From Philly.com, By Paul Jablow, For The Inquirer
It was fall 1993, and Henri Gutner's kidneys were continuing to fail. He was always tired, his complexion was green, and he was sleeping as much as 20 hours a day.
"I had him maybe six hours a day when he was capable of doing anything," recalls his wife, Jeri.
With his kidney function down to 8 percent, Gutner, then 43, was told he was facing dialysis and the inevitable disruption it would bring to his - and his wife's - life.
"I said, 'There's no way I'm sending my young husband to dialysis,' " said Jeri Gutner, who is five years younger. "There has to be some way." There was. She donated a kidney to him. The operation at the Hospital of the University of Pennsylvania (HUP) was just the 21st kidney transplant performed there between persons not related by blood. "He came out looking like my husband," she said. The couple now travel, lead a normal life, and head the Keller Williams real estate office in Doylestown.
Since 1987, HUP surgeons have performed more than 150 spousal kidney transplants. Ali Naji, who heads the hospital's kidney transplant program and has performed many of them, says that "the love and affection between the spouses adds tremendous positive gratification." Spousal kidney transplants have been done at the rate of roughly 700 a year since the national Organ Procurement and Transplantation Network began keeping statistics in 2002.
"A lot of spouses see it as not just doing something for the other person, but as doing something for the relationship," says Carolyn Cristofalo, who works with donors at HUP. "And of course it might eventually lighten the burden on the caregiver. People want to move on with their lives together."
While blood relatives may often be the most compatible match, says Naji - who did not operate on the Gutners - advances in immunosuppression drugs have dramatically increased success rates for transplants between unrelated persons. [Read more]
From Courier-Journal, Louisville, KY, by Laura Unger (Note: story first published in February 2010)
Two years ago, doctors gave Robert Waddell a choice — a kidney transplant or years of dialysis.
The 43-year-old Louisville father of four, whose kidneys were enlarged from polycystic kidney disease, chose the transplant. But he feared the possible side effects of a lifetime of anti-rejection drugs, including infection and cancer.
So he joined an experimental study that would allow him to taper off and eventually stop using those drugs.
The study, a collaboration between the University of Louisville and Northwestern University in Chicago, uses specially processed stem cells from a donor to help establish a "twin" immune system in the recipient that lets the body recognize a donated organ as its own.
Dr. Joseph Leventhal, director of the living donor renal transplant program at Northwestern, is working with U of L's Dr. Suzanne Ildstad on the study. They treated their first patient last year and ultimately hope to recruit up to 30 kidney transplant recipients.
"The results are very promising," Leventhal said. If they hold up, "it looks like this would be a safe, better approach for the large majority of people. ... It would radically transform transplants by eliminating the need for immunosuppressive drugs." [Read more]
From The Courier of Montgomery County, Conroe Texas News, by Kimberly Sutton
Halle Ludwig needs a kidney transplant. At age 11, this will be her second donated kidney.
Ludwig, a fifth-grader at Mitchell Intermediate, was born with autosomal recessive polycystic kidney disease. She has had more than 30 surgeries and received her mother’s kidney when she was about 3 years old, according to her mother, Christine Clinkenbeard, of The Woodlands.
“She has thrived during the past eight years and is a precocious and loving (child),” Clinkenbeard said in a letter written to the community for support. “And with your support, we can continue to see her grow into a generous, kind girl who wants to grow up to be a doctor in a children’s hospital.”
With her kidney now failing, Ludwig recently was recommended by Texas Children’s Hospital for another transplant, and testing for donors must begin immediately.
“She’s at 16 percent,” said Debbie Jaeger, a family friend. “We can use all help we can get to get her message out.” [Read more]
When Rosemarie Meuse retired to New Hampshire with her husband Philip this past January, she was ready to begin a new chapter of her life.
But by October, Philip had died suddenly of cardiac arrest and Rosemarie, who suffers from Polycystic Kidney Disease (PKD), had been told by her doctors that she could only survive for less than a year with her kidneys functioning the way that they were. Her husband, who was scheduled to be tested for compatibility, could no longer serve as a living kidney donor, leaving Meuse to spread the word of her need and depend on the kindness of others...
In order to continue functioning and not begin receiving dialysis treatments, Meuse must receive a kidney donation. Her two brothers each have one kidney. When one needed a donation for his own PKD, the other and only sibling without the disease became a donor. Meuse is on the waiting list for a kidney—her doctors at Brigham and Women’s Hospital in Boston have approved her as a transplant recipient—but the average wait is up to seven years. She added that a dialysis patient can only survive for five years. [Read more]
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Raising PKD Awareness
From Fox4KC.com, Kansas City
‘Cocktails for a Cure’ to benefit National PKD Foundation
Polycystic Kidney Disease is an incurable disease. But now,
30 years after the National PKD Foundation began in Kansas City, the foundation continues to raise awareness and funds for research and treatment.
Angela Connelly with the PKD Foundation and Jill Reister, a PKD patient, were guests on Tuesday’s FOX 4 Morning Show to talk about the work of the foundation and how they’re giving hope to PKD patients across the country.
If you would like to help in the fight against PKD, the foundation is hosting a Cocktails for a Cure event this Saturday, Nov. 2 at the Belvoir Winery in Liberty, Mo.
For more information, just go to the foundation’s website.
From Tuscaloosa News, Alabama, by Danielle Walker
Not many people get the opportunity to run in the New York City Marathon, the world’s largest marathon.
“How many people can say they ran the NYC Marathon?” Tyler Ujhazy said.
Ujhazy, a University of Alabama graduate and Buhl native, got the chance of a lifetime when he was offered an entry to run in this year’s New York City Marathon, which is Sunday.
Ujhazy was offered a guaranteed entry into the race earlier this year from the Polycystic Kidney Disease Foundation. A few months earlier, Ujhazy found out his mother had been diagnosed with PKD. That was when he joined the foundation to learn more information about the disease and find ways that he could help his mom and others living with PKD.
“It wasn’t easy. You know, your mom telling you that she’s diagnosed with something,” Ujhazy said. “She wasn’t too sure exactly what it was, I wasn’t too sure. I was just kind of filled with emotion. Definitely not an easy moment.”
There is currently no cure or treatment for PKD except for kidney transplant or dialysis. PKD affects the kidneys and creates cysts on the organs. The kidneys can swell to the size of footballs. Ujhazy hopes through running, he can raise awareness about the disease so one day there will be more treatment options for those affected by the disease.
“I just want to raise awareness because before Mom called me to tell me she was diagnosed with it, I really had no clue what PKD was,” Ujhazy said.
From South Wales Argus, United Kingdom
THE PARENTS of a Risca baby who died just three days after his birth are campaigning to raise awareness of kidney disease in newborns.
Stacey and Ryan Jones, whose son Logan, died from polycystic kidney disease, have now received £2,700 towards charity polycystic kidney disease (PKD).
Born on October 31 2012, at the Heath hospital in Cardiff, Logan died on November 2 after his kidneys enlarged and cysts grew on them- resulting in his lungs not functioning properly.
The disease typically causes lung failure and other organs of the body not to work effectively. [Read more]
From NewsWise.com
Highlights
• Six leaders in the kidney health community are being honored by the American Society of Nephrology (ASN), the world’s largest organization of kidney disease specialists.
• The award winners will be honored at ASN Kidney Week, the world’s premier nephrology meeting. More than 13,000 kidney health professionals from around the world will gather in Atlanta on November 5–10.
More than 20 million Americans have kidney disease. [Read more]
PKD Treatments
From The Sacramento Bee, CA
3SBio to Develop DJ5 for Progressive Renal Failure in ADPKD Patients
3SBio Inc., a leading China-based biotechnology company focused on researching, developing, manufacturing and marketing biopharmaceutical products, today announced the acquisition of patents for DJ5, a novel non-TZD PPARgamma agonist with potential to retard progressive renal failure in patients with autosomal dominant polycystic kidney disease ("ADPKD'). 3SBio intends to seek approval from the CFDA to undertake phase one clinical trials in China.
ADPKD is the most frequent hereditary renal disease which affects about 1 in 400 to 1 in 1,000 people. The estimated patient population is approximately 1.5 million in China and 10 million globally. Approximately 50% of people with ADPKD will develop end stage kidney disease and require dialysis or kidney transplantation.
Researchers with the Shanghai Institute of Materia Medica, Chinese Academy of Science discovered and synthesized DJ5 and investigated its effect on disease progression and possible side effects in the Han:SPRD rat model of polycystic kidney disease. They concluded that DJ5 markedly delays the loss of renal function, inhibits the cyst epithelial cell proliferation, and retards cyst development in Han:SPRD rats with ADPKD, without causing cardiac side effects.
Previous studies have shown that PPARgamma agonist Thioglitazones (TZDs) could reduce renal cystogenesis, retard the progression of kidney failure and prolong survival in ADPKD animal models. However, TZDs treatment was associated with fluid retention and heart failure. [Read more]
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