From WXYZ.com, ABC affiliate Detroit, MI, By: Smita Kalokhe
The Simon sisters each had 50 percent chance of having a life-threatening genetic disease. When three of the five women realized they had it, the other two sisters offered them the gift of life.
Kathie Wing, Beth Skorupski and Mary Simon were all diagnosed with polycystic kidney disease 25 years ago. Their two youngest sisters, Joan and Toni, didn't get the disease.
"This is a genetic disease that is passed down from parents," Dr. David Butcher, a transplant nephrologist at St. John Hospital, said. "(There is a) 50 percent chance of getting it."
"The minute I saw those cysts on the ultrasound, I knew. You could see them," remembered Kathie.
Kathie received a kidney from Joan 9 years ago.
The conditions for Beth and Mary both worsened. "We were kind of neck and neck as to who might need a kidney next," Mary told Action News.
Two years ago, Beth beat Mary to the need. She received the gift of life from Toni.
"I thought, 'Ok, I know I need this kidney now. Things are at a certain point, but what's Mary going to do?" remembered Beth.
The sisters banned together, writing letters to friends and relatives asking for a kidney donation for Mary.[Read more]
Rachel Duff, gave longtime friend Mandi Davis a kidney in November. It wasn't a direct donation, however, because Duff's kidney wasn't a match for Davis. Instead, they took part in a six-person transplant chain.
What's the best present your best friend ever gave you?
Few can match what Rachel Duff of Geneva gave Mandi Davis in November: A kidney. In a roundabout way.
Duff took a chance on giving a kidney to a stranger, trusting that a kidney transplant chain would work out and her friend would wake up from surgery with a new lease on life from somebody's else's kidney.
The story of the Nov. 21 operations at Northwestern Memorial Hospital in Chicago, in which Davis and two other people received new kidneys, started almost 20 years ago, when Duff and Davis, now 25, met at Harrison Street Elementary School in Geneva.
"Were we in Daisies (Scouts) together," Davis said.
Duff's mom was the troop leader. The girls and their mothers became friends, and even closer a few years later when the families ended up living on the same street. Davis recalled crashing her bicycle at Duff's house, and exploits such as eating cat food to see what it was like. "So we had a really funny friendship," she said.
Davis was being tested annually, as she had since her kindergarten physical, for kidney function. Doctors thought she had a benign condition, basement membrane glomerulonephritis. She took medication but didn't worry.
But then her lab work changed in 2010. A subsequent biopsy showed she had something else: Alport syndrome, a progressive genetic condition.
"So I'm a mutant," Davis said, laughing.
Nobody else in her family had the disorder or the genetic markers. She changed medication and knew that she might need a transplant one day.
"Maybe when I'm 50 or 60," she thought.
Davis left in August 2011 to study in Ecuador. But her condition worsened rapidly. Doctors told her she would need a transplant by age 35 at the latest, and that she should start arranging for one immediately, as it can take years to get a kidney from a deceased person.
By fall 2012, her condition was bad enough she had to start dialysis to remove toxins from her blood.
Transplant-wise, she ran into obstacles. Her only sibling, a brother, didn't share her blood type, and her parents weren't eligible. Lots of friends were tested but didn't match. Duff's mom matched but was deemed too old to give a kidney to the younger woman.
Duff was the only one to agree to a swap. [Read more]
From ECMPostReview.com, Minnesota, By Derrick Knutson
Former student donates kidney to retired NB teacher
Many people can think of a favorite teacher or two they had during their elementary through high school years.
Few can say they donated a kidney to that teacher, though.
Kevin Noyes, a 1985 graduate of North Branch Area High School, forged a special relationship with Marlin Ness, a high school mathematics teacher who taught for 34 years in the district before retiring in 1997, while Noyes was growing up in the Almelund area.
He knew Marlin Ness well before becoming his student as a high school freshman.
Noyes and Marlin Ness’ son, Eric Ness, have been good friends since third grade.
The Nesses have been like a second family to Noyes for about 30 years.
“We were at our farmhouse many nights with the kids,” Marlin Ness said, noting that Noyes’ home was about 3 miles from the Ness’ house.
PKD diagnosis
During a baseline physical examination in 2004, Marlin Ness’ physician noticed something concerning: One of his kidneys was larger than it should have been.
“They couldn’t quite figure it out,” he said. “They just watched me for years, and then they finally said (in 2011), ‘You have polycystic kidney disease.’”
PKD is a disorder in which clusters of cysts develop primarily within a person’s kidneys. Cysts are noncancerous round sacs containing water-like fluid.
Over time, the disease diminishes the kidneys’ ability to filter waste out of person’s bloodstream, and some of those afflicted with the disorder experience complete kidney failure and have to go on dialysis.
PKD affects thousands of people in the United States and millions worldwide, according to the PKD Foundation.
Anne Petersen, a donor family liaison with American Donor Services, citing information from the American Kidney Fund, said about 18 people a day on donor lists die while waiting for organ transplants, and many of those are waiting for kidneys.
Like many patients waiting for kidneys, Ness eventually had to go on dialysis, but by that point, he knew he’d be receiving a kidney from Noyes.
However, he didn’t know initially that Noyes wanted to give his kidney to him.
Without Ness knowing it, Noyes went to be tested and found out he was a match. [ Read more]
From Mirror, United Kingdom, by Steve White
Helen Cavanagh, 52, is giving the ultimate Christmas gift to workmate and friend Julie Rogers
Selfless banker Helen Cavanagh is giving a workmate the ultimate Christmas present – one of her kidneys.
The 51-year-old Royal Bank of Scotland project manager goes into hospital with Julie Rogers, 45, today for the eight-hour op.
Julie, who had her kidneys removed in 2011, said: “It’s the gift of life. I couldn’t believe it, when Helen considered it.
“I was gobsmacked.”
Mum-of-two Julie, from Hindley, Lancs, has polycystic kidney disease – which killed her grandfather and two aunts.
Her mother, sister and daughters also have the hereditary condition so no family member could donate.
Julie’s kidneys grew so large that people thought she was pregnant and she has needed three five-hour dialysis sessions a week to keep her alive.
She said: “People last around five years on dialysis, I’m on my third.” [Read more]
Prevailing on Dialysis
From Stornoway Gazette, United Kingdom
Renal patient forced to leave island
A Benbecula father will not be spending Christmas with his family this year due to a lack of access to lifesaving dialysis on the island.
Iain Macmillan (37) has a severe form of kidney disease which means he needs to have haemodialysis in hospital three times a week and cannot go without it for more than two days.
The service is not available at the Uist and Barra Hospital and trips home are complicated and expensive as he must also include detours to Stornoway to receive dialysis at Western Isles Hospital.
He now lives on the mainland because living at home is not an option, particularly as further cuts to travel links mean there are only flights to Stornoway three days a week which do not coincide with the three Renal Unit days.
Iain, however, longs to return to his home island where his family, including his 16 year old son live.
“It is shockingly difficult for me to get home,” he said. “The dialysis unit in Stornoway only offers dialysis on Mondays, Wednesday and Fridays but there are no flights to Stornoway from Benbecula on Mondays or Fridays, so I would be at the mercy of the ferries in order to get there. This isn’t always an option particularly in winter.”
He added: “The other option would have been to have dialysis in Inverness – but again the lack of flights mean that I wouldn’t be able to get home on a weekend after a dialysis session.
From Des Moines Register, Iowa, by Kyle Munson
Shortly after John “Jack” Reynolds’ kidneys were crushed, so were his hopes.
He was just 4 years old in June 1956 when a farm accident nearly killed him: A 100-gallon barrel of water tumbled off a trailer, steamrolled over him and squashed his abdomen.
During Reynolds’ two months in the children’s hospital in Des Moines, singing cowboy and movie icon Roy Rogers happened to pay a visit.
The farm boy from rural Carlisle was wheeled into the playroom, still tethered to medical gear, yet eager to meet his childhood hero. But he got lost among the roomful of cute, sick kids.
Rogers “walked right by me, and he didn’t hardly look at me,” Reynolds said.
Reynolds, now 61, has survived on dialysis for 39 years — longer than anybody else in Iowa and probably many other states and countries.
Last year, he won his first paid, speaking acting role in Alexander Payne’s “Nebraska.” So bittersweet, belated recognition from Hollywood arrived, thanks to his unlikely showcase in a film that has become a top Oscar contender. [Read more]
From ANewsCafe.com, Redding, CA, by Candace Brown
Jody Cushman is battling tough odds. You’d never know it talking to her—she’s positive, matter-of-fact, warm and friendly. She makes the best of a limited lifestyle, devoting her time to family and friends.
For instance, she’s almost done with a remodeling project that will turn her spare bedroom into a walk-in closet. Not for her—for her friends.
“I miss out so much on girls’ nights, going out to dinner and on the town,” she said. “I want to entice my girls to get ready at my home.”
Cushman, 41, must hook herself up to a dialysis machine every night at 7 for 12 hours. The treatments keep her alive while she waits and hopes for a kidney match from a donor.
Diagnosed with diabetes at age 4, Redding resident Cushman said disease complications and an overuse of ibuprofen—which can damage kidneys—led to her first kidney failure and transplant at age 19. That kidney lasted 10 years before it, too, failed, forcing her back into dialysis for the past nine years.
“I need to say this,” she said. “This was brought on from diabetes and the fact that I wasn’t aware as much as I should have been. It wasn’t drug-induced. It wasn’t alcohol-induced. I’m not a smoker.” [Read more]
BALTIMORE -- Tracey Mooney is not looking forward to 2016.
As chief financial officer for an organization that operates dialysis centers across Maryland, she expects to have some tough decisions to make about two years from now, when her industry could face crippling reductions in Medicare payments.
There are about 115 dialysis centers across Maryland, but that number is in danger of dropping. The reason? A looming 9.4 percent reduction in Medicare reimbursement rates that providers and advocates worry will force some centers to close their doors, lay off workers or sacrifice quality of care. That would reduce the average per-patient payment from about $230 to $200.
The lower rates will likely take effect in 2016, unless the federal Centers for Medicare and Medicaid Services decides payments need to be increased. Providers say they're not optimistic.
Still, clinic operators like Mooney, who works for Independent Dialysis Foundation Inc., have braced themselves for worse.
CMS' original proposal, in July, called for the 9.4 percent cut in 2014. It was only in November, after intense resistance from the industry, that it announced rates would stay the same through 2015 and that the agency would re-evaluate payment levels in 2016.
The delay is a welcome reprieve, but spreading the cuts over several years will not make them any less painful; it will simply delay the consequences, providers and advocates said.
"At the end of the day, the phase-in is a blessing, but we're fearful of 2016," Mooney said.
Centers with higher percentages of Medicare patients will be the most likely to close their doors soon after the cut takes effect, said LeAnne Zumwalt, group vice president of Denver-based DaVita HealthCare Partners Inc., the second largest U.S. operator of dialysis centers, including the Downtown Dialysis Center in Baltimore. [Read more]
As chief financial officer for an organization that operates dialysis centers across Maryland, she expects to have some tough decisions to make about two years from now, when her industry could face crippling reductions in Medicare payments.
There are about 115 dialysis centers across Maryland, but that number is in danger of dropping. The reason? A looming 9.4 percent reduction in Medicare reimbursement rates that providers and advocates worry will force some centers to close their doors, lay off workers or sacrifice quality of care. That would reduce the average per-patient payment from about $230 to $200.
The lower rates will likely take effect in 2016, unless the federal Centers for Medicare and Medicaid Services decides payments need to be increased. Providers say they're not optimistic.
Still, clinic operators like Mooney, who works for Independent Dialysis Foundation Inc., have braced themselves for worse.
CMS' original proposal, in July, called for the 9.4 percent cut in 2014. It was only in November, after intense resistance from the industry, that it announced rates would stay the same through 2015 and that the agency would re-evaluate payment levels in 2016.
The delay is a welcome reprieve, but spreading the cuts over several years will not make them any less painful; it will simply delay the consequences, providers and advocates said.
"At the end of the day, the phase-in is a blessing, but we're fearful of 2016," Mooney said.
Centers with higher percentages of Medicare patients will be the most likely to close their doors soon after the cut takes effect, said LeAnne Zumwalt, group vice president of Denver-based DaVita HealthCare Partners Inc., the second largest U.S. operator of dialysis centers, including the Downtown Dialysis Center in Baltimore. [Read more]
