Sunday, December 28, 2014

Thorough Evaluation Coming for Organ Donors; X-mas Gifts of Life

Transplant News

From TribLive, By Luis Fábregas

Lifesaving risks: Thorough evaluations coming for potential organ donors

Before she donated a kidney, friends and relatives questioned Amy Mowry's decision to put herself through risky surgery.

“A lot of people told me I was crazy,” said Mowry, 34, of Penn Township, Butler County. “They told me that I have children to worry about and that all these horrible things could happen.”

Doctors warned her about potential complications. And during surgery, Mowry suffered a torn colon, which she had been told had a less than 1 percent chance of happening. It slowed her recovery, but she has no regrets.

“I would totally do it again, even with the complication,” said Mowry, who donated a kidney to Rose Stafura of Cranberry, whom she met only a few weeks before the surgery.

About 6,000 people a year choose to donate an organ while alive, often to someone they know but sometimes to a stranger. Despite good intentions, some fail to fully understand the risks of the surgery, experts said.

The United Network for Organ Sharing, the nonprofit that runs the nation's organ transplant system, in February will put in place policy that calls for donors to undergo more thorough medical and psychosocial evaluation and screening. Experts worried that earlier guidelines lacked consistency.

“It's very important to understand, as best as we can, why an individual is coming forward to do this,” said Mary Amanda Dew, chairwoman of the UNOS living donor committee and a professor of psychiatry at the University of Pittsburgh. “Their motives are important because we don't want anyone to feel pressure or coerced to do this.”

In their eagerness to help someone, potential donors don't realize the complexity of the surgery, Dew said.

Some advocates say it's not possible to give donors comprehensive information about risks because there is no national database tracking the health of donors after surgery. UNOS tracks kidney donors for two years but does not plan to extend the requirement, a spokeswoman said.

“How can we tell them about risks if there's no database with long-term information?” said Dr. Lainie Ross, associate director of the MacLean Center for Clinical Medical Ethics at the University of Chicago. “We aren't following them long-term, and that's a real problem.”

‘POTENTIAL FOR HARM'

The new policy outlines components of a donor evaluation that includes screening for infectious diseases, cancers, diabetes and hypertension. It details reasons that someone could be ruled out as a donor, including mental illness or suspicion that the donor was pressured to undergo the surgery.

The guidelines apply to people who want to donate kidneys, livers, lungs, intestines or pancreases. Transplant centers must give donors data on the survival of recipients at the center performing the surgery. [Read more]




Gift of Life

From Lurgan Mail, Portadown, Northern Ireland, UK

Justin receives the gift of life

A Donaghcloney man has received the ultimate gift in time for Christmas - the donation of a kidney from his friend.

Justin Weir, who suffers from the hereditary polycystic kidney disease, had been waiting for a suitable kidney since May 2011, when both of his organs had to be removed, and was relying on dialysis to stay alive.

For 13 and a half hours per week Justin was on dialysis.

On November 25 the wait was over for Justin and he gratefully received a kidney from his friend of 12 years from Portadown man Mark Boyce, who had kept it a secret from Justin that he was hoping to give him his kidney.

The first thing Justin knew of his friend’s generosity came in an out-of-the-blue text.

Justin, who is married to Sharon and has two sons - Jordan and Joshua - said: “Mark was talking about the great view from the 11th floor. At first I thought he was away in an hotel somewhere.

“But the renal unit is on the 11th floor at the City Hospital and then I thought there might be something wrong with him so I phoned him. All I could do was say, ‘Thank you’.”

Justin, a Theology student at Belfast Bible College, had already endured ‘false dawns’ - he had been called for transplant three times but on each occasion his blood had proved incompatible.

And, on the day of the operations, Justin insisted on being wheeled down to the recovery ward and making sure that Mark was okay before allowing the kidney to be transplanted.

Mark, who plays for Bourneview FC, said, “I could see Justin’s health deteriorating. Going out and doing normal things was becoming impossible for him and he was really starting to miss out on his kids growing up.

“I knew his wife Sharon had been tested to become a living donor and she was a match, but not a great one, so I started making a few enquiries of my own.”

Unusually for a non-relative, Mark’s kidney tissue was found to be a very good match for Justin’s.

Said Mark: “I didn’t want to tell him until I knew for sure because I didn’t want to get his hopes built up.”

Mark, a married father of two who is a committed Christian, said that once he had made up his mind to donate his kidney he had no second thoughts.

He said: “My wife and I prayed about it and we were both satisfied I was doing the right thing. You can live a full, normal, healthy life with one kidney.

“I think family and friends were obviously concerned but life is full of ‘what ifs’. What if I died at 95 with two perfectly healthy kidneys and hadn’t done anything to help?

“This will hopefully be the start of a new life for Justin.”

Justin has had a few minor setbacks since the operation but is now at home and taking his recovery one step at a time. Last week, his brother was also undergoing a transplant, with a kidney from his wife.

Meanwhile, Northern Ireland’s first Organ Donation Family Discussion Day took place last week, encouraging families to sit down with their loved ones and discuss organ donation.Even though someone is on the organ donor register, donation will only proceed if their family consents. This is often where the system fails, as many families aren’t aware of their relatives’ wishes.





From The Morning Call, Pottstown, PA, By Dan Sullivan

Co-worker gives gift like no other - a functioning kidney

                 Lehigh Valley Health Network 1000th organ transplant


Cherie Hessler of Pottstown doesn't need presents under her Christmas tree this year.

That's because Hessler recently received a gift like no other— a healthy functioning kidney from her longtime friend and coworker Connie Harris of Philadelphia.

For Lehigh Valley Health Network, the organ transplant that occurred on Nov. 5 took on even more meaning.

Hessler's new kidney was the network's 1,000th organ transplant since 1991.

LVHN marked the occasion, bringing Hessler and Harris together on Monday to share their story.

Hessler was diagnosed with polycystic kidney disease last year at age 36. By November her kidneys had failed.

She was the same age her own mother was when diagnosed with the same disease.

Hessler's mother underwent two transplants, one performed in Philadelphia that failed after 18 days and put her back on a waiting list for another three years, and a second performed in the Lehigh Valley in 1995, which made her LVHN's 97th transplant patient. Hessler's mother died of complications related to a heart infection in 2009.

Harris, who works with Hessler at Paychex Inc. in Norristown, wanted to find a way to untether her friend from daily dialysis. [Read more]



From WCVB, ABC Affiliate, Boston, MA

Melrose man receives kidney from former classmate

Long-ago friend responds to email plea with life-saving gift

It's the season for giving, but David Shakespeare knows he's already received the gift of a lifetime.

"I was very confident that one way or the other, I was going to get a kidney," he said.

Watch NewsCenter 5's report

Just months ago, Shakespeare's kidney was failing from an inherited disease called polycystic kidney disease or PKD.

It affects about 600,000 people in the United States and has no cure. Shakespeare's mother and older brother both died from the disease.

"Basically what happens is that multiple cysts grow and crowd out the function of the kidney," he explained.

As Shakespeare's disease progressed, he realized he needed a transplant.

Patients have two options. They can wait to receive one from a deceased donor or find someone willing to live with one kidney so they can use the other.

"It's just kind of awkward," Shakespeare said about the process of asking. "I'm not comfortable using social media to begin with, but then going the next step further of being very candid and open about my need for a kidney, it feels kind of weird. But I realized this is what I've got to do."

David created a website and found students to hang posters on campuses.

He sent emails to everyone he knew, including one to Nancy Stockford, a college friend that he hadn't seen in years.

"There was just something about it that made me think, 'This is a thing that I could do,'" Stockford recalled. "And it just made so much sense."

But she didn't tell Shakespeare right away.

Instead, Stockford decided to wait to go through the entire evaluation process at Massachusetts General Hospital just in case she changed her mind. She didn't.

Doctors then confirmed her kidney was the perfect match for Shakespeare.

"They called to tell me that I'm a good candidate," she said. "And I could go ahead and let him know."

"I was just totally blown away," Shakespeare said, shaking his head. "I was sitting at my desk at work and almost speechless, I guess. And just incredibly grateful and happy."

"I mean it was a little abrupt," Stockford agreed. "But it was a fun call to make!" [Read more]




PKD Research

From WhaTech.com, Submitted by Vijay Pathania

Explore polycystic kidney disease (PKD) therapeutics pipeline assessment and market forecast to 2019


The report identifies the key trends shaping and driving the global Polycystic kidney disease Therapeutics market. The report also provides insights on the prevalent competitive landscape and the emerging players expected to significantly alter the market positioning of the current market leaders.

The industry analysis specialist, has released its new report, “Polycystic Kidney Disease (PKD) Therapeutics - Pipeline Assessment and Market Forecasts to 2019”. The report is an essential source of information and analysis on the global Polycystic kidney disease Therapeutics market. Most importantly, the report provides valuable insights on the pipeline products within the global Polycystic kidney disease Therapeutics sector. This report is built using data and information sourced from proprietary databases, primary and secondary research and in-house analysis by GlobalData’s team of industry experts.

Browse Full Report @ http://www.jsbmarketresearch.com/healthcare-medical/r-polycystic-kidney-disease-pkd-therapeutics-pipeline-assessment-and-market-forecasts-135214

The report provides information on the key drivers and challenges of the Polycystic kidney disease Therapeutics market. Its scope includes -

- Annualized seven key markets (US, France, Germany, Italy, Spain, UK and Japan) Polycystic kidney disease Therapeutics market revenues data from 2006 to 2011, forecast for eight years to 2019.
- Pipeline analysis data providing a split across the different phases, mechanisms of action being developed and emerging trends by seven key markets. Pipeline candidates fall under major therapeutic classes.
- Analysis of the current and future competition in the seven key countries Polycystic kidney disease Therapeutics market.
- Insightful review of the key industry drivers, restraints and challenges. Each trend is independently researched to provide a qualitative analysis of its implications.
- Key topics covered include strategic competitor assessment, market characterization, unmet needs and the implications for the Polycystic kidney disease Therapeutics market.
- Analysis of key recent licensing and partnership agreements in Polycystic kidney disease Therapeutics market [Read more]

Sunday, December 21, 2014

Seeing Cilia; Organ Regisrty Hope; Dialysis Museum in Seattle

PKD Research

From MedicalXpress

New technique provides novel approach to diagnosing ciliopathies


Cilia, the cell's tails and antennas, are among the most important biological structures. They line our windpipe and sweep away all the junk we inhale; they help us see, smell and reproduce. When a mutation disrupts the function or structure of cilia, the effects on the human body are devastating and sometimes lethal.

The challenge in diagnosing, studying and treating these genetic disorders, called ciliopathies, is the small size of cilia—about 500-times thinner than a piece of paper. It's been difficult to examine them in molecular detail until now.

Professor Daniela Nicastro and postdoctoral fellow Jianfeng Lin have captured the highest-resolution images of human cilia ever, using a new approach developed jointly with Lawrence Ostrowski and Michael Knowles from the University of North Carolina School of Medicine. They reported on the approach in a recent issue of Nature Communications.

About 20 different ciliopathies have been identified so far, including primary ciliary dyskinesia (PCD) and polycystic kidney disease (PKD), two of the most common ciliopathies. They are typically diagnosed through genetic screening and examination of a patient's cilia under a conventional electron microscope.

The problem is, conventional electron microscopy is not powerful enough to detect all anomalies in the cilia, even when genetic mutations are present. As a result, the cause of ciliary malfunctions can be elusive and patients with ciliopathies can be misdiagnosed or undiagnosed.

Nicastro and her team developed an approach that includes advanced imaging technique that entails rapidly freezing human samples to preserve their native structure, imaging them with transmission electron microscopy, and turning those images into 3D models. This cutting-edge imaging was in part made possible by the advanced instrumentation in the Louise Mashal Gabbay Cellular Visualization Facility at Brandeis. It is the first time this approach has been used on human cilia and patient samples.




Kidney News

From The Journal Gazette, Fort Wayne, Indiana, by Chris Meyers

Turning 16 - and in line for a new kidney


Fundraiser to assist in transplant process

Noel Resor deals with a lot of the things life throws at a typical teenager.

There is a struggle she faces, though, that not many others her age do.

It’s a kidney disease with a long, complicated name, and it will keep her dealing with dialysis or kidney transplants her entire life.

“It’s not even a day at a time; it’s a moment at a time,” Resor said of living with focal segmental glomerulosclerosis.

The disease attacks and scars kidneys, eventually disabling their filtering abilities.

Diagnosed in May 2013, Resor, who turns 16 today, is finally poised to make it on the kidney transplant list.

A fundraising drive is under way to help with costs when the time for a transplant comes, and the latest fundraising effort was Friday evening.

Live music at the Starbucks on West Jefferson Boulevard and free-will donations brought the total raised to about $33,000.

The goal is $75,000, with donations possible at www.cotafornoelr.com, a site sponsored by the Children’s Organ Transplant Association.

Although a new kidney will make life a little less complicated, it doesn’t come with any guarantees for a full cure or recovery.

About 40 percent of new kidney recipients have the condition return after surgery, according to COTA.

Getting ready for the donation list has been no easy feat. Medications she was on delayed when she was eligible, plus working through other obstacles slowed down the process.

“We have now cleared all the hurdles with paperwork and insurance,” said Mark Resor, Noel’s dad.

The search for a donor also continues, with Kathy Carnes, registered nurse and transplant coordinator at Indiana University Transplant Center in Indianapolis, heading up the effort. Carnes can be reached at 317-944-4370 by anyone who knows of an interested donor. [Read more]



From IndyStar, Indianapolis, Indiana, by Shari Rudavsky

Four lives, two kidneys and one organ registry that made it all happen

IMG_1022.JPG



The two kidneys could have passed in the air somewhere over Tennessee.

Dinah Sampson's organ traveled last week to a South Carolina transplant center, where surgeons then placed it in the body of a person Sampson had never met.

At about the same time Indianapolis surgeons were removing her kidney, a stranger in South Carolina underwent the same procedure there. That kidney would then have to be ferried to the airport and flown to Indianapolis.

Just as Sampson's kidney was transplanted into the South Carolina patient, surgeons in a St. Vincent operating room replaced the failing kidney of Sampson's father with one that had started the day in a South Carolina stranger's body.

Two healthy donors, two sick recipients. In organ transplant circles, the whole procedure is called a kidney swap. But to Sampson and her father, Ed Hanson, a better phrase might be lifesaver.

Spring 2014.For the past seven years, Hanson's kidney function had been failing. His nephrologist told him to expect to need dialysis soon. In April, the day came and the Porter County man started at-home peritoneal dialysis.

The alarm on the machine he used at night went off every two hours, interrupting his sleep. So, he switched to manual dialysis, which required him to hook up to an IV pole four times a day.

In June, St. Vincent came to his local dialysis center to pitch their relatively new transplant program, which they offered in collaboration with Cleveland Clinic surgeons. Hanson, 66, was intrigued.

Summer 2014.As Hanson started preliminary testing for a transplant, his daughter Dinah Sampson, 36, stepped forward to give him a kidney of her own.

"I feel like it's just a foregone conclusion, anything I can do to help him," she said. "I was open to anything that could give him a kidney."

On Aug. 21, Hanson was approved to go on the lengthy waiting list for a kidney from a deceased donor.

The next day, Sampson started her own testing. She knew it would be a long shot. Her blood type was A and his O, making them most likely incompatible. But about 20 percent of people with blood type A can donate to those with O, said Tami Rader, living donor transplant coordinator at St. Vincent Health. On Sept. 5, the family learned that Sampson did not fall in that 20 percent. [Read more]




Portadown Times, United Kingdom

Gift of life as Mark donates kidney

Kidney donor Mark Boyce and recipient Justin Weir.  INLM5014-452


A Portadown man has made the ultimate gift, by donating one of his kidneys to a friend.

Mark Boyce, who plays for Bourneview FC, is already making a speedy recovery after the operation just over a fortnight ago.

One of his kidneys was transplanted into his friend of 12 years, Donaghcloney man Justin Weir, who suffers from the hereditary polycystic kidney disease.

Justin had been waiting for a suitable kidney since May 2011, when both of his organs had to be removed, and was relying on dialysis to stay alive.

Mark (30), who is married to Judith and has two children, said, “I could see Justin’s health deteriorating. Going out and doing normal things was becoming impossible for him and he was really starting to miss out on his kids growing up.

“I knew his wife Sharon had been tested to become a living donor and she was a match, but not a great one, so I started making a few enquiries of my own.”

Unusually for a non-relative, Mark’s kidney tissue was found to be a very good match for Justin’s.

Said Mark, “I didn’t want to tell him until I knew for sure because I didn’t want to get his hopes built up.”

The first thing Justin knew of his friend’s secret tests came in an out-of-the-blue text. He said, “Mark was talking about the great view from the 11th floor. At first I thought he was away in an hotel somewhere.

“But the renal unit is on the 11th floor at the City Hospital and then I thought there might be something wrong with him so I phoned him. All I could do was say thank you.”

Justin had already endured false ‘dawns’ - he had been called for transplant three times but on each occasion his blood had proved incompatible.

And, on the day of the operations, Justin insisted on being wheeled down to the recovery ward and making sure that Mark was OK before allowing the kidney to be transplanted.

Mark, who is a committed Christian and a member of St Francis Church of Ireland, Annaghmore, said that once he had made up his mind to donate his kidney he had no second thoughts. [Read more]





From Las Vegas Review-Journal, By DONNA GORDON BLANKINSHIP, AP

5 of the weirdest museums in the US

Visit our dialysis museum

DIALYSIS MUSEUM AT NORTHWEST KIDNEY CENTERS, SEATTLE
Seattle has many unusual if obscure attractions — like the gum wall at the Pike Place Market. Here’s another one that’s a bit more educational: a dialysis museum.
The Northwest Kidney Centers opened the free museum two years ago to celebrate its 50th anniversary as a pioneering medical treatment center. People who find old medical devices intriguing and those whose lives have been touched by kidney disease are most likely to seek out this display.
The museum shows the history of dialysis through machines and photographs including some early hospital models from the 1940s, and home and travel machines from the 1960s. Some machines were one-of-a-kind devices created with spare parts, including a “traveling kidney” in a suitcase. Details: http://www.nwkidney.org .

Sunday, December 14, 2014

PKD and More: Blame it on Cilia; Know When Kidneys are Failing; Old and Need a Kidney - Good Luck

PKD Research

From Scientific American, By Joshua A. Krisch

Why Scientists Are Blaming Cilia for Human Disease

Hairlike structures on cells may play a role in a host of genetic disorders, including kidney degeneration, vision impairment and even some cancers


Scientists now believe that a number of genetic disorders, from polycystic kidney disease to some forms of retinal degeneration, can ultimately be traced back to cilia—bristly, hairlike structures that dot cell surfaces.

In a review article published in the December 1 BioScience, George B. Witman, a cellular biologist at the University of Massachusetts Medical School, highlighted the growing body of evidence that abnormal or absent cilia can cause a wide range of human disorders, dubbed “ciliopathies.”

“Kidney disease and blindness, multiple digits, shortened bones or extremities, obesity—all of these things, it turns out, are due to defects in cilia,” he says. Experts add that the discovery of a common thread between these disparate disorders may eventually help researchers develop gene-based therapies to combat those conditions.

At first blush, cilia seem relatively innocuous. As they beat back and forth outside the cell, coordinated brushes of so-called motile cilia regulate fluid flow nearby. But almost all human cells also have one primary, or nonmotile, cilium that functions more like a molecular antenna. The primary cilium is an internally dynamic structure, packed with proteins that detect and convey important messages to its cell about the local environment. “The signaling machinery is concentrated in the cilia,” Witman says. “All in this very tightly controlled, constrained space.”

Effective cellular communication is especially important for a developing embryo. If faulty molecular antennae cut off or warp a signal in these early stages, the resulting miscommunication can disrupt organ formation. For that reason, “when you have defects in these cilia, you get a lot of congenital diseases,” Witman says.

The most common ciliopathy is polycystic kidney disease (PKD), which affects about 12.5 million people worldwide. Almost all patients face renal failure as multiple fluid-filled sacs (cysts) clog their kidneys and prevent blood purification. In 2000 Witman was part of the team that identified a gene responsible for cilia growth in green algae and noticed that it was nearly identical to a mouse gene that, when defective, caused polycystic kidney disease.

Scientists later learned that defects in that same gene cause malformed or absent cilia, which contribute to the formation of dangerous cysts in human kidneys. As urine flows through the channels and chambers of the kidney it bends the primary cilia, which act like sensors for fluid flow. “If you don’t have those cilia, you get these cysts that come up in the kidney,” says Ketan Badani, director of the Comprehensive Kidney Cancer Program at Mount Sinai Hospital in New York City.

Although scientists had known about the existence of primary cilia since the late 1800s, Witman’s study prompted researchers to revisit the structures that they had once assumed served minimal purpose. “Suddenly there was this idea that the primary cilium was a signaling system and that you had to put specific receptors into the primary cilium to prevent a pathology—in this case, polycystic kidney disease,” says Peter Satir, professor of anatomy and structural biology at Albert Einstein College of Medicine who was not involved in the research. “But then it turned out that that wasn’t the only pathology related to receptors in the primary cilium.” [Read more]




From MedicalXpress, by Karen Kreeger


Frequent kidney dialysis is essential for the approximately 350,000 end-stage renal disease (ESRD) patients in the United States. But it can also cause systemic inflammation, leading to complications such as cardiovascular disease and anemia, and patients who rely on the therapy have a five-year survival rate of only 35 percent. Such inflammation can be triggered when the complement cascade, part of the body's innate immune system, is inadvertently activated by modern polymer-based dialysis blood filters. New work by Penn researchers has found an effective way to avoid these problems by temporarily suppressing complement during dialysis. Their work appears online in Immunobiology ahead of print.

Over the past several years, lead author John Lambris, PhD, the Dr. Ralph and Sallie Weaver Professor of Research Medicine, Perelman School of Medicine at the University of Pennsylvania, and his colleagues have developed small molecule versions of the drug compstatin, which inhibits a component of the complement immune response called C3. Lambris explains that this next-generation compound, called Cp40, "is a small peptide similar to cyclosporine in many aspects, however it uses a different mechanism of action."

Previous studies by Lambris and his team, in which modern polymer-based hemodialysis filters were perfused with human blood, showed significant complement activation and an increase in inflammatory biomarkers. This response could be suppressed using compstatin, suggesting that it might be used in dialysis to decrease the inflammatory response side effect. [Read more]





Living With PKD

From WLTX, CBS Affiliate, Manning, SC

The Mayor of Manning Ready For A New Kidney

Julia Nelson is suffering from Polycystic Kidney Disease, which is a genetic disease that exempted anyone in her family from being a donor for her.

A year ago the mayor of Manning Julia Nelson learned she was in the fight for her life and she needed a kidney. In an effort to get one, she went public and received tremendous support.

Nelson is suffering from Polycystic Kidney Disease, which is a genetic disease that exempted anyone in her family from being a donor for her.

" Several of my friends and people I didn't know signed up to try to give me a kidney," said Nelson.

Henry Well with the National Kidney Foundation in Columbia says there are resources out there, like the "Living Organ Exchange", where people like Nelson can go for help.

"Some people may not have a brother or sister who can donate a kidney but their kidney may match somebody else in another state or another region in the country where they can literally exchange kidneys", said Well.

Which is exactly what's happened for Nelson, working through the Living Organ Exchange, she's found a match and soon she'll get a new kidney.

"I'll get a second chance at life", said Nelson.




From Nigerian Observer

Know When Your Kidneys Are Failing!

KIDNEY

MANY people who have chronic kidney disease don’t know it because the early signs can be very subtle. It can take many years to go from Chronic Kidney Disease (CKD) to kidney failure. Most people with CKD live out their lives without even reaching kidney failure. People with stage 3 CKD have about an 80% chance of never having their kidneys fail.
At any stage of kidney disease, knowledge is power. Knowing the symptoms of kidney disease can help you get the treatment you need to feel your best. If you or someone you know has one or more of the following symptoms of CKD, or you worry about kidney problems, see a doctor for blood and urine tests. Remember, many of the symptoms can be caused by other health problems. The only way to known the cause of your symptoms is to see a doctor.

Symptom 1: Changes in urination
Kidneys make urine, so when the kidneys are failing, the urine may change. How?
You may have to get up at night to urinate
Urine may be foamy or bubbly
You may urinate more often, or in greater amounts than usual, with pale urine.
You may urinate less often or in smaller amounts than usual, with dark coloured urine.
Your urine may contain blood.
You may feel pressure or have difficulty urinating.
What patients said:
“When you go to use the restroom, you couldn’t get it all out. And it would still feel just like fightness down there, there was so much pressure”.
“My urine is what I had started noticing. Then I was frequently going to the bathroom and when I got there nothing’s happening. You think, they, I’ve got to go to John; and you get there, 2, 3 drops”.
“I was passing blood in my urine. It was so dark it looked like grape Cool-Aid. And when I went to the hospital they thought I was lying about what colour it was”.

Symptom 2: swelling
Failing kidneys don’t remove extra fluid, which builds up in your body causing swelling in the legs, ankles, feet, face, and/or hands.
What patients said:
“I remember a lot of swelling in my ankles. My ankles were so big I couldn’t get my shoes on”.
“My sister, her hair started to fall out, she was losing weight, but her face was really puffy, you know, and everything like that, before she found out what was going on with her”.
“Coving to work one morning, my left ankle was swollen, real swollen, and I was very exhausted just walking to the bus stop. And I knew then that I have to see a doctor”.

Symptom 3: Fatigue:
Healthy kidneys make a hormone called erythropoietin (a-rith-ro-po’-un-tin), or EPO, that tells your body to make oxygen carring red blood cells. As the kidneys fail, they make less EPO with fewer red blood cells to carry oxygen, your muscles and brain tire very quickly. This is anemia, and it can be treated.
What patients said:
“I was constantly exhausted and didn’t have any pep or anything”.
“I would sleep a lot. I’d come home from work and get right in that bed”.
“It’s just like when you’re extremely tired at the time. Fatigued, and you’re just drained, even if you didn’t do anything, just totally drained.

Symptom 4: Skin Rash/Itching
Kidneys, remove wastes from the blood stream. When the kidneys fail, the build-up of wastes in your blood can cause severe itching.
What patients said:
“It’s not really a skin itch or anything. It’s just right down to the bone. I had to get a brush and dig. My back was just bloody from scratching it so much”.
“My skin had broke out, I was itching and scratching a lost”.

Symptoms 5: Metallic taste in mouth/ammonia breath
A build-up of wastes in the blood (called uremia) can make food taste different and cause bad breath. You may also notice that you stop liking to eat meat, or that you are losing weight because you just don’t feel like eating.
What patients said:
“Foul taste in your mouth. Almost like you are drinking iron” “you don’t have the appetite you used name”.
“Before I started dialysis, I must have lost around 10 pounds.

Symptom 6: Nausea and vomiting
A severe build-up of wastes in the blood (uremia) can also cause nausea and vomiting loss of appetite can lead to weight loss.
What patients said:
“I had a lot of itching, and I was nauseated, throwing up all the time. I couldn’t keep anything down in my stomach”.
“When I got the nausea, I couldn’t eat and I had a hard time taking my blood pressure pills”.

Symptom 7: shortness of breath
Trouble catching your breath can be related to the kidneys in two ways. First, extra fluid in the body can build up in the lungs. And second, anemia (a shortage of oxygen-carrying red blood cells) can leave your body oxygen starved and short of breath.
What patients said:
“At the times when I get the shortness of breath, it’s alarming to me. It just fears me. I think may be I might fall or something so I usually go sit down for a while”.
“I couldn’t sleep at night. I couldn’t catch my breath, like I was drowning or something, and bloating, can’t breathe, can’t walk anywhere. It was bad”.
“You go up a set of stairs and you are out of breath, or you do work and you get tired and you have to stop”.

Symptom 8: feeling cold
Anemia can make you feel cold all the time, even in a warm room.
What patients said
I notice sometimes I get really cold, I get chills”.
“Sometimes I get really, really cold. It could be hot and I would be cold.”

Symptom 9: Dizziness and trouble concentrating
Anemia related to kidney failure means that your brain is not getting enough oxygen. This can lead to memory problems, trouble with concentration, and dizziness.
What patients said:
“I know I mentioned to my wife that my memory I couldn’t remember what I did last week, or maybe what I had 2 days ago. I couldn’t really concentrate, because I like to work crossword puzzles and read a lot”.
“I was always fired and dizzy”.
“It got to the point, like I used to be at work, and all of a sudden I’d start getting dizzy. So I was thinking may be it was my blood pressure or else diabefes was going bad. That’s what was on my mind”.

Symptom 10: leg/flank pain
The most common causes of CKD do not cause any pain. And, much of the pain that is near the kidneys is not cause by a kidney problem. But some people who have CKD do have pain some people with kidney problems may have pain in the upper back (where the kidneys are) or on the same side as the affected kidney.
Polycystic kidney disease (PKD), which causes large, fluid-filled cysts on the kidneys and sometimes the liver, can cause pain.
Kidney infections and kidney stones can cause severe pain, often in spasms.
Bladder infections can cause burning when you urinate. People who have medullary sponse kidney say it is painful.
What patients said:
“About 2 years ago, I was constantly going to the bathroom all the time, my back was always hurting and I was woundering why and they diagnosed kidney problem.
“And then you’re having to get up all time through the night and then you have the side ache, a backache, and you can’t move”.
“At night, I would get a pain in my side. It was worse than labour pain. And I would be crying and my husband would get up, everybody, rubbing my legs”.

Risk factors for CKD
When you have a risk factors, it means you are more likely to have a problem than someone who does not have it. But it doesn’t mean that you will definitely have the problem.
Some risk factors like your age or family history, are out of your control. But you can control other risk factors and perhaps slow down or even prevent some diseases. For instance, keeping your blood pressure and sugar in their target ranges may help your kidneys work longer. First, know your risk factors for CKD, then work with your doctor to prevent or delay kidney failure.
Kidney disease risk factors you can change

Diabetes
Type 2 diabetes is the number one cause of kidney failure. There is no such thing as “a touch of the sugar 44% of new dialysis patients have diabetes.
What you can do
Kidney disease does not have to happen to people with diabetes. Good blood pressure and blood sugar control can help prevent it tight control can have big pay offs in reducing the risk for kidney disease. It can also help protect your blood vessels, limbs and eyes.
High blood pressure (hypertension)
High blood pressure puts extra stress on all of your blood vessels, including your tiny, fragile kidney filters (nephrons). Hypertension is the number two cause of kidney failure.
Normal blood pressure is less than 130/85 this is the target for the general public.
If you have diabetes or protein in your urine, the target is 125/75.
Weight control, exercise, and medications can control blood pressure keeping your blood pressure in the target range can help prevent or slow the rate of CKD.

What you can do:
Take blood pressure pills as they are prescribed so they will work properly. It is not true that you can “feel” high blood pressure it can have no symptoms at all. If you can’t afford your blood pressure pills or they have side effects you can’t live with, tell your doctor. He or she can give you samples, switch you to a less costly drug or suggest of the options for you.

Two classes of blood pressure medications can help protect the kidneys, especially if you have protein in your urine. These are:
(1) Angiotensin-converting enzyme (ACE) inhibitors generic names end in “pril”- catopril, ramipril, etc.
(2) Angiotensin receptor blockers (ARBs) generic names end in “sartain” – telmisartan, valsartan, I sartan, olmisartan.
If you have high blood pressure and are not taking one of these drugs, ask your doctor if it would be a good choice for you.
Other risk factors that we will consider subsequently are: block ages, over use of pain killers and allergic reactions to antibiotics (water out for drugs with these ingredients – Ibuprofen (Advil, motrin) Naproxen (Aleve), Acetaminophem (TylenoI), Drug abuse, inflammation, x-ray Dye tests, etc.

There are kidney disease risk factors you can’t change but should know about them, i.e a family history of kidney disease, premature birth, age, trauma or accident, certain diseases – diabetes, high blood pressure, systemiclupus, erythematosus (a connective tissue disease), sickle cell anemia, cancer, AIDS, Hepatitis c, congestive heart failure, etc.




From Bloomberg View, By Virginia Postrel

Old, Sick and Need a Kidney? Good Luck

When I donated a kidney to a friend in 2006, there were about 66,000 people on the national waiting list for kidney transplants. At the time, that seemed like an enormous number. But it was tiny compared to today. As of the end of November, nearly 102,000 Americans were officially waiting for kidneys.

Despite a record 11,163 kidneys transplanted from deceased donors in 2013, an ever-growing waiting list seems inevitable. With an aging population and increasing rates of diabetes -- the most common cause of kidney failure -- more and more people are developing kidney disease. Although transplant centers have gotten very good at persuading the bereaved families of deceased potential donors to give the “gift of life,” too few people die in ways that keep their organs healthy for transplant. The waiting list reflects an absolute physical shortfall.

Within a few years, new rules about allocating kidneys, which went into effect last week, could shrink the waiting list. But this apparent improvement will be an illusion -- an artifact of the incentives the new rules create, not genuine progress. Changing who gets priority for scarce kidneys will help some patients and hurt others, and it might squeeze out a few more total years of healthy living for the lucky recipients. But a different process for managing the existing supply of kidneys won’t make a serious difference for the skyrocketing number of patients who need transplants.

In the past, how long you’d been on the waiting list was the main factor that determined how close you were to getting a compatible kidney. (Some blood types are harder to match than others, so someone with less compatible type O blood would wait longer than someone with type A.) The longer you waited, the further you moved up the list. The clock started when your transplant center did the necessary tests and listed you as a transplant candidate.

The old system hurt those patients, most of whom were black, who had spent years on dialysis before they got referred for transplants, whether because of medical factors, insufficient health insurance or complacent nephrologists. (About a third of the patients, about 35,000 people, currently on the waiting list are black.) The new system instead starts the clock when a patient goes on dialysis.

“In the previous system, it would make sense to list somebody even if they weren’t quite ready to get a transplant, so they could accrue waiting time,” Benjamin E. Hippen, a transplant nephrologist at Carolinas Medical Center in Charlotte, North Carolina, explained in an interview. Now, since they won’t have a shot at a kidney for years, there’s no reason to put them on the waiting list so soon. “It’s going to look like the overall list has shrunk,” he predicted, “when really it’s just a strategic move by the transplant center.”

While arguably fairer, counting dialysis years creates much more uncertainty. Every time a new patient is added, that person’s dialysis history rejiggers the list. It’s like waiting for an airline upgrade: If you’re a lowly gold status member, you may start out at the head of the line, only to end up in coach as platinum and executive platinum travelers put in their requests and push you down the queue. In this case, there’s a lot more at stake than more legroom and better meals.

The new system also changes who qualifies for which kidney. Its primary goal is to get more years out of each organ, essentially by matching younger, healthier patients with younger, healthier organs. Assuming the statistical models are correct, better matching is supposed to give kidney recipients an additional 9,000 years of life -- a number that sounds huge but amounts to less than one additional year per transplant patient. (When potentially compatible organs come up, the system also gives high priority to hard-to-match “sensitized” patients, often previous transplant recipients, who have developed many antibodies that can cause their bodies to reject most transplants.) [Read more]

Sunday, December 7, 2014

Blood Pressure Meds to Treat PKD; Transplant Quiz, New Transplant Rules Include Dialysis Time

PKD Treatments

From KSHB, Channel 41, Kansas City

University of Kansas Medical Center using new treatment for polycystic kidney disease

There is new hope for people living with kidney disease.

Researchers with the University of Kansas Medical Center are using blood pressure medication to treat Polycystic kidney disease.

It's a condition that enlarges the kidneys until the patient eventually has to go on dialysis or get a transplant.

The disease is hereditary and currently has no cure, and that's why Anne Bartels was willing to take part in the nine-year-long trial.

"I think I’m trying to prevent future generations from going through it. I'm hoping my kids don't have to suffer, like I've seen my family members suffer,” said Bartels.

The treatment requires patients to live a healthier lifestyle. {See video]




Gift of Life

From News Observer, Chapel Hill, NC, by CAROL OFFEN


Question: If Mary donates one of her kidneys to John, Mary will have one left. How many will John have? (A) one, (B) two or (C) three.

Most of the time, the correct answer is (C). If leaving the failing kidneys in place isn’t causing a problem (say, high blood pressure), the surgeon will just tuck the third one into the patient’s belly.

It’s one of the many little-known facts about living kidney donation, a medical marvel that remains shockingly underused.

Living kidney donation has become simpler, safer and easier on the donor thanks to minimally invasive laparoscopic surgery. Yet the number of such transplants each year in the United States has been dropping almost steadily, down 14 percent over the past decade, with only 5,733 last year (about a third of all kidney transplants).

Meanwhile, the waiting list for a kidney from a deceased donor has surpassed 100,000 – and about 12 kidney patients die each day nationwide while often waiting years for a transplant.

Given that a kidney from a living donor often provides a better match, lasts about twice as long as one from a cadaver, usually starts working immediately and allows the surgery to be scheduled at an optimal time, the case for increasing living donation is compelling.

Congress and the public health community have been exploring innovative ways to attract more donors: with financial or in-kind incentives, such as college tuition – controversial because of the taint of turning body parts into saleable commodities – as well as reasonable accommodations such as ensuring that a donor would go to the top of a transplant list if the remaining kidney ever failed.

As a living kidney donor, I offer my own modest proposal: Let’s demystify kidney donation.

We’ve done it with breast cancer. Just as BRCA1 and BRCA2 genes have become part of the national conversation, so can CKD (chronic kidney disease) and PKD (polycystic kidney disease).

Clearly, many more people would be willing to consider donating a kidney – be it for a family member, a friend or even a stranger – if they were more familiar with the process and knew what it was like today.

Question: How long does a kidney donor stay in the hospital after a transplant? (A) two weeks, (B) one week, or (C) two to four days.

Answer: (A) might have been true in the days, more than a decade ago, when doctors usually had to remove a few of the donor’s ribs to take out a kidney. (B) is closer to current practice, but (C) is the answer. With the overwhelming majority (100 percent at some centers) of living donor kidney surgeries now being done laparoscopically (think: bikini incision ), most donors can go home with a moderate painkiller after a few days.

Obviously, it’s not a walk in the park – and certainly there are risks to any major surgery – but I was expecting something far worse. As a lifelong wimp who has passed out during an eye exam, after a flu shot and in anticipation of a blood test that didn’t even happen, I figure that if I can do it, anyone who’s healthy enough certainly can.

When friends visited soon after I came home from the hospital, I shocked them by answering the doorbell in street clothes. They couldn’t believe how well I looked (true, I got a new hairdo shortly before the surgery, but I don’t think that’s what they meant ) and acted. Hearing that repeatedly prompted me to confide in a friend, only half-jokingly, that I felt so good, I had to wonder if the surgeon had done it right.

Question: How soon can a kidney donor go back to work? (A) three months, (B) two months or (C) two to four weeks.

Answer: (C) Unless the job requires heavy lifting or much physical exertion, most people go back to work in a few weeks.

To be a kidney donor, you don’t have to be under 30. It depends on the health of the kidney. I was 58 when I donated my kidney to my son.

Research has shown that acts of kindness and charitable giving light up pleasure circuits in the giver’s brain. Can you imagine the light display when you’ve literally given a part of yourself?

I can.

Read more here: http://www.newsobserver.com/2014/12/05/4379561/consider-giving-a-part-of-yourself.html?sp=/99/108/#storylink=cpy



From Highlands Today, Tampa, Florida, BY ANN MARIE O’PHELAN















In 1981, Charles Smith was given new kidneys and he was also given a new life. Smith’s hereditary disease, polycystic kidney disease, made his kidneys unable to function well.

Back in 1969, when dialysis and transplants were not as common, Smith’s own mother died from the same disease when she was only 46 years old. Although Smith spent nearly a month in the hospital after his transplant, these days the recovery is much faster and most often has positive results.

There are approximately 100,000 people waiting for an organ donation on any given day. And one organ donor can save up to eight lives.

While it’s clear that organs are needed and one donation can do a lot, many of us delay our decision to become an organ donor. However, the decision to donate organs becomes much easier if you focus on how many of your organs, or those of your loved ones, can help someone else.

For Pam Cooper, a Sebring resident, it was her daughter Kaytlyn’s organs that helped save many lives. On Oct. 1, a passing car struck 16-year-old Kaytlyn as she walked along a road with her boyfriend and another friend. Although she was brain dead on impact, her body was still viable, and she was still breathing.

Organ donation was a decision that Kaytlyn actually made herself. Kaytlyn registered as a donor when she filled out the paperwork for her driver’s license, an action that was later verified by the hospital.

“I remember her talking about why she chose to be a donor,” Cooper said, who added that Kaytlyn wanted other people to live should she pass on.

Knowing that organ donation was part of her daughter’s wishes, the decision was relatively easy under extremely painful circumstances.

“Her heart was given to a 9-year-old child,” Cooper said. She later received a letter later stating to whom Kaytlyn’s donated organs were given — all went to Florida residents.

❖ ❖ ❖

The process of organ donation often begins when the giver first registers as a donor when they apply for a driver’s license, as in the case with Kaytlyn, or on a state’s donor website, such as Donate Life Florida.

Every hospital is required by federal law to have a relationship with its local organ recovery organization. In Florida, that organization is LifeLink of Florida, a nonprofit organization responsible for organ recovery in west Florida. There are four such organizations in Florida, and together they facilitate organ donation throughout the state. The organizations work collaboratively to educate the public about donation and oversee the state’s organ, tissue and eye donor registry, Donate Life Florida. The national waiting list is managed by an organization called the United Network For Organ Sharing (UNOS.org). [Read more]



From WSB, Atlanta, Georgia, by Hope Jensen

Georgia officer who received kidney to appear on Dr. OZ


Greensboro, GA.  The Georgia police officer who received a new kidney is back on the job just eight weeks after his transplant.

Greensboro police detective Raleigh Callaway was in stage 5 kidney failure when a photo of his daughters’ went viral on social media. The photos, taken by Brandy Angel, showed Braleigh and Delaini Callaway holding a sign that read, “Our Daddy Needs a Kidney.” When we posted the photos on the WSB-TV Facebook page, they were shared more than 45,000 times.

Just weeks later, a man in Texas saw Callaway’s story andstepped forward to donate his kidney.

"When I saw Raleigh's story, saw pictures of the girls and everything, and it hit me," said Carroll. "That's what kind of surprised me a little bit, there was never a doubt. I mean, it's like if my own dad needed a kidney -- that's how strongly I felt."

At the time, Chris Carroll was a complete stranger. But in the months since they first met, Callaway and Carroll have become more like brothers.

"Raleigh's my brother now, and I consider them part of my family now," said Carroll.

Callaway spent weeks recovering from the transplant, which took place in September. He is now doing well and back at work, making the most of his new lease on life.

“Him being able to go back to work is what really set the tone for our new life,” said Callaway’s wife Kristi. “Everyone was so excited to see him.”

During the process, Kristi created a Facebook page to keep family and friends updated on his progress. But as thousands of people liked the page, Kristi realized she could do a lot more and use the page to help others in need of a kidney.

“Everyone that’s been involved, we have all agreed that we want to spend the rest of our life using every opportunity we have to raise awareness and encourage someone to research living donors,” she said.

Kristi and Brandy Angel decided to form the organization Callaway’s Angels. Each week the group showcases the story of a person in need of a kidney transplant.

“I feel blessed and just want to help advocate for other people to help themselves,” said Kristi. “There are so many people in need.”

They started with a 56-year-old named Bret Reiff. They’ve since shared stories of mothers, fathers, grandmothers, teachers and many more. Kristi says she’s been amazed by the continued response by the community. [Read more]




From Stuff, New Zealand, by Julie Kaio


PRECIOUS: Jacqui and Colin Church, healthy and on the road to recovery after Jacqui gifted one of her healthy kidneys to Colin.

PRECIOUS: Jacqui and Colin Church, healthy and on the road to recovery after Jacqui gifted one of her healthy kidneys to Colin.

Port Waikato identity and Waikato District councillor Jacqui Church has bestowed the most precious and priceless of gifts - hope of a healthy life - on her husband of 22 years, Colin.

Jacqui has donated one of her healthy kidneys to replace Colin's dying organs - and given him a second chance at life.

"I've won the lottery over and over again, and we've now got a lot more living to do together, and as a family," Colin, 55, said.

The transplant has been an extremely personal journey for the couple, and their two adult children, who until now, have kept it private. They are sharing their experiences with the hope that they may educate others on the complexities of organ donations.

"We have been through so much, so now we just want to be able to help those who may be going through something similar," Jacqui said.'

Her kidney was successfully transplanted late September, but their quest to getting Colin well began many years earlier.

Colin suffers from a hereditary kidney disease. He was diagnosed with polycystic kidney disease (PKD) in his late 20s - since then it's been a waiting game to see when his organs would eventually fail.

That started around three years ago - his health steadily slipping as the months progressed. The couple knew then that a transplant would be needed within the next five years.

"I was getting more and more tired, lethargic. It's a gradual thing, but once you start getting older, you do notice it more," Colin said.

Medical monitoring was stepped up and when Colin's kidneys fell below the percentage failure threshold, they started to consider transplant options. Dialysis was only going to be a last resort and waiting on the public donor list offered no guarantees - so their ideal scenario was to find a live and matching donor.

Offering one of her kidneys to help her husband was a "no brainer" for Jacqui.

But accepting Jacqui's help was initially hard for Colin. [Read more]





From This Island Now, Great Neck, New York, BY BRYAN AHRENS

Transplant makes for special Thanksgiving

Transplant makes for special Thanksgiving


Christian Ohlsen said the first thing he looked forward to after receiving his new kidney was eating Thanksgiving dinner.

“I’m looking forward to eating creamed onions and stuffed shells again,” said Ohslen, who had suffered a kidney disease since the age of 14

Ohlsen told his story on Wednesday at North Shore University Hospital in Manhasset as he, his husband Shaun Coride and his donor, Robert Joy, who is Coride’s uncle, dug into a pumpkin pie.

Joy donated what surgical director Ernesto Molmenti said was “one of the best kidneys he’s ever seen,” to Ohlsen, a Moriches resident, on Oct. 22 at the hospital in Manhasset after his kidney started to fail.

“I can’t even say how blessed we are that my uncle did something like that for us,” Coride said. “I wasn’t expecting him to do that.

During his time with the disease, Ohlsen said, he wasn’t able to eat foods high in phosphates, such as cheeses. He also wasn’t able to eat certain fruits and vegetables such as oranges, bananas and asparagus but said he was able to handle his eating limitations.

“I’m not a picky eater,” Ohlsen said.

Ohlsen said he is but one of many in his family who suffer from polycystic kidney disease, which is an inherited disorder in which clusters of cysts develop in the kidney.

“There are so many members of my family living with PKD,” Ohlsen said. “My father has already gone through a transplant because of PKD. Two of my aunts have this disease and one of my uncles has already passed away as a result.”

Ohlsen said he is the third generation of his family to suffer form the disorder. [Read more]





From MyFox Atlanta, Atlanta, Georgia, By Beth Galvin, FOX Medical Team Reporter


New federal guidelines on kidney allocation could impact many Georgians waiting for a deceased donor kidney. The rules, created by the non-profit United Network for Organ Sharing (UNOS), will go into effect Thursday, December 4th, 2014. The guidelines could benefit younger, healthier transplant candidates, and those who've spent years on kidney dialysis, like Eli Porter of Atlanta.

Dialysis is a huge part of Porter's life. Every Monday, Wednesday and Friday, the 28 year old spends three hours hooked up to a dialysis machine filtering waste from his blood. He says, "It is a way of life. It's tiresome some days."

Porter has been on the United Network for Organ Sharing's kidney waiting list for 2 years, on dialysis for 10 years. But, under the new kidney matching rules, he could move way up that list. He says, “I could get a kidney any day now, I could get one today."

Under the previous system, Emory kidney transplant surgeon Dr. Nicole Turgeon says a major factor for transplant candidates was waiting time: how long they'd been on the transplant waiting list. How long they'd been undergoing dialysis didn't really count. But that's changed. Dr. Turgeon says, "One of the major differences is that now you will be given credit for your dialysis time.

In addition to waiting time. So that will be added on to the time you've been on the waiting list."

Both adult and pediatric dialysis patients will be credited for their time on dialysis. So, that means if you began dialysis before you were listed, your wait time will be backdated to the day you began dialysis. That adjustment means Eli Porter will get credit not for 2 years, but for 10 years. Dr. Turgeon says the new guidelines could really help many longtime dialysis patients.

She says, "It is big news for them. I think it's really going to help them in terms of getting better access to the transplants. Getting a transplant sooner."

Under the new rules, every candidate will be assigned an individual score, known as an Estimated Post-Transplant Survival (EPTS) score.

It will be based on four factors: the candidate's age, time on dialysis, diabetes status, and whether he or she has undergone a prior organ transplant. [Read more]





Living With PKD

From Ahwatukee Foothill News, Phoenix, AZ, by Vy Armour

Ahwatukee author shares hope, healing after tragic loss in ‘Waiting for Heaven’


Holidays can be a difficult time for families who have recently lost loved ones. In “Waiting for Heaven,” an Ahwatukee resident, Heather Gillis, reaches out to parents everywhere who have lost a child and are struggling to find peace within the midst of their pain. As the book jacket says, “Life can sometimes lead us to unexpected places, only to leave us broken, desperate and hurting.” Gillis tells of her personal struggle when her baby son, Bowen, died 13 days after birth of a fatal kidney disease, autosomal recessive polycystic kidney disease (ARPKD).

Although Heather and her husband, Mac, had no history of kidney disease, they discovered after Bowen’s birth that they had the mutation on their chromosomes, making them both carriers of the disease. One in 20,000 babies is diagnosed with ARPKD and they had a 4-in-1 chance of having a child with it. Fortunately, their first two children, Brooklyn and Blake, were not affected. Unfortunately, they were totally unprepared for Bowen’s diagnosis, with healthy ultrasounds throughout the pregnancy. Gillis’ story would be an inspiration to other parents who search for a way to explain the death of a sibling, including a list of books to read to toddlers.

In addition to her encouraging personal story of faith, hope and renewal, there are many resources listed — books, blogs and websites. Gillis created www.bowenshope.com to help spread hope to other families with ARPKD. Adult onset of this kidney disease is termed PKD and affects 1 in 500 adults, typically diagnosed in the early 40s. Her book can be purchased through her website at $1.99 or Amazon (price varies) and proceeds go toward helping children on dialysis. [Read more]

Sunday, November 30, 2014

Transplant Policies Change, Life Goes on with PKD

Kidney Transplant Policies

From Cleveland.com, By Angela Townsend, The Plain Dealer


TBA - new kidney donation wait list rules to help people on dialysis


Changes to the way the national kidney transplant wait list is administered will take effect next week, a move that will benefit people who typically wait longer than others for a new kidney.

Michael Brown of Euclid, who has been on dialysis since he was 20, said he'll be ready for a transplant when the call finally comes.

"The average wait for someone in Ohio is something like five years," said Brown, 31. He's been on the transplant wait list for three years.

Still, he said, "You never know. You never really know what's going to come available when."

On Dec. 4, the United Network for Organ Sharing, which maintains the country's transplant database, will enact new kidney transplant policies.

One of the criteria for matching someone on the wait list for a donor kidney is the length of time they have been on the list. For people who began dialysis before being added to the list, the new policy now calculates the waiting time from the date dialysis started.

Children who need a kidney transplant will remain at the top of the list because they face growth and developmental issues the longer they have to wait.

Brown is among the nearly 102,000 people in the U.S. - including more than 2,500 in Ohio - currently on the kidney wait list. When he was 20, he started dialysis after his kidney function – which had begun to decline when he was around 12 years old – dropped to 10 percent of normal function.

But as physically and mentally draining that dialysis is - three times a week, four-and-a-half hours at a time - Brown didn't explore the option of a kidney transplant right away.

Part of the delay, he said, was being told by physicians at another hospital that he was too heavy for transplant surgery.

Brown also said he has never been comfortable asking a friend of relative to donate a kidney to him.

Fear was another factor in his not pursuing a transplant.

"I've never had surgery before," he said. "Someone's organ being taken out of their body and put in your body, that's a jarring situation."

Over the years, Brown has lost about 30 pounds from his 6-foot-1 frame. And after changing physicians for his kidney care, and hearing about the benefits of transplant surgery, he began to look at things differently.

Three years ago, the transplant team at University Hospitals Case Medical Center – which performs a couple of kidney transplants each week - placed Brown on the kidney wait list. His wait, doctors told him, would be at least five years.

With the policy changes, Brown's credited wait time will be recalculated from three years to 11 years.

It's impossible to pinpoint how the alterations to the kidney allocation system will impact the wait time for a specific person, said Dr. Mark Aeder, a member of UH's transplant team and vice chair of the committee that developed the new policy.

For a small number of people currently on the list, several years of waiting will be shaved off immediately, he said.

For the vast majority, where they live and what their blood type is will continue to be a factor in how long they will wait.

"There are some areas of the country where people wait for 10 years, while in other parts the wait is a year and a half," he said.  [Read more]



From Nephrology News

US policy that gives priority to prior organ donors who need a transplant is working

Prior organ donors who later need a kidney transplant experience brief waiting times and receive excellent quality kidneys, according to a study appearing in an upcoming issue of the Journal of the American Society of Nephrology (JASN). The findings indicate that a U.S. policy that gives priority to prior organ donors on the transplant waiting list is working, according to the researchers.

Live organ donors provide a remarkable gift to relieve another person of the burden of organ failure. While most live kidney donors enjoy excellent health after kidney donation, recent research has revealed that kidney donation is linked with an increased risk of developing kidney failure.

Because of the gift of kidney donation, prior live organ donors receive priority on the kidney transplant waiting list. Peter Reese, MD MSCE, from the University of Pennsylvania’s Perelman School of Medicine,, Vishnu Potluri, MD, MPH, from Lankenau Medical Center, and their colleagues looked to see whether the current national kidney allocation policy was succeeding in its goal of minimizing waiting time to transplant for people who had once donated an organ. The researchers analyzed prior organ donors and matched non-donors who were wait-listed during the years 1996 to 2010.

“The research reveals that, fortunately, these donors did not wait a long time for their kidney transplants and received high quality kidneys,” said. Reese.

Prior organ donors had much shorter waiting time to receive a kidney transplant, and they received better quality kidneys compared with similar people on the waiting list who had not donated an organ.

“This study shows that the policy is working: prior organ donors get rapid access to high quality organs. After transplant, their survival is excellent compared with similar people who were not organ donors,” said Reese. He noted, however, that most prior organ donors needed dialysis before they received their transplant. Ideally, these prior donors would have received kidney transplants before they ever needed dialysis. ]Read more]




Living With PKD

From WIS TV, Columbia, South Carolina, By Meaghan Norman

For those with kidney disease, life goes on

In many cases, kidney disease can be prevented.

It's based largely on lifestyle: watching your blood pressure and your weight. But for some, it's an inherited disease.

"The mindset I had then as a 20 year old - I was invincible," said Brian McDonald.

McDonald has polycystic kidney disease, which means cysts grow in his kidneys.

He was diagnosed almost 10 years ago.

"After I was diagnosed in 2005, that's when it really shook me and made me realize I need to do something," McDonald said.

It started with taking better care of his body.

"Getting my blood pressure under control, that was number 1,” McDonald said. “And from there because of the kidney issues I was having I changed my diet. Watch my salt intake."

Getting your health on track helps prolong the life of the kidneys. Doctors also recommended dialysis.

"I'm there Monday, Wednesdays and Fridays for four hours," McDonald said.

Dialysis replaces your kidney function, removing toxins and excess fluid from the body.

There are two main options: Hemo-dialysis is done in a clinic several days a week and Peritoneal-dialysis is done at home every day.

It's a matter of which fits best into your life.

"Whether you decide to come into a clinic for treatment or do peritoneal, it's a lifestyle change not just for the patient but for the family also,” McDonald said.

When a patient begins dialysis for the first time they are given a social worker to help guide them through the new process.

"Every patient that I've had, I've been able to help them to get whatever benefits they need and coach them through that process," said social worker Amanda Bonner.

A process that includes helping patients afford dialysis and learning how to maintain a normal life.

"The diagnosis itself is heartbreaking,” McDonald said. “But it's better to know than not know. So once you know and find out, you can make your adjustments and keep moving."

And life goes on.

Sometimes it's hard to see that through a diagnosis or any traumatic life event but Brian McDonald made a point to stress, making the best of your situation. In his case, his disease was inherited but for many others, chronic kidney disease develops because of poor health choices.





From Green Bay Press Gazette, Green Bay, Wisconsin, by Alyssa Bloechi, Kewaunee County Star News

Lonnie Kinjerski benefit scheduled Dec. 6

When Lonnie Kinjerski was born, he was diagnosed with polycystic kidney disease (PKD). His parents, Voni and Paul, were told they would only have six to eight weeks with their newborn.

37 years later, the Kinjerski family is still enjoying the life of their son, who grew up to start a family with his wife, Amanda. They brought two children, Ian and Libby, into this world and have created a life full of love and happiness.

“We have a lot to be thankful for,” Voni Kinjerski said. “But now Lonnie’s kidneys have stopped working, and he will have to have a transplant. He is determined to keep going.”

According to the Mayo Clinic, PKD is an inherited disorder that causes the growth of clusters of cysts within the kidneys. Cysts are noncancerous sacs containing fluid that can vary in size, but can grow, eventually causing kidney failure and potentially other health complications.

Lonnie has been on dialysis since early spring and was put on the transplant list.

“A miracle happened,” Voni said. “A family friend, Kenny Barnes, learned he was a perfect match for Lonnie, and he will be donating one of his kidneys to help Lonnie.”

Barnes is not related to Kinjerski, and his being a non-biological match is incredibly rare.

“He is selflessly doing this so that Lonnie can continue to care for his family,” Voni said. “We are so thankful for what he is doing.”

A benefit to help fund the surgeries will be held in Lonnie’s honor from 1 p.m. to midnight Dec. 6 at Heritage Farm south of Kewaunee. Food and drinks will be served beginning at 1 p.m., and musical acts Ham’r Tyme and the Antique Rock Show Band will perform throughout the event. Children’s activities will be available, and Santa Claus will make a special appearance. A silent auction, 50/50 raffle and bucket raffle will also take place. Private donations can be made at any Baylake Bank location.

“The fact that this is happening is humbling and overwhelming,” Voni said.

Lonnie and his family live in Kewaunee, and he works at Kewaunee Fabrication, which has been very accommodating with Lonnie’s condition, Voni said.

“He has a strong will and work ethic, and he does not want to be a burden, so the fact that he is so loved is overwhelming to our family,” Voni said.

Lonnie enjoys music, playing keyboard, hunting, fishing and laughing with his family and friends.

This is the second benefit Lonnie has had, the first being in early November.

“This is bringing a lot of hope and happiness to our family,” Voni said. “This new kidney is truly a Thanksgiving blessing.”

The surgery will take place at Madison University Hospital.

Sunday, November 23, 2014

HALT - PKD Clinical Trial Results

PKD Research

From MedicalXpress

Two drugs are no more effective than one to treat common kidney disease

Two drugs are no more effective than 1 to treat common kidney disease


Using two drugs was no more effective than a single drug in slowing disease progression in people with autosomal dominant polycystic kidney disease (ADPKD), according to two studies funded by the National Institutes of Health (NIH). One of the studies also showed that rigorous blood pressure treatment slowed growth of kidney cysts, a marker of ADPKD, but had little effect on kidney function compared to standard blood pressure treatment.

The results of the HALT-PKD Clinical Trials Network studies will be published online November 15 in two papers in the New England Journal of Medicine to coincide with presentation at the American Society of Nephrology annual meeting.

"Enlarged cysts in kidneys can lead to reduced kidney function and eventually kidney failure, where the only treatment is dialysis or transplantation," said study author Michael Flessner, M.D., Ph.D., a program director at the NIH's National Institute of Diabetes and Digestive and Kidney Diseases, which funded the trial. "The HALT-PKD findings show that people with polycystic kidney disease do not need to take both of the drugs studied to slow their rate of kidney cyst growth and decline in kidney function."

The HALT-PKD trial enrolled volunteers to test whether a combination of commonly used FDA-approved drugs, lisinopril and telmisartan, could shrink kidney cysts and therefore slow progression of ADPKD, a genetic disorder characterized by growth of fluid-filled cysts in the kidneys. Within the trial, one study examined 558 people with early-stage ADPKD and relatively healthy kidneys. The other study treated 486 people with more advanced disease and decreased kidney function. In each study, half of participants were randomly assigned to receive lisinopril and telmisartan, while the other half received lisinopril plus a placebo. In both studies, adding the second drug did not change kidney function or rate of increase in kidney cyst size.

In the study of people with early ADPKD and healthy kidneys, researchers also tested if decreasing blood pressure below usual targets would slow progression of ADPKD and preserve kidney function. High blood pressure is a common and damaging effect of ADPKD. Half the participants were assigned to a standard blood pressure group (between 120-130 over 70-80), and half to a lower blood pressure group (between 95-110 over 60-75) but still within the normal range.

Participants in the lower blood pressure group received more rigorous treatment, taking more medication to maintain a lower blood pressure. The lower blood pressuregroup had a 14 percent decrease in kidney cyst size compared to those in the standard blood pressure group. However, kidney function - measured by estimated glomerular filtration rate (eGFR) - was about the same as the standard group at the end of the trial, yielding no clinical benefit. About 15 percent more of the people in the lower blood pressure group experienced lightheadedness and dizziness.

"The HALT-PKD studies were well performed and the largest of their kind," said Robert Star, M.D., director of the Division of Kidney, Urologic, and Hematologic Diseases within NIDDK. "More research is needed to better understand how polycystic kidney disease destroys kidney function over time, and what combination of medications can most safely and effectively prevent or undo the damage caused by this devastating condition."




From The Times of India, by Manash Pratim Gohain


Scientists at IIT-Bombay have developed a special membrane that promises to reduce the cost of dialysis by 50%, cut down time taken for the process by half and be safer for the patient. It could also spur development of portable or wearable dialysers.

Dialysis is the process of artificially removing waste and excess water from the blood in people suffering from chronic kidney failure. Due to the high cost of the procedure, around 90% of those who develop kidney failure in India die within months because of lack of treatment, according to an AIIMS study.

That could change in the coming years, with researchers at IIT-B's chemical engineering department hoping that their product will be available in the next three years. The hollow-fiber membrane developed by them has completed laboratory tests and awaits pre-clinical trials.

An Indian patent has been procured for the product. An indigenous and low-cost pilot plant for production of these membranes has also been functioning for the last two years.





From PKD Foundation

Active Studies – Not Yet Recruiting

For drugs and therapies to be developed for PKD, clinical studies must be conducted. Patients play a key role in the research and development process by volunteering to participate in clinical studies. From observational studies to clinical trials, you can help researchers unlock the secrets of PKD and find a treatment by participating in a study.

Minnesota
New Quantitative MRI Parameters in Assessing Kidneys of ADPKD (MRI Pilot)

International
Clinical and Molecular Description of PKD1 and PKD2 Mutation Negative Carriers in ADPKD (GeneQuest)
The Efficacy of Everolimus in Reducing Total Native Kidney Volume in Polycystic Kidney Disease (PKD) Transplanted Recipients (EVERKYSTE)
Lanreotide in PKD Study (LIPS)

Not Listed
Open-label Trial to Evaluate the Long Term Safety of Titrated Immediate-release Tolvaptan in Subjects With ADPKD





Living With PKD

From Nephrology News, By Rebecca Zumoff

Frequent home dialysis provides survival advantage over in-center hemodialysis

Frequent home dialysis therapies may help prolong the lives of patients with kidney failure compared with hemodialysis treatments administered in medical centers, according to a study presented at ASN Kidney Week 2014.

Researchers led by Austin Stack, MD, MBBCh, FASN from the Graduate Entry Medical School, University of Limerick, in Ireland, analyzed national data to compare dialysis survival among 585,911 patients who started dialysis in the United States between 2005 and 2010.

Peritoneal dialysis and frequent home hemodialysis done at least six times a week offered the greatest patient survival compared to in-center hemodialysis, while home hemodialysis done only times three per week had the lowest survival rate, the authors concluded.

Among the major findings:
Patients who were treated with peritoneal dialysis were about 10% less likely to die during the study period than patients treated with standard 3-times per week in-center hemodialysis.
Patients receiving high frequency home hemodialysis delivered six times per week were 26% less likely to die during the study period than those receiving standard in-center hemodialysis.
Patients receiving less frequent home hemodialysis (four or five times per week) had mortality risks that were similar to those of patients receiving in-center hemodialysis.
Patients receiving home hemodialysis at a frequency of three times per week were 47% more likely to die than patients receiving in-center hemodialysis.

"We suggest that a treatment approach that adopts a peritoneal dialysis first or frequent home hemodialysis first strategy should be considered for all suitable patients who develop end stage kidney disease," said Dr. Stack. "Such an approach may offer superior survival, better quality of life, and be cost effective for national health care systems."

Study: "Survival Differences between Home Dialysis Therapies and In-center Haemodialysis: A National Cohort Study" (Abstract SA-PO957)

All the Kidney Week abstracts are available at https://www.asn-online.org/education/kidneyweek/archives.




From News-Medical.com

Majority of kidney dialysis patients not adequately prepared for emergency or natural disaster

But individualized education dramatically improves preparedness, Loyola study finds

Eighty percent of kidney dialysis patients surveyed were not adequately prepared in the event of an emergency or natural disaster that shut down their dialysis center.

But after receiving individualized education from a multidisciplinary team of doctors, nurses, dieticians and social workers, 78 percent of these patients had become adequately prepared, according to a Loyola University Medical Center study.

Anuradha Wadhwa, MD, and colleagues, reported findings during the ASN Kidney Week 2014 meeting.

Patients with kidney failure rely on dialysis treatments to survive. The treatments, typically three times a week for about four hours, remove wastes and extra fluids from the blood.

Researchers surveyed 124 patients at a Loyola outpatient dialysis center. During dialysis sessions, patients were asked whether they:

Believed they were prepared for an emergency.

Had an emergency plan they had discussed with a family member or dialysis unit.

Knew of a back-up dialysis facility.

Were familiar with an emergency diet that is key to survival in the event of a missed dialysis session. The diet includes limiting fluid intake and avoiding potassium-rich foods.


Patients who answered yes to all four questions were considered to be prepared. But while 60 percent of the patients thought they were prepared for an emergency, the survey found that only 20 percent were actually prepared. However, 95 percent of patients were interested in learning about preparedness. [Read more]