney disease are more likely to occur with advancing age. And the percentage of older Americans in the population is also increasing.

Chronic kidney disease (CKD) usually develops gradually over a number of years, and the symptoms may go unnoticed until the final stages. But when kidney failure strikes, there is no going back. Without dialysis or a kidney transplant, the patient will likely die.


The kidneys have the task of removing waste and excess fluids from the blood; maintaining a proper balance of salt, potassium and other minerals; and regulating blood pressure. They also produce erythropoietin, which stimulates the production of red blood cells and an active form of vitamin D that is necessary for healthy bones.

Acute or sudden damage to the kidneys can occur because of a traumatic injury, a severe infection, damage from certain drugs or toxins, complications of pregnancy or severe dehydration such as that sometimes suffered by marathon runners. Although they can be serious, these short-term problems are usually detected early enough for successful treatment.

Chronic kidney disease, by definition, lasts longer than three months and can be more dangerous because symptoms may not occur or be noticed until irreparable damage has occurred.

More than 60 percent of CKD cases are caused by diabetes (both types 1 and 2) and/or high blood pressure. The tiny blood vessels in the kidneys become damaged by excess blood sugar or by the extra pressure of poorly controlled blood pressure.

Other causes of CKD include glomerulonephritis (an inflammation of the filtering system of the kidneys), urinary tract infections; kidney stones; an enlarged prostate gland, congenital defects, polycystic kidney disease and disorders such as lupus that affect the immune system. Overuse or misuse of NSAIDs such as ibuprofen or naproxen can lead to chronic kidney disease.

Symptoms include swollen feet or ankles caused by excess fluid; puffiness around the eyes; dry, itchy skin and a need to urinate more frequently, particularly at night.

One way to know about the health of your kidneys is to keep an eye on your blood pressure. Not only is hypertension a major cause of kidney disease, it is also an effect. When the kidneys are not filtering properly, blood doesn’t flow freely through the tiny blood vessels, and the result is elevated blood pressure. [Read more]

Kidney Disease Epidemic

Kidney Disease

NewsMax Health, by Rick Ansorge

Kidney Disease Epidemic: 60 Percent in US Will Fall Victim

We usually don’t give much thought to our kidneys. Most of us take it for granted that the body’s filters will continue to function as efficiently as the paper filters in our coffeemakers.

Yet, kidney disease is the nation’s eighth-leading causing of death. And it can sneak up on you before you even realize you have it.

“Kidney disease tends to be a silent disease until it’s very advanced,” says Beth Piraino, M.D., president of the National Kidney Foundation. “It’s very much associated with an increased risk of dying, particularly from a cardiovascular cause.”

You are more than likely to get kidney disease at some point, since lifetime risk is 60 percent. And once you get it, treatment options are often limited to dialysis, which requires regular mechanical filtering of the waste products in your blood, or a kidney transplant. There is a long waiting list for organ transplants.

Alert: Doctor Reveals: Why You’re So Tired


“You can be walking around and think you’re just perfectly fine, but you could have advanced kidney disease and not know it,” Dr. Piraino tells Newsmax Health.

“Then all of a sudden somebody can say that you need to go on dialysis, which can be a bit of a shock.”

Even less-severe forms of kidney disease can lead to bone disorders, anemia, and a reduced quality of life.

Although kidney disease receives little publicity compared to other major killers, experts describe it as an “exploding” epidemic.

“Most kidney disease comes from high blood pressure and diabetes,” says Dr. Piraino. “Because so many people are overweight, obese, and even morbidly obese in the United States, we have a lot more of these problems. So we’re getting more kidney disease.”

Experts agree that the toll of kidney disease can be drastically reduced with early detection.

That’s why the National Kidney Foundation has issued a new recommendation that all Americans ages 60 and older — not just those with diabetes or hypertension — undergo annual screenings that can identify kidney disease, including early-stage disease that may be reversible.

The screening is a simple blood test that is used to estimate your “glomerular filtration rate” — or GFR. A rate of less than 60 milliliters per minute may indicate kidney disease.

In general, African-Americans have the highest risk of kidney disease, possibly because they often carry a gene that was protective against sleeping sickness in Africa but now is associated with kidney disease in North America.

If the blood test shows a low GFR, a urine test can be given to check for leakage of albumin, a protein that ordinarily does not pass through the kidneys. A measurement of at least 30 milligrams of albumin per gram may indicate kidney disease.

Alert: Doctor Reveals: Why You’re So Tired


High levels of albumin – a sign of a condition called proteinuria -- are also associated with cardiovascular disease and a more rapid progression of kidney disease. [Read more]

From CBS News, By DENNIS THOMPSON

"Southern fried" diet may cause kidney damage

The types of food that many Southerners seem to prefer -- fried foods, sweet drinks and processed meals -- may be deadly for people with kidney disease, a new study suggests.

A "Southern-style" diet was associated with a 50 percent greater risk of death over a 6-year period for people with kidney disease, researchers found.

The researchers believe the death risk increases because kidney patients have an impaired ability to filter out the harmful fats, sugars and minerals contained in a typical Southern diet.

"People who have kidney disease have a harder time getting rid of a lot of the substances in these types of food that are bad for you," said study lead author Dr. Orlando Gutierrez, a kidney expert at the University of Alabama School of Medicine.

By the same token, a diet high in fruits and vegetables appears to reduce the risk of death by nearly a quarter in kidney patients, according to the study published online this month in the American Journal of Kidney Diseases.

It should be noted, however, that the study was only able to show an association between diet and the risk of death in people with kidney disease. It wasn't designed to prove that dietary factors directly caused a higher or lower risk of death.

This is the first study to identify a regionally specific diet pattern that seems to be damaging to people suffering kidney disease, Gutierrez said.

"It's well known that the Southern region has poor health outcomes in a number of different areas including stroke, heart disease and sepsis, and that the style of diet plays a role," he said.

Gutierrez and his team approached their research with the aim of looking at dietary patterns, rather than specific foods or nutrients.

"We looked to see whether certain patterns of eating correlated with increased risk of death among kidney patients," he said. "We wanted to put the spotlight on what people are actually eating, rather than salt intake or fat intake."

The researchers identified nearly 4,000 people with chronic kidney disease who had not started dialysis, and analyzed the way those folks regularly ate.

The researchers found that those who primarily ate processed and fried foods, organ meats and sweetened beverages -- all items popular in Southern diets -- had slightly more than a 50 percent increase in their risk of death during the approximately 6-year follow-up period.

The Southern diet is rich in nutrients that aren't recommended for kidney patients, Gutierrez said. For example, processed foods tend to contain lots of salt and phosphorus, which kidney patients have a hard time filtering from their bloodstream and can lead to high blood pressure and heart disease.

The same goes for the sugar loaded into sweet tea and soft drinks, which increases risk of diabetes, and the heavy doses of fats contained in fried foods.

These harmful substances may be why the southern region got its less-than-flattering nickname -- the "Stroke Belt," said Thomas Manley, director of scientific activities for the National Kidney Foundation.

"The vast majority of death from kidney disease is related to heart disease," Manley said. "If you develop kidney disease, you're much more likely to die from heart disease -- heart attacks, heart failure, stroke -- than someone who doesn't have kidney disease."

Because kidney patients who ate a plant-based diet appeared to have an improved survival rate, it stands to reason that changing your diet might help even if you already have kidney disease, Gutierrez said. [Read more]

PKD Foundation

From PKD Foundation

PKD Foundation on LinkedIn

The PKD Foundation is a not-for-profit organization dedicated to finding treatments and a cure for polycystic kidney disease (PKD). We do this through promoting research, education, advocacy and awareness. Our goal is that one day no one will suffer the full effects of PKD.

Since 1982, more than $31 million has been invested in more than 550 research, clinical and scientific grants, fellowships, scientific meetings and education programs. This makes the Foundation the second largest funder of PKD research after the National Institutes of Health (NIH).

In 2010, the PKD Foundation launched the integrated research initiative Accelerating Treatments to Patients (ATP), which is designed to speed up development of treatments which could slow or stop progression of PKD. Key components of this initiative include drug repurposing, targeted research grants, tissue donation, clinical trials and much more.

In addition to funding research and educational programs, the PKD Foundation has more than 60 volunteer-led local Chapters across the country. The local chapters are the backbone of the PKD community, helping the Foundation raise funds for PKD research and increase PKD awareness.

The PKD Foundation founded by Joseph H. Bruening and Jared J. Grantham, MD, and is headquartered in Kansas City, MO.

Kidney Dialysis

From BusinessWorld, by P B Jayakumar, India

Kidney Care Comes Of Age

Kamal D. Shah, a chemical engineer and a former employee of Apple, was living a life of bliss until bad news came calling. To be precise, it was not a single piece of news but a series of events that unfolded, starting 1997. It began with his kidneys, with both showing signs of damage. He was put on hemodialysis for a year and a half. His mother gave him a kidney, but the transplant wasn’t successful. A few years later, Shah was caught in the dreaded December 2004 tsunami while holidaying in Mahabalipuram with friends. Though he escaped, the incident took a toll on his body, causing severe kidney infection and resultant complications. Since then, Shah has been on daily dialysis at home.

But unlike most patients with a similar condition, Shah did not retire from an active life and went on to set up a dialysis care chain — Hyderabad-based NephroPlus — with Vikram Vuppala, a healthcare strategy consultant with McKinsey in the US. Later, Sandeep Gudibanda, an engineer-turned-entrepreneur, joined them.

Even as data indicates an acute shortage of medical infrastructure for dialysis and renal care, a new business segment is shaping up in India’s healthcare sector. In the past three to four years, several chains have come up offering quality dialysis facilities and related services. There are currently three or four such organised chains, while more are waiting in the wings with various business models.

There is little doubt that the potential for an organised renal care market is immense. There are millions of people in the country whose lives depend on dialysis. In fact, so serious is the current state of affairs that the Supreme Court, on 26 November 2014, sought a response from the central and state governments on the status of dialysis and renal care infrastructure in the country. The court’s action came in response to a public interest litigation (PIL) filed by advocate Sanjeeb Panigrahi.

A Crying Need
“The size of the dialysis market in India is about $350 million and is growing at 20-25 per cent annually. Unfortunately, about 3.5 lakh people in India reach the end stage of kidney disease every year,” says Shriram Vijayakumar, founder and chief executive of Bangalore-based DaVita NephroLife, which has already set up 14 centres. - [Read more]

PKD Awareness & Fundraising

From Broadway World

Remy Zaken, Ali Ewoldt & More Set for Broadway Sings for PKD at Joe's Pub, 8/15

The fourth annual Broadway Sings for PKD, a concert benefiting the Polycystic Kidney Disease Foundation, will be offered Friday, August 15th at 9:30 pm at Joe's Pub.

The concert will feature new musical theatre songs by emerging writers, including Hali Alspach, Will Aronson, James K. Ballard, Christina Capatides, Ty Defoe, Benny Gammerman, Emily Goldman, Sarah Hammond, Edison Hong, Bob Kelly, Rachel Kunstadt, Ariel Mitchell, Carlos Murillo, Bill Nelson, Tidtaya Sinutoke, and Paulo K. Tirol.

Performers will include Ali Ewoldt, Andrew Boetcher, Sam Heldt, Beth Kirkpatrick, Patty Nieman, Emily Skeggs, Jason Sweettooth Williams, Remy Zaken, and more. Joanna Parson hosts.

Broadway Sings for PKD is produced by Rachel Kunstadt and Quintessence of Dust Productions, directed by Daniella Caggiano, and music directed by Will Buck.

Proceeds from the evening will go to the Polycystic Kidney Disease Foundation, which "promotes programs of research, advocacy, education, support and awareness in order to discover treatments and a cure for Polycystic Kidney Disease and improve the lives of all it affects."

Tickets are $15 in advance and $20 at the door. There is a $12 food or two-drink minimum. Tickets are available online at www.joespub.com, by phone at (212) 967-7555 or in person at The Public Theater Box Office (425 Lafayette Street).

From The Portsmouth News, United Kingdom

Curtis Pitter tackles mountain trek to raise money

WHEN Curtis Pitter was diagnosed with kidney disease, his dream of becoming a pilot came to an end.

But the 21-year-old was determined to remain positive and decided to climb the highest mountain in Britain in a bid to raise money for the Polycystic Kidney Disease Charity.

Curtis was recently diagnosed with the illness which causes cysts to form in the kidney and can lead to renal failure. But rather than let it beat him, he wanted to do something to raise money for the charity which has helped him.

So he decided to climb Ben Nevis in Scotland.

He said: ‘A very good friend of mine and I had talked about climbing Ben Nevis for ages.

‘We started making plans well over a year ago now and finally, this year we found the time to be able to do it.’

Curtis discovered the diagnosis when he went for his medical to become a pilot for the RAF.

After passing the aptitude tests and the interview, he was called for a medical.

It was during this that he was diagnosed with polycystic kidney disease and was forced to terminate his application.

He now works in the video editing and quality control department of Douglas Stafford, based at 1000 Lakeside, in North Harbour, Cosham.

Curtis added: ‘My family have a history of polycystic kidney disease.

‘My father was lucky enough to receive a kidney donation from my mother eight years ago.

‘Thanks to her, he is fit and well. So I was really keen to do something for a charity that had helped my family.’

Curtis trained hard to prepare himself for the climb and despite being a keen rower for BTC ARC in Southampton, he admitted training had been tough with a combination of running, rowing, swimming and cycling.

He and his friend Jared Ares Brutal completed the climb of the 1,344-metre mountain last week. So far, the pair have raised just over £2,000.

To make a donation to Curtis and Jared, visit justgiving.com/curtis-pitter.

Kids With PKD

From Pediatrics, The Official Journal of the American Academy of Pediatrics

Autosomal Recessive Polycystic Kidney Disease: A Hepatorenal Fibrocystic Disorder With Pleiotropic Effects

State-of-the-Art Review Article
Erum A. Hartung, MDa and
Lisa M. Guay-Woodford, MDb


ABSTRACT

Autosomal recessive polycystic kidney disease (ARPKD) is an important cause of chronic kidney disease in children. The care of ARPKD patients has traditionally been the realm of pediatric nephrologists; however, the disease has multisystem effects, and a comprehensive care strategy often requires a multidisciplinary team. Most notably, ARPKD patients have congenital hepatic fibrosis, which can lead to portal hypertension, requiring close follow-up by pediatric gastroenterologists. In severely affected infants, the diagnosis is often first suspected by obstetricians detecting enlarged, echogenic kidneys and oligohydramnios on prenatal ultrasounds. Neonatologists are central to the care of these infants, who may have respiratory compromise due to pulmonary hypoplasia and massively enlarged kidneys. Surgical considerations can include the possibility of nephrectomy to relieve mass effect, placement of dialysis access, and kidney and/or liver transplantation. Families of patients with ARPKD also face decisions regarding genetic testing of affected children, testing of asymptomatic siblings, or consideration of preimplantation genetic diagnosis for future pregnancies. They may therefore interface with genetic counselors, geneticists, and reproductive endocrinologists. Children with ARPKD may also be at risk for neurocognitive dysfunction and may require neuropsychological referral. The care of patients and families affected by ARPKD is therefore a multidisciplinary effort, and the general pediatrician can play a central role in this complex web of care. In this review, we outline the spectrum of clinical manifestations of ARPKD and review genetics of the disease, clinical and genetic diagnosis, perinatal management, management of organ-specific complications, and future directions for disease monitoring and potential therapies.

Crowdfunding Can Help

Kidney Transplant

From Long Island Now, Long Island, NY, By Tara Conry

Crowdfunding helps LI woman with high kidney transplant costs

In a video posted last week to YouTube, 8-year-old Shirley resident Karen Jackson and her brother, Cole, 5, can be seen making pleas on behalf of their grandma.

“Please help us get money, so my ‘Beba’ can get her kidney fixed,” says Cole, referring to his grandmother, Smithtown’s Claudia Bowers.

Bowers, 62, has been in renal failure since January 2013, and has been undergoing nine hours [Read more]

From Coventry Telegraph, United Kingdom, By Cara Simpson

Mum trying to save son's life by giving him a kidney is told she cannot stay in UK for transplant

Warwick University student who is seriously ill is desperate for mum's donation but Home Office wont extend her visa.

A desperate mum says she is being denied the chance to save her son's life because of a visa dispute.

Pulkit Maniktala, an international student at Warwick University, needs an urgent kidney transplant.

The 21-year-old Indian national is being treated at Coventry’s University Hospital for end-stage renal failure with dialysis three times a week.

His mother is a suitable donor but she is being denied an extension on her visa so she can undergo the life-saving operation.

The family claim they’ve been told the circumstances are not exceptional enough.

His mum Karuna Maniktala said: “This operation is our silver lining.

“Whenever he cried, I used to tell him that he’s being so brave, and to bear the pain for two or three months and then it will all be over. Now what can I tell him?”

Since being diagnosed with renal failure, Pulkit has juggled lectures and coursework with the demands of four-hour long dialysis sessions in hospital three times a week.

He hopes to study for a masters at Warwick once he has his degree.

Some 2,000 people touched by Pulkit’s plight have put their names to an online petition calling for the Home Office to have a change of heart. [Read more]

Legislation News

From Roll Call, Washington, DC, By LaVarne Burton, Lori Hartwell, Hrant Jamgochian and Bruce Skyer

Bipartisan Legislation Built With Quality Patient Care in Mind  Commentary

Although Americans might struggle to find consensus on many policy issues related to health care, when faced with a serious health issue we unite behind the common goal of helping those living with it. Policymakers, health officials and the public have thrown their muscle behind putting a stop to once-deadly childhood illnesses, harmful toxins, and other threats to our health and safety.

Now the kidney community is doing the same — standing together to improve the outlook for Americans with Chronic Kidney Disease and for those who have kidney failure. Our nation’s leading kidney patient advocacy groups are proud to support H.R. 4814 —The Chronic Kidney Disease Improvement in Research and Treatment Act of 2014.

CKD, a slow and often silent, progressive condition, damages the kidney’s ability to cleanse the body of waste products. More than 26 million Americans have CKD and another 1 in 3 is at risk. When CKD is not recognized and treated, it can progress to irreversible kidney failure, or End Stage Renal Disease. Kidney failure affects more than 615,000 Americans and is survivable only with a kidney transplant or life-sustaining dialysis treatments that cleanse the blood several times per week.

Increases in risk factors for CKD and ESRD — including high blood pressure, diabetes and obesity — have led to an increased urgency for new approaches in prevention and treatment. The Chronic Kidney Disease Improvement in Research and Treatment Act of 2014 addresses this problem from multiple angles and seeks to ensure that Americans living with kidney disease have access to the health care necessary to survive and thrive.

H.R. 4814 addresses gaps in critical research by requiring the Department of Health and Human Services to evaluate federal spending on kidney disease research compared to that on kidney disease treatment; improve coordination of Federal research efforts across agencies; and investigate the differences in disease progression and treatment patterns in minority populations which are disproportionately impacted by the disease. The bill also improves access to care for Medicare beneficiaries with CKD. It removes barriers to patients receiving the Medicare Kidney Disease Education program, which helps patients make informed decisions about dialysis options, including home dialysis, getting on the transplant waiting list, and steps to take towards identifying a living kidney donor. H.R. 4814 also provides incentives to nephrologists and other non-physician health professionals to practice in underserved rural and urban areas to improve access to care. [Read more]

PKD News

From CTV News, Montreal, Canada

Polycystic Kidney Disease Foundation of Canada Hosts "A Shoot for the End"

On Sunday, August 10th from 1:00 pm - 7:00 pm, it's your opportunity to take part in a photo shoot with a professional photographer. To help you look your best, a make-up artist and hairdresser will be on site along with some special accessories. There will also be a silent auction with a number of great prizes to be had. For additional information, please call 514-501-9924.

From PKD Foundation of Canada

The 2013 PKD Foundation of Canada Annual Report is Now Available

We are proud to share our 2013 Annual Report with you! None of the work – whether funding vital research, providing education and support to patients and their families, elevating the patients’ voice through advocacy, or raising awareness of polycystic kidney disease – could have happened without you. Take a look at what you have made possible and all that we have accomplished together by downloading the PKD Foundation of Canada’s 2013 Annual Report here.

Let the Walking Begin

Walk for PKD

From WCVB.com, abc Affiliate, Boston, MA

Boston Walk for PKD 2014

We Need You To Walk in 2014 — Unite to Fight PKD

Polycystic (PKD) is one of the most common, life-threatening genetic diseases affecting thousands in America and millions worldwide. There is no treatment or cure. You can help bring a treatment within reach.

The Walk for PKD is the PKD Foundation's largest annual . Funds raised from Walks across the country make up nearly one third of our . This year, Join WCVB Newscenter 5's Kathy Curran on Saturday September 20, 2014 at DCR Artesani Park.

The more money our walkers raise, the more we can do in the fight to end PKD!

You can help by joining the Walk as a participant, volunteer or donor. Together, we can walk boldly toward a where no one suffers the full effects of PKD. Learn more about PKD and why we're walking for a cure.

Register for the Boston walk here.


From Vauxhall Advance, Vauxhall, Alberta, Canada

Clemis clan raising awareness

A team of Taberites is back raising funds for kidney research in support of the upcoming Kidney March in September.

Participating as part of team “Nephron Fabulous” in 2014 will be Jan Clemis, Robin Pickerell, Carli Bekkering, and Blair Clemis. Spanning Sept. 5-7, the event sees marchers trek 100 kilometres from Kananaskis Country to Calgary.

“They’ve all done it before. The first year, which was 2010, we had a team of eight,” said marcher Jan Clemis. “It was a little bit bigger and broader with eight of us. That was the inaugural year. They hold it kind of always in the same place — they had to change it last year because of the floods — but we start at Millarville Race Track, we walk through Kananaskis Country, and then we finish the third day at Canada Olympic Park.”

Clemis, who suffers from kidney disease herself, along with members of her family, has participated in the Kidney March since its inception. 

“We march into the park, and then we come down, and everyone accumulates at the very top, and then we all come down as a group. And then we get to meet our families, and have some closing ceremonies. It’s pretty emotional, everyone has done this ardous journey together, and you get to meet so many people that are well connected with that common thread. Everyone has their own story.”
Not exactly a “walk in the park”, the Kidney March sees marchers put in some fairly ardous days to reach their destination on time.

“The first two days are the long days. We do 38 kilometres, and 37 kilometres, and then the last day is the short day, we just do 25 kilometres,” said Clemis.

Many members of Clemis' family have polycystic kidney disease, a condition passed on genetically that sees cysts develop from the nephrons (filtering units) of the kidneys, which enlarges them and eventually prevents the proper filtration of blood.

“We’ve always been connected, because we have a genetic kidney disease within our family. Both of my daughters have it, I got it from my dad, who got it from his mom. I have a sister and nephew, and aunt and uncle, and some cousins with PKD. So it’s really close to our heart.” 

Clemis is also a firm supporter of organ donation of any kind, not just for sufferers of kidney disease, but for all afflictions.

“One of the main reasons why we march is for research into all various kidney diseases, but another important part of why we do the Kidney March is to promote organ donation,” said Clemis.
Fundraising for the team is already well underway, with a target figure set for each marcher participating of $2,200. The team is hoping to raise $8,000 in total. [Read more]




Singing for PKD

From Public Theater, New York, NY

Broadway Sings for PKD

August 15, 2014, Tickets $15.00

With the prompt "ask big questions", emerging musical theatre writers showcase new songs, to be interpreted by Broadway performers in the 4th annual Broadway Sings for PKD, raising awareness of Polycystic Kidney Disease. All proceeds benefit the Polycystic Kidney Disease Foundation.

Living With PKD

From Leader-Telegram, Eau Claire, Wisconsin, By Emily Miels Leader-Telegram staff

EC residents involved in tranplants compete in tournament

When Jim McDonald found out he had polycystic kidney disease, his wife, Etta, gave him the gift of life by donating one of her kidneys to him.

Six years later, the Eau Claire couple aren’t letting the transplant slow them down. The McDonalds returned from the Transplant Games of America earlier this month, where they competed in athletics alongside other transplant recipients, donors and donor families.

The Transplant Games of America, which took place July 11-15 in Houston, Texas, is a biennial event that attracted thousands of people from throughout the U.S. The games are a tribute to what the McDonalds, and others with similar experiences, endured and have since accomplished.

“It’s very humbling,” Jim McDonald, 58, said.

The McDonalds competed alongside about 60 others on Team Wisconsin. Etta McDonald, 55, swam, and her husband participated on the group basketball team.

Josh Bergeron, a 29-year-old Eau Claire resident who had a heart transplant 15 years ago, also attended the games with Team Wisconsin. He said the event really isn’t about winning but rather supporting each other and having fun.

“Nobody really cares if they get any medals,” Bergeron said. “If you get some, it’s cool, but there’s not people at each other’s throats or anything.”

The competition includes such events as trivia, darts and poker for those who aren’t able to compete in the more physical activities.

“It’s really like they just want everybody to participate,” Bergeron said.

‘Not alone’ [Read more]

Kidney Treatment Choices

From Cleveland Clinic, Cleveland, Ohio

4 Facts You Need to Know About Kidney Transplants and Dialysis

Whether it’s a heart, lung, kidney or liver, many people assume that transplantation is a last resort in treating a failing organ.

But in the case of kidney disease, transplantation is actually the first line of treatment for patients who are candidates to receive a new kidney.

“A kidney transplant is not a last resort; it’s a first resort,” says nephrologist Emilio Poggio, MD, an expert in kidney transplantation. “For people who meet the requirements for kidney transplantation, it’s the best option for treatment.”

But the scarcity of kidneys for transplantation makes the alternatives — hemodialysis and peritonealdialysis — much more common.
Dialysis vs. kidney transplant

Dialysis artificially does what healthy kidneys do. It pumps blood out of your body, cleans it and returns it to your body. Treatments are usually for three or four hours, three times a week.

“Transplantation is the way to go, and the sooner the better,” says nephrologist Robert Heyka, MD, Chair of Nephrology in the Department of Hypertension and Nephrology. “But the reality is most people will still need to be on dialysis.”

According to the Centers for Disease Control and Prevention, more than 10 percent of American adults – about 20 million people — have chronic kidney disease. Dr. Poggio says 600,000 are on dialysis and 100,000 are on the waiting list for a kidney transplant. Yet only 16,000 transplants are done each year.
What you need to know

Experts say you should know these four facts:

1. Dialysis has both positives and negatives. Some of Dr. Heyka’s patients put off going on dialysis, but when they try it, they may find themselves pleasantly surprised.

“People often say that they didn’t realize how bad they’d been feeling until they got treatment,” he says. “Within the first few months, their appetite is back, they’re gaining weight and they have more energy.”

But the time commitment of dialysis treatments can limit a person’s independence and quality of life.

2. Benefits of transplant outweigh the side effects. “There’s plenty of data that, despite the negatives of transplantation, the short-term and long-term outcomes are much better than those on dialysis,” says Dr. Poggio. “Their quality of life improves, they live better and longer.”

In fact, a landmark 1999 study compared the health outcomes of patients on dialysis waiting for a transplant to those who had already received a new kidney. The study found the long-term mortality rate of transplant recipients was 48 to 82 percent lower than for those on dialysis.

Of the 16,000 kidney transplants conducted in the U.S. every year, 30 to 40 percent come from living donors. Those transplants have greater success than transplants from cadavers.

3. Not everyone can receive a transplant. Dr. Poggio considers many factors in deciding who is a candidate for a new kidney, including other medical conditions like diabetes and heart failure. But there are ways you can improve your candidacy.

“Stay healthy and active,” he says. “Manage your conditions that might complicate a transplant — like smoking — and remain compliant with your medical therapies.”

4. Choose your care wisely. Living well on dialysis depends on choosing the right location for your care. Social workers should provide support. Good communication among your healthcare providers is a key factor. And a positive atmosphere with social interaction among patients is also important.

“Don’t be afraid to ask, ‘How often will I see my doctor? What are your rates for hospitalization? Will I see a nurse practitioner?’” says Dr. Heyka. “If you are in the right unit, you’ll get lots of support.”

If you have kidney disease and currently on dialysis, don’t hesitate to talk to your doctor about a kidney transplant. Depending upon your individual situation, it could offer many benefits. [Read more]