An Organ Shortage Kills 30 Americans Every Day; Withhold Dialysis from Ebola Patients?

Kidney Debate

From The Washington Post, Wonkblog By Keith Humphreys

An organ shortage kills 30 Americans every day. Is it time to pay donors?

Thirty years ago this week, President Reagan signed the National Organ Transplant Act (NOTA), which established the federal legal framework for the procurement, donation and transplantation of organs needed by desperately ill Americans. The law’s advocates hoped that it would end organ shortages, but today over 120,000 Americans are on waiting lists. With the need for organs – especially kidneys -- projected to outstrip supply even more in coming years, intense debate has broken out over whether NOTA should be amended to allow funding of incentives for donors.

The interests at stake are colossal. About 30 Americans a day either die on the waiting list or are removed from it because they have become too ill to receive a transplant. Taxpayers also bear a significant burden in the case of kidneys because of the special status of renal dialysis within the Medicare program. In 1972, Congress mandated that Medicare cover the costs of care for end stage renal disease regardless of patient age. In 2011, over 500,000 people took advantage of this benefit at a cost of over $34 billion, which is more than 6% of Medicare’s entire budget.

One commonly proposed solution to the organ shortage derives from behavioral economic “nudge” principles. Rather than requiring Americans to complete paperwork in order to opt-in to donation at death, the country could shift to the European model of presuming that donation at death was acceptable. But Tom Mone, chief executive of OneLegacy, the nation’s largest organ and tissue recovery organization, points out that “The recovery rate for deceased donors in the United States is actually better than that of European nations with presumed consent laws. The United States rigorously follows individual donor registrations whereas presumed consent countries actually defer to family objections.”

In any event, because less than 1% of deceased individuals are medically eligible to donate organs, and 75% of this group in the United States in fact does so, there simply isn’t enough “there there” to remedy the shortage with improved recovery from deceased donors.

This brings up the currently illegal option of providing incentives for living donors. NOTA’s main Capitol Hill champion, a then little-known Congressman Al Gore Jr., allowed for the possibility of rewarding donors if the purely altruism-driven donation system did not keep up with demand. Today, one of the leading exponents of this idea is Dr. Sally Satel, a resident scholar at the American Enterprise Institute. Sally recently participated in a forum on organ donation at Stanford Medical School, after which I interviewed her regarding her proposal to incentivize kidney donation. Below is an edited transcript of our discussion. [Read more]



Dialysis Protocols for Ebola

From Reuters.com, BY JULIE STEENHUYSEN AND SHARON BEGLEY

Some U.S. hospitals weigh withholding care to Ebola patients

(Reuters) - The Ebola crisis is forcing the American healthcare system to consider the previously unthinkable: withholding some medical interventions because they are too dangerous to doctors and nurses and unlikely to help a patient.

U.S. hospitals have over the years come under criticism for undertaking measures that prolong dying rather than improve patients' quality of life.

But the care of the first Ebola patient diagnosed in the United States, who received dialysis and intubation and infected two nurses caring for him, is spurring hospitals and medical associations to develop the first guidelines for what can reasonably be done and what should be withheld.

Officials from at least three hospital systems interviewed by Reuters said they were considering whether to withhold individual procedures or leave it up to individual doctors to determine whether an intervention would be performed.

Ethics experts say they are also fielding more calls from doctors asking what their professional obligations are to patients if healthcare workers could be at risk.

U.S. health officials meanwhile are trying to establish a network of about 20 hospitals nationwide that would be fully equipped to handle all aspects of Ebola care.

Their concern is that poorly trained or poorly equipped hospitals that perform invasive procedures will expose staff to bodily fluids of a patient when they are most infectious. The U.S. Centers for Disease Control and Prevention is working with kidney specialists on clinical guidelines for delivering dialysis to Ebola patients. The recommendations could come as early as this week.

The possibility of withholding care represents a departure from the "do everything" philosophy in most American hospitals and a return to a view that held sway a century ago, when doctors were at greater risk of becoming infected by treating dying patients.

"This is another example of how this 21st century viral threat has pulled us back into the 19th century," said medical historian Dr. Howard Markel of the University of Michigan. [Read more]

Gift of Life

From Lowell Sun, Lowell, MA, By Katina Caraganis

Ayer teacher donates kidney to father of students at school where she works

WORCESTER -- As Richard Finlay sat in the surgical waiting room of UMass Memorial Medical Center on Tuesday morning, he couldn't help but be thankful for the young woman who was willing to make a decision that would help prolong his life.

Two of Finlay's three children attend Page Hilltop Elementary School in Ayer, and when special-education teacher Kaitlin O'Connell heard the 52-year-old Ayer resident would die without a transplant, she knew she had to step in.

Finlay has been on dialysis for the last year because his kidneys were currently only functioning at 6 percent. Finlay suffers from polycystic kidney disease, a disorder passed through families in which cysts form in the kidneys, causing them to enlarge.

His two older brothers also suffer from the disorder, and Finlay is the second of the siblings to receive a transplant. His grandfather died from the disease, and his father received a kidney from his elderly mother.

O'Connell, 28, had previously tried to be a liver donor for her father, Barry, who is in liver failure, but she was not an ideal match and was denied.

Barry O'Connell contracted hepatitis when he was 18 after he and his friends gave each other tattoos. Everyone he was with that day likely contracted the disease.

The hepatitis has been treated, but he's in stage 4 liver failure, and the disease is attacking his lungs.

Finlay called O'Connell's decision to donate to him "selfless" and said without the transplant or continuing on dialysis three a time a week, he would likely die.

His wife, Karen, said the process leading up to the transplant hasn't been easy.

"At times, it's been stressful," she said while sitting in the waiting room as O'Connell was prepped for her portion of the surgery. "It was a long time waiting. Some days we were down, and some days we were up."

She remembers the day O'Connell came by their house to tell them she was going to donate her kidney.

Richard Finlay, who works for Verizon, wasn't home from work yet, and Karen was eating dinner with the couple's three children. She remembers there was a knock at the door, and when she answered it, there was a teacher she knew with someone she didn't.

"They had a beautiful cake with them, and I just thought they had stopped by to check in on us like so many people had," she said. "Kaitlin introduced herself to me as my husband's donor, and I was just completely shocked."

She said she was unable to speak while her children were in the background yelling and screaming with excitement. [Read more]

From NewsMiner.com, Fairbanks, Alaska, By Kris Capps

Two Fairbanks friends joined by a lifelong gift

FAIRBANKS — Curt Whalen and Dan Hauer have been friends and co-workers for more than 10 years.

So when Whalen, 54, discovered he needed a kidney transplant, Hauer didn’t hesitate to offer one of his own kidneys.

The transplant surgery took place Monday in Seattle and both men are feeling great about the operation and about their friendship.

They both work as biomedical technicians at Fairbanks Memorial Hospital. The two are part of a team of five people who repair hospital equipment used to treat and diagnose patients.

“Our role is to keep patients safe,” Hauer said.

The two men met on the job in 2004 and have worked closely together since then. A couple years ago, Hauer became Whalen’s boss.

“We’re pretty close as far as workers, side-by-side,” Whalen said.

Whalen has known since 2000 that he suffers from polycystic kidney disease, an inherited disorder that occurs when clusters of cysts develop in the kidneys. Over the years, the disease progressively worsened. By the time 2014 rolled around, he realized he needed to get on the kidney transplant list.

Whalen said it would never cross his mind to ask Hauer or anyone else to donate a kidney.

But one day, Hauer just offered.

The conversation took place, Hauer said, where most of their serious conversations happen: at work. [Read more]

Fighting PKD

From Express & Star, United Kingdom

Our family's fight to beat cruel disease

Losing two members of one family to the same disease is heartbreaking enough.

But the Turners from Staffordshire then had to cope with the news that three more had been diagnosed with it.

Now though they are using their experience battling polycystic kidney disease to help others and raise cash to fund research into the hereditary disease that has struck four generations.

Thirty-seven-year-old Craig Turner and his three-year-old son Charlie from Chasetown are both being treated for the condition.

Mr Turner's father Phillip died of a brain haemorrhage caused by the disease 14 years ago, aged 42, and his grandmother Jean died before him of the same condition.

Debbie Turner, his sister is also suffering from the disease, which causes cysts to grow on the kidneys.

Now Craig's wife, 33-year-old Kay Turner is now raising money for the Polycystic Kidney Charity in the hope that new drugs will be developed to battle the condition.

Craig only found out he had the disease when he was being checked by doctors after volunteering to donate a kidney to his sister.

And shortly after Kay found out she was pregnant - and then discovered unborn Charlie would have the same condition.

Despite the devastating impact PKD has had on her family, Kay says they want to use their experiences to help the thousands of people across the country that are affected by it each year.

The disease can have varying levels of seriousness - but there is little medication available to treat it at its more serious stages.

It can cause enlargement of the kidneys and also damage the liver, pancreas and, in some rare cases, the heart and brain.

Craig, a manager for a delivery firm in Tamworth, is currently continuing with life as normal other than taking blood pressure tablets and having regular check-ups.

And the outlook also looks bright at the moment for their son Charlie as he has so far showed few signs of any effects of the condition, he will be monitored though to check for any symptoms.

Mrs Turner said: "It's so difficult to know what will happen to someone when they get PKD but often they would be expected to live to 40 or 50.

"Charlie is very healthy at the moment but next month we will find out how big the cysts are growing."

She has already generated £1,000 and is hoping that more donations will flood in over the coming weeks.

Kay, 33, took part in the Great Birmingham Run last weekend and has also staged a fundraising fun day that saw her brother Phillip get his eyebrows waxed completely off. [Read more]

CDC Says Dialysis Can Be 'High Risk' Procedure to Health Care Workers for Ebola Transmission

Ebola Risks

From KXAN, Local NBC affiliate, Austin, TX, By Phil Prazan

Two ‘high risk’ procedures where Ebola can be transmitted

With the new Ebola infection of a Dallas nurse, we wanted to know more about what the Centers for Disease Control call the two “high risk procedures” for spreading the disease. Any time a healthcare provider works around bodily fluids of someone with Ebola, the risk for contamination is there.

“Any orifice, your mouth, your nose, your eyes. Wherever blood can come out,” said Catherine Troisi with the University of Texas School of Public Health.

The CDC says the two high risk procedures are respiratory intubation and kidney dialysis. Respiratory intubation is the insertion and extraction of a breathing tube. Kidney Dialysis usually involves connecting the patient to a machine via IVs and tubing to clean the blood.

“I think it is showing us where we are and where we are not prepared for an outbreak,” said Troisi.

She says this outbreak has a 70 percent mortality rate with most cases centered in West Africa. The virus survives a few hours as the bodily fluid dries. But if it stays in liquid form, it can stay active for days.

Most diseases do not require protective gear. Fewer than half of Ebola patients hemorrhage bodily fluid, but wearing the gear is crucial. Troisis describes it as the number one step.

“Because your safety equipment may be contaminated on the outside. It’s when you get out of it that you have to be particularly careful,” said Troisi.

If it’s done right, she says it should take about 15 minutes to put on and take off the protective clothing. With a second healthcare worker infected, it emphasizes every precaution is necessary.



Kidney Transplant Debate

From Slate.com, by Eric Posner

A Moral Market

Altruism exchanges could ease the desperate shortage of kidneys for transplant.

Sunday is the 30th anniversary of the National Organ Transplant Act, but no one wants to celebrate. U.S. policy on organ transplants—especially as applied to kidneys—is a mess. More than 100,000 people languish on the waitlist for kidneys, thousands of them dying before they receive a transplant. In 2012, almost 35,000 people joined the waitlist, while only 17,000 received transplants. Every year the waitlist lengthens.


NOTA virtually guaranteed this shortage by shutting down an incipient market in kidneys. Some economists have argued that the best way to encourage people to donate kidneys is to allow people to sell them. Since almost everyone has one unneeded kidney, and most people could use some money, a market would form. The estimated price—perhaps in the range of $100,000 per kidney—would be less than the cost of dialysis (more than $70,000 per patient per year), even taking into account transplant surgery, and so the donor fee would be paid by insurers, including Medicare and Medicaid.


The law reflected a popular, inchoate repugnance at the idea of kidney-selling. Ethicists have tried to supply a philosophical argument. They argue that, if a market for kidneys existed, poor people would be taken advantage of; moreover, we should not treat body parts as “commodities.” Neither of these arguments is persuasive. A regulated market that required informed consent would eliminate the worst forms of exploitation and could ensure (as under current law) that kidneys were equally available to rich and poor. If poor people really can’t be trusted to make good decisions on their own behalf, then a simple solution is to ban poor people from selling their kidneys while allowing everyone else to do so. Nor is it clear why it’s more objectionable to sell a kidney than, say, one’s hair, blood plasma, egg cells, or sperm (sale of which is legal in most places within the United States).


But political opposition to selling kidneys will not go away, and so the question is how to increase the supply of kidneys without creating a market. Most proposals, including a recent open letter by transplant experts and bioethicists to top government officials, try to thread the needle by giving donors implicit or in-kind compensation, such as travel expenses to the hospital, a tax credit, or priority on the waitlist if they ever need a kidney themselves. The proposals amount to attempts to evade moral objections by allowing limited, implicit compensation rather than a price in dollars.


But it is possible to be more imaginative. It may help to sort out the source of moral objections to a market in kidneys. One possible view is that people should notexchange their body parts for other things of value. Another is that people shouldn’tprofit on the sale of their body parts. These ideas are different.


To see why, imagine that Martha wants to donate her kidney to her daughter (this is legal, of course), but the daughter’s body would reject her mother’s kidney because the mother’s and daughter’s antigens are not matched, or similar enough. Meanwhile, an unrelated person named Frank wants to donate his kidney to his son, but also cannot do so because of immunological incompatibility. But it happens that Martha matches with Frank’s son and Frank matches with Martha’s daughter. Could Martha donate her kidney to Frank’s son in exchange for Frank donating his kidney to Martha’s daughter?


Under NOTA, the answer was (or was believed to be) no: An exchange of any kind was illegal. In a subsequent law, called the Charlie W. Norwood Living Organ Donation Act, Congress clarified that this type of exchange, called a “paired donation,” is lawful. But only a few hundred transplants per year are arranged through paired donations because it is hard to find and arrange matches between strangers. [Read more]

Gift of Life

From KCBS, San Francisco, CA, by Ann Notarangelo
Walnut Creek Woman Set For Life-Saving Kidney Donation From Longtime Friend, Co-Worker

A Walnut Creek woman who learned she had the same kidney disease that killed her grandfather, mother and uncle is getting a live-saving transplant from someone near to her, literally and figuratively.

Jody Miranda will be getting a kidney from her friend and longtime co-worker at John Muir Medical Center in Walnut Creek, Teri Lineker.

For the past nine years, Lineker and Miranda have been a team in the Emergency Department.

We’re like sisters,” said Lineker. “We mess with each other during the day.”

Miranda was suffering from renal failure after years of polycystic kidney disease.

“Maybe two years ago things really started to hit and my kidney’s started failing really bad,” said Miranda.

When she started getting sick, that’s when I started getting worried because I know she’s got kids,” said Lineker. “She’s a single parent.”

Jody started dialysis but knew she would eventually need a kidney transplant.

I figured I’d never know the donor,” said Miranda. “They said there was an eight-and-a-half year waiting list for my blood type.

But just as their personalities clicked, so did their blood types – and Lineker surprised her friend with the offer to donate a kidney.

“I’m like are you serious? She was, ‘why, you don’t want me to?’” laughed Miranda. “I said, ‘No! Of course I do!’ It’s just, wow.”

“She needs to be around for her kids and if I can give her something to help her live then that’s the important thing,” said Lineker.

Surgery is scheduled for Friday and the two have inspired coworkers who’ve chipped in with a Gofundme page, personal days and more … to help the friends recuperate.

“It’s going to change my life forever,” said Miranda. But some things won’t change.

“Oh, I’ll still pick on her,” laughed Lineker.

These two have helped others when life itself seemed to be in question. Lineker said this is an extension of who she is and there is no uncertainty.

“Life’s short,” Lineker said. “And if you can help someone extend their life … I wish more people would do it.”

Lineker will likely be off of work for six weeks. Miranda will have a longer recovery and be off for at least two-and-a-half months.

From Vandalia Leader, Vandalia, MO

Vandalia resident gives kidney to friend

When Vandalia’s Renee Goeppner saw an inspiring friend’s health continue to decline last Christmas, it weighed heavily on her heart.

Her friend, Chris Mattox, of Springfield, has the genetic condition polycystic kidney disease (PKD), which has no cure.

According to the National Kidney Foundation, PKD causes numerous cysts to grow in the kidneys. These cysts are filled with fluid. If too many cysts grow or if they get too big, the kidneys can become damaged. PKD cysts can slowly replace much of the kidneys, reducing kidney function and leading to kidney failure.

Needless to say, Mattox needed a kidney transplant and Goeppner wanted to see how she could help.
“Chris is one of these type people like me, who would do anything he can to help everyone else but won’t ask for help,” Goeppner said. “I knew the situation was getting dire when he was starting dialysis.”

She contacted the University of Kansas Hospital (KU Hospital), whom Mattox was working with, in April to see if she was a suitable donor.

She already knew the two had the same blood type.

A test was taken in mid-June and she proved to be a suitable donor.

Surgeons Dr. Sean Kumer and Dr. Timothy Schmitt scheduled an August 5 surgery.
During the surgery, Goeppner’s kidney was surgically placed inside Mattox’s body. The area was stapled and the kidney was functioning immediately.

Meanwhile, Goeppner said she was worn out from the surgery.
“They told me when you go in that the donor would feel a lot worse than the recipient,” she noted. “It would be like a truck ran over you.”

Goeppner was released after two days.

Mattox remained in the hospital and went home three days later. He went back due to some fluid retention, but once it was resolved, he was reportedly doing well and returned to work on October 1.
“Like I’ve told him all along, the world is a much better place with him in it,” Goeppner said. “I did it for him and I did it for his daughter (who is in college.) I just wanted them to have a long, happy life together.”

Goeppner said she was thankful she could help out her friend.
“I’d do it all again in a heartbeat, knowing it went so well and it helped him so much,” she said.
Goeppner, who works at WERDCC in Vandalia, said she does notice from time to time that her energy levels now go up and down.

Goeppner and Mattox became good friends when the two of them worked at the Ozark Correctional Center.

Mattox served in a reserve unit and was deployed in late 2006. He served overseas for 10 months.
His service inspired Goeppner to join the National Guard in early 2007, though she officially was sworn in during mid-August of that year.

Three weeks later, she received orders to report for active service.
She had previously had an opportunity to enlist but passed it up. Mattox’s service was the inspiration she needed.

Goeppner received a medical discharge in May 2013.

Goeppner is the mother of two sons, ages 18 and 25.

According to the National Kidney Foundation, there are currently 101,170 people in the U.S. awaiting kidney transplants.

There were only 16,896 transplants in 2013, with 11,163 coming from deceased donors and 5,733 coming from living donors.

Goeppner noted that she’s an advocate for donating blood and platelets regularly.

“If you can’t give an organ, give blood if you can,” she said. “It’s a big help.”

On Dialysis? Aerobic Exercise is Key for Positive Physical & Mental Health

Living with Dialysis

From Science 2.0, Science Blogging

Exercise Linked With Improved Physical And Mental Health Among Dialysis Patients

Washington, DC (October 2, 2014) — Aerobic physical activity is strongly linked with better health-related quality of life, fewer depressive symptoms, and prolonged life in kidney failure patients on dialysis. The findings, which come from a study appearing in an upcoming issue of theClinical Journal of the American Society of Nephrology (CJASN), suggest that dialysis facilities have an opportunity to improve patients' health by providing exercise programs.

Physical activity can provide a number of benefits for diverse populations, but its effects in patients on hemodialysis patients are unclear. To investigate, Antonio Alberto Lopes, MD, PhD (Federal University of Bahia, in Brazil), Ronald Pisoni, PhD, MS (Arbor Research for Collaborative Health), and their colleagues studied 5763 patients enrolled in the Dialysis Outcomes and Practice Patterns Study. Patients were classified into 5 aerobic physical activity categories (never/rarely active to very active) and according to muscle strength/flexibility activity using the Rapid Assessment of Physical Activity questionnaire.

Among the major findings:

After a median follow-up of 1.6 years, aerobic activity, but not strength/flexibility activity, was linked positively with health-related quality of life and inversely with depressive symptoms and premature death, with those who were very active being 40% less likely to die during follow-up than those who were never/rarely active.

Similar associations with aerobic activity were observed in subgroups defined by age, sex, time on dialysis, and diabetes status.

In dialysis patients with heart failure, aerobic activity was not linked with prolonged survival, but was associated positively with health-related quality of life and inversely with depressive symptoms.

"In addition, aerobic physical activity levels were found to be higher for patients treated in dialysis units offering an exercise program compared with units not offering an exercise program, pointing to the possibility to improve patient physical activity levels through greater availability of such programs for hemodialysis patients," said Dr. Lopes. "Our results call attention to opportunities for potentially improving the health of patients on hemodialysis through counseling for physical activity and the promotion of exercise programs in nephrology clinics." [Read more]



From Western News, Western University, London, Ontario, Canada, By Paul Mayne
'Cool' idea may help dialysis patients

A simple step developed by a Western researcher may alleviate the potential damage to multiple organs often associated with dialysis, an important treatment for countless patients with kidney disease.

Schulich School of Medicine & Dentistry Professor Chris McIntyre, who arrived from the University of Nottingham last month, said kidney disease patients are caught between a rock and a hard place – they cannot live with or without dialysis.

“Patients die a lot. Your chances of dying on dialysis are about the same as with every single kind of cancer,” said McIntyre, the Robert Lindsay Chair of Dialysis Research and Innovation. “Those who do survive suffer substantial injury that appears to be related to the treatment. It can damage their hearts and other organs, but we’re now starting to appreciate they’re damaging their brain as well.”

Prior to coming to Western, McIntyre and his colleagues studied 73 patients on hemodialysis (where blood is filtered through a machine) where the dialysate was cooled and followed up with them for a year. The findings, published in the Journal of the American Society of Nephrology, showed patients exhibited complete protection against white matter changes in the brain.

“We’ve done a lot of work relating to how the blood pressure, being unstable when you take the fluid off on dialysis, drives that injury,” McIntyre said of patients who normally face a severe drop in blood pressure due to the sudden removal of bodily fluids. “We looked around for techniques that were already established in dialysis to improve the blood pressure and stop these drops, and cooling has been used since the late 1980s.

“So, we applied a technique already available and wanted to see whether or not we’re not just making people feel better, but we can actually get organ protection.”

The technique involves cooling the dialysate temperature to either 37 degrees C, or .5 degrees C below the core body temperature. By doing so, patients were completely protected against blood pressure changes. [Read more]

Gift of Life

From KOB.com Channel 4, Albuquerque, NM

Albuquerque man donates kidney to stranger after seeing Facebook post

An Albuquerque man is calling it a miracle. A complete stranger saw his plea for a kidney donor on Facebook, and after going through several tests, they found out he was a match and is now ready for surgery.

"Am I going to see my family again and am I going to have another Christmas with my family?" Matthew Aguilar asked. "It was just hard "

Aguilar, 39, is battling polycystic kidney disease. While a healthy kidney is the size of a fist, Aguilar's are the size of footballs, swelling with cists and leaving him feeling like he has the flu every day.

"Once my kidneys fail, I only have like two weeks to live, " Aguilar said.

Matthew and his wife Crystal are frequent volunteers at their children's schools on Albuquerque's west side. They help with everything from fixing computers, to serving up lunch in the cafeteria.

After giving back to their community, they put out a plea of their own.

They got a little help from our very own Steve Stucker, who shared the post on Facebook. It was shared all over the world, including places like the Philippines. And finally, Aguilar's prayers were answered.

"If I could save his life, I was willing to sacrifice whatever I had to go through, in order to help him out," Adam Gallegos said.

Gallegos, who lives in Albuquerque, saw the post and decided to get tested. Turns out, he was a perfect match. He met Matthew and instantly made a connection with him and his family. They say they're like brothers now.

The men hope their story inspires others. [Read more]

From Sandpaper.net, Eagleswood, NJ

Spaghetti Dinner to Aid Eagleswood Fireman in Need of Kidney Donor

Since being diagnosed with polycystic kidney disease a few years back, Allan Herdecker of Tuckerton has had an increasingly difficult time managing his health, work and medical expenses. Earlier this year, he had to give up a 26-year career at ShopRite of Manahawkin.

PKD causes fluid-filled cysts to form in the kidneys, which can impair kidney function and lead to kidney failure, as in Herdecker’s case. Three days a week, the 45-year-old fisherman and NASCAR enthusiast drives to and from Saint Barnabas Medical Center to receive dialysis treatments to filter toxins from his blood, while he awaits a lifesaving gift from a living kidney donor. A kidney from a living donor has a higher long-term success rate than a cadaver organ, for which the wait is four to six years.

Now his co-workers and friends have organized a spaghetti dinner fundraiser in his honor, Saturday, Oct. 25, from 4 to 8 p.m. at the Eagleswood Volunteer Fire Co. Herdecker is a member of both the Eagleswood Volunteer Fire Co. and the N.J. State Forest Fire Service. Admission is $10 for adults, $5 for kids, and includes music, games, face painting, raffle drawings and a gift auction.

Additional contributions to offset his medical expenses can be made to his IndieGogo campaign: visit indiegogo.com and search his name. To learn more about Herdecker and how to help, visit facebook.com/akidneyforAllan. —V.F.

PKD Research

From MarketWatch.com, BusinessWire, Press Release

DiscoveryBioMed, Inc. Awarded Dual SBIR Awards for Polycystic Kidney Disease (PKD) Drug Discovery, Validation, Optimization and Development

ST. LOUIS, Oct 07, 2014 (BUSINESS WIRE) -- DiscoveryBioMed, Inc. (DBM, Inc.) learned in recent months that it was awarded a new Phase 1 SBIR grant from the National Institutes of Health (NIH) to perform high-throughput screening (HTS)-based drug discovery and validation to discover novel small molecules that attack the secondary phase of autosomal dominant polycystic kidney disease (ADPKD). Concomitant with this news, DBM, Inc. was also approved to proceed with the Phase 2 portion of a Fast Track SBIR-funded program funded by the NIH to develop a new chemical series into a new chemical entity (NCE) and future drug to fight the initial phases of ADPKD. New future drugs from these dual programs may also have utility in attenuating secretory diarrhea and renal, urologic and other forms of cancer and fibrosis, respectively. The Phase 2 portion of the Fast Track SBIR award also continues to fund a collaboration with the Baltimore PKD Center who is conducting and will continue to conduct proof-of-concept studies in vivo in multiple and different genetic mouse models of ADPKD. Dr. Terry Watnick, M.D. is a Professor of Medicine and the Director of the Baltimore PKD Center based at the University of Maryland School of Medicine in Baltimore, MD. She is a dual PI on the SBIR award and is directing these studies along with Dr. David Huso, DVM, Ph.D. at Johns Hopkins who is Director of Mouse Models and Biobank Core C of the Baltimore PKD Center.

Both SBIR awards were granted by the NIH’s National Institute of Diabetes, Digestive and Kidney Diseases (NIDDK). “DBM is very grateful for the continued support from the NIDDK. Without their grant support and without a vigorous commitment to funding applied and translational research, our efforts would stall and not have acceleration. We are truly humbled by the NIDDK’s funding and guidance,” Dr. Schwiebert pointed out. The new Phase 1 SBIR award also has Dr. Deborah Mai as a dual PI leading the biological assay efforts and Dr. John Streiff continuing to collaborate with chemistry expertise. [Read more]

Running for PKD, Art Can Send a Message

Supporting PKD Research

From The Press, York, United Kingdom, by Alex Ross

Phil Johnson running Yorkshire Marathon to raise awareness of Polycystic Kidney Disease (PKD) Charity

A RUNNER suffering from a rare kidney disease is preparing for an uphill battle to raise awareness of a hereditary condition affecting men in his family.

Phil Johnson, from York, is tackling the Plusnet Yorkshire Marathon on October 12 for Polycystic Kidney Disease (PKD) Charity - a disease the 33-year-old has been diagnosed with along with his eldest and middle brother, as well as many of his uncles and cousins.

The disease is a genetic disorder of the kidneys and often results in patients undergoing transplant operations to prolong their lives.

Phil said: "My goal was to get fit, drop some weight, and more importantly to raise money for the Polycystic Kidney Disease (PKD) Charity, which is very close to my heart.

"I suffer from PKD myself, along with both of my brothers. It has been passed through the family and affects many of my uncles and cousins.

"Over the years some of my uncles have had to undergo transplants, but more recently - just a couple of years ago in fact - my eldest brother was fortunate enough to receive a successful kidney transplant just one year after starting dialysis.

"He had his ups and downs and several stays in hospital through infections, but is now fit and healthy after being given a new lease of life thanks to the organ donor.

"Given all of the support that he received I felt it only right that I help to raise funds to support vital research into this condition which effects so many people."

Phil is being joined on the 26.2-mile course by his brother, a retired regimental sergeant major in the Coldstream Guards, who is running for the Combat Stress charity.

He served 26 years in the armed forces before being diagnosed with PKD.

Phil added: "My longest run so far is 20 miles, and I know that those last six will be pure hell. Yet I also know that crossing that finish line will probably be the single greatest achievement I have ever made."

For up to date marathon coverage and information go to www.thepress.co.uk where you can also join in the fun by sending us your stories, pictures and messages of support or email alexander.ross@thepress.co.uk

To sponsor Mr Johnson visit www.justgiving.com/philjpjohnson

From CNW, Canadian News Wire

Walk with Canadians fighting life-threatening kidney disease

This year marks the PKD Foundation of Canada's 13th Annual Walk for Polycystic Kidney Disease (PKD).

The most common form of PKD is autosomal dominant polycystic kidney disease (ADPKD), which affects 35-66,000 Canadians. ADPKD is the most common, life-threatening, hereditary renal cystic disease and the fourth leading cause of kidney failure.1,2,3,4 Currently, there is no treatment approved to slow the progression of the disease, and if not diagnosed and optimally managed, it can cause irreversible damage.

The Walk for PKD is the PKD Foundation of Canada's signature fundraising event with the goal each year to raise awareness of, and support for, the fight to end PKD. Money raised will go towards research for treatments for PKD as well as education and support services, both online and in local communities. The Walk has raised more than $640,000 since 2007.

Come join us on September 28. A Cure is Our Finish Line.

Using Art to Personalize the Issue to Political Leaders

From ABC News, Australia, By James Purtill

Darwin kidney disease exhibition depicts Tony Abbott and cabinet ministers on dialysis

Prominent Australians including the Prime Minister are depicted on dialysis in a Darwin exhibition about the escalating rate of kidney disease among Aboriginal people.

Artists Chips Mackinolty and Therese Ritchie said the 14 prints, also featuring John Howard and Cate Blanchett, were a call to action for treating and preventing the disease, which is especially prevalent in remote Indigenous communities.

"Aboriginal people are always being depicted as poor buggers and victims because their life experiences are very grim," said Mr Mackinolty, a well-known Darwin identity who has worked with Aboriginal primary health care services.

"This is about turning the tables to see how it would be if prominent influential people had end-stage kidney disease, and they all had to spend five hours a day three days a week on dialysis.

"Aboriginal people in their early 20s are on dialysis. Short of a transplant it is a death sentence."
'Australia's home-grown horror' a leading cause of death

In April this year Kidney Health Australia said diabetes was "out of control".

From 2001 to 2008 the number of Indigenous Australians receiving treatment for end-stage kidney disease increased by 72 per cent.

A recent ABS survey found Indigenous adults experience diabetes 20 years earlier than non-Indigenous adults. One in five Aboriginal adults had chronic kidney disease.

Gift of Life

From Today.com, by Allison Markowitz

'She gives me hope:' Mom's life saved by stranger who donated kidney

Just nine months ago, Andrea Kringstein and Annaleigh Sage Bergman were perfect strangers.

Andrea, a mother of two, suffers from polycystic kidney disease, a genetic condition where cysts grow, slowly causing kidney failure.

“The doctors told me that at a certain level I needed to go on a (transplant) list because my kidneys were going to fail,” Andrea told TODAY.

With no treatment and no cure and her kidney function only at 12 percent, Andrea went on a desperate search to find a match.

She turned to a non-profit website called MatchingDonors.com, a database where patients are introduced to people willing to donate. They don't make any money by donating organs or tissues.


Visit MatchingDonors.com if you’re interested in a living altruistic donor or would like to register as one

“I was reading her profile from top to bottom and feeling like it could've been me,” Sage said. “It was a deep personal connection right away. Talking about her children in her profile really hit me hard because children need their mother.”

After months of grueling tests, doctors finally confirmed Andrea and Sage were a match.

Find out more about becoming a living donor


“She gives me hope, she is an incredible person,” an emotional Andrea recalled.

Over the last 10 years, over 350 patients have received a lifesaving transplant after meeting on the website.

Paul Dooley started the non-profit after doctors told his cancer-stricken father that he needed a kidney transplant too. [Read more]

PKD Research

From Renal & Urology News, by Jody Charnow  Editor

Controlling Hypertension in PKD patients following a renal transplant.

Transplant Plus Native Nephrectomy May Benefit Polycystic Kidney Disease (ADPKD) Patients

Native unilateral nephrectomies in conjunction with renal transplantation in patients with autosomal dominant polycystic kidney disease (ADPKD) can improve control of hypertension, according to study findings presented at the 32nd World Congress of Endourology in Taipei, Taiwan.

A team at Indiana University School of Medicine in Indianapolis led by Chandru P. Sundaram, MD, retrospectively examined hypertension control in 143 ADPKD patients who underwent renal transplantation from 2003 to 2013. William Goggins, MD, performed the transplantation and the concurrent nephrectomies. Dr. Sundaram performed the laparoscopic contralateral native nephrectomies.

Of the 143 patients, 67 underwent transplantation alone and 76 underwent transplantation with concurrent unilateral native nephrectomy. The nephrectomy group included 40 who had a native kidney removed at the time of transplantation and 36 who had a staged contralateral native nephrectomy. The staged nephrectomies were completed in a median of 9.8 months post-transplantation via a laparoscopic approach.

Comparing preoperative to postoperative antihypertensive medication use, patients who underwent native concurrent unilateral nephrectomy had a significantly greater decrease in the mean number of medications at 12, 24, and 36 months follow-up than those who underwent transplantation alone (-1.2 vs. -0.5, 1.1 vs. 0.3, and -1.2 vs. 0.4, respectively).

The nephrectomy patients also experienced significantly greater decreases in defined daily dose (DDD) of antihypertensive drugs at 12, 24, and 36 months (-3.3 vs. -1.0, -2.9 vs. -1.0, and -2.7 vs. 0.6, respectively). Greater hypertension control was achieved in patients undergoing staged completion native nephrectomies. [Read more]