Sunday, August 6, 2017

PKD Chain of Life, Donor Kidneys Rejected, DonateLife Week, PKD Creates Giant Liver

Gift of Life

From US News & World Report, By Dennis Thompson


A donated kidney is turned away for transplant an average of seven times before reaching the patient who finally receives it, a new study shows.

Transplant centers regularly reject kidneys based on a donor's age or perceived quality of the organ, even though these kidneys are eventually accepted and work well for people farther down the waiting list, explained lead researcher Dr. Anne Huml, a nephrologist and health disparities fellow with Case Western Reserve University in Cleveland.

The centers are likely being appropriately picky in selecting organs, to ensure the greatest chance of success by carefully matching each kidney to each recipient, Huml said.

"If someone's been waiting five years, why rush and take the first kidney offered when within a month they'll be offered a better kidney and their outcome will be better?" Huml said.

But such hesitation can mean that patients high on the waiting list remain on dialysis while organs that would have suited them fine pass down to others who've waited less time, said Dr. Sumit Mohan, an associate professor for medicine and epidemiology at Columbia University's Mailman School of Public Health.

"The general sense is that surgeons are less willing to take risks, so what ends up happening is there are a large number of kidneys that people say no to that end up getting transplanted way down the list," said Mohan, who co-authored an editorial accompanying the study. Both appear in the July 27 issue of the Clinical Journal of the American Society of Nephrology.

Worse, patients rarely are told that their transplant center has passed on a donor kidney offered to them, Mohan said.

"If your surgeon says no, I don't want that kidney, you're never informed. You're not even told that's the case," Mohan said. "Patients need to be more engaged in the process and have a better understanding of what's being agreed to on their behalf."

More than 100,000 people currently are waiting for a kidney transplant in the United States, Mohan said.

Despite this, nearly 1 in 5 deceased donor kidneys are discarded annually. Nearly 15 percent of organs are tossed away because no recipient can be located, Mohan said.

Dialysis keeps a delay in receiving a kidney from becoming immediately life-threatening, Huml said. However, there is a high mortality rate associated with dialysis, and people who are on dialysis longer don't do as well once they have received a kidney, Mohan said.

For the study, Huml and her colleagues reviewed more than 7 million organ offers that were made for 31,230 kidneys from deceased donors between 2007 and 2012. All the kidneys were eventually transplanted.

The researchers found that donor kidneys were offered a median of seven times to different patients before being accepted for transplantation.

Centers most often gave a pass to a donated kidney either based on donor-related factors such as age of the person or quality of the organ, or because the minimal acceptable criteria for a transplant center had not been met. Each of those two general reasons accounted for 3.2 million rejected offers, or around 45 percent.

Transplant centers largely pass on kidneys from donors with high blood pressure, a history of diabetes, reduced kidney function or death related to heart problems, the researchers found.

In those cases, centers that want to keep their success rates high are rejecting organs that appear dicey, even though they end up being successfully transplanted into another patient, Mohan said.

The study also found that transplant centers are more picky in choosing kidneys for patients who are male, Hispanic, overweight or obese, or suffering from high blood pressure resulting from kidney failure, Huml said.

Patients with medical problems such as excess weight or high blood pressure likely face more difficult surgeries, and so doctors are more choosy about the kidney that's right for them, Mohan explained. [Read more]




From Hartford Courant, CT

Yale-New Haven Hospital Puts Connections On Display In 18-Patient, 9-Kidney Exchange

Yale Kidney Chain

As Janet Labati, a small, thin woman from Newtown, sat next to her kidney donor Laura Miller, of Old Lyme, the two women whispered and laughed like old friends. However, it was the first time they had ever met.

"She's my angel," Labati said as she rested her hand on Miller's arm. "I'm so grateful just to be able to walk around and feel good again."

Emotions ran high on Thursday at the Yale-New Haven Hospital when nine kidney transplant patients met their donors for the first time. All had been strangers, but they are forever linked in an 18-patient, nine-kidney exchange; the largest exchange ever performed in Connecticut.

When a previous transplant failed, Labati said she thought she was out of options.

"Kidney disease had taken a toll on my body," she said. "I contacted the hospice to discuss end of life care, I never dreamed I would have a third chance."

But her husband, Jim Labati, wouldn't give up on her. He said he donated one of his kidneys through Yale's kidney exchange program in the hopes that his wife would receive a kidney and no longer require the use of a dialysis machine to filter toxins from her bloodstream.

"Being on dialysis is surviving but it's not living," he said. "I donated a kidney so Janet could receive a kidney."

Miller said she had originally wanted to donate to her friend Randy Smith of Old Lyme.

"I feel rewarded and pleased that I saved a life," Miller said. "How many people can say that at the end of the day?"

The mastermind behind the exchange was Dr. Peter Yoo, director of Yale's program in paired organ exchange. He said it started with one altruistic donor, Robin Gilmartin, of West Hartford. Gilmartin and her wife, Diane Mack, both said they decided to donate their kidneys after reading an article in the Hartford Courant about a four-way kidney exchange performed at the hospital. Her only motive was to help others, she said.

"Donating a kidney is an extremely low-risk surgery. It doesn't change your functioning in the least," Gilmartin said. "For relatively little inconvenience, it's a tremendous reward."

Little did Gilmartin know that her decision to donate would set off a chain reaction in which Yoo was able to match 18-patients together. [Read more]




From Bendigo Advertiser, Australia, by Mark Kearney

Bendigo kidney recipients use DonateLife Week to describe how organ donation changed their lives


On meeting Maree Derby, it is impossible to tell that just five weeks ago she was the recipient of a kidney transplant.

Her mood is upbeat, her eyes are bright and 18 months of dialysis at Bendigo Health already feels like a distant memory.

“Sometimes I’ve got to remind myself to slow down, that I’ve had a major operation,” Ms Derby, who suffered from polycystic kidney disease, said.

Speaking during DonateLife Week, an annual initiative encouraging organ and tissue donation, the 52-year-old explained how gifted organs transformed her family’s life.

Not only was Ms Derby an organ recipient, her mother, Gwen, also underwent a kidney transplant for polycystic kidney disease.

Her 25-year-old daughter has also been diagnosed with the hereditary condition.

“It does follow you around a little bit, but you have to get on with it,” she said when asked how it felt knowing this was a process she would eventually endure.

“I also think it gives you time to accept it.”

Peter Van Schajik, another Bendigo kidney recipient, did not have so long to prepare; he was struck down last year with an aggressive case of IgA nephropathy, a build-up of antibodies in the kidneys.

Eight weeks ago, a transplant operation freed him from four days of dialysis every week. It also put to an end a horror three-year period during which time a workplace accident left Mr Van Schajik with burns to 35 per cent of his body.




Living with PKD

The Sydney Morning Herald, Australia, by Rachel Clun

Woman donates 12 kilogram liver to university learning museum

Fiona Murray with her donated liver.



Fiona Murray's liver was large. So large people would often ask her when her baby was due.

A healthy human liver weighs about 1.5 kilograms, but Ms Murray's weighed a massive 12.08 kilograms when it was removed.

"When I actually had the operation I said, 'can somebody take a photo of it for me' but they took one step forward and said,'well actually, the fellow in pathology said could we actually have it for the museum'," she said.

And after receiving a donor liver and kidney herself, Ms Murray said she jumped at the chance to donate her own to science.

"I just said, 'yeah that would be great, I don't mind, I don't need it'."

The Brisbane woman's liver was donated to the University of Queensland's Integrated Pathology Learning centre, where she said students can now use it as a learning tool.

"If someone's donating to me, for me to live and do all the things that I love to do so if someone would like to learn from my donation, then that was pretty much just giving the gift of knowledge," she said during DonateLife Week.

Ms Murray, now 47, was diagnosed with polycystic kidney disease when she was 25 years old. When she was in her 30s the disease spread to her liver, which continued to grow.

"(It was) rather uncomfortable, it's pretty much like being pregnant for years and years," she said.

Strangers would often ask her when she was due, but rather than get annoyed Ms Murray said she would use it as a way of bringing up the topic of organ donation.

"I didn't get sick of that totally; sometimes it was just more of an avenue to tell people, 'oh no that's not a baby bump, it's actually polycystic liver due to polycystic kidneys and I need a donation of a liver and kidney."

While Ms Murray said she didn't feel particularly unwell, she realized her condition was serious when dialysis failed to improve her health.

"It was making it worse: I lost a lot of weight, I was cramping up on the chair, my liver was so big it was encroaching and sitting and suffocating all the other organs when I was sitting on the dialysis chair," she said.

She was on the transplant list for just a couple of weeks before receiving a donor kidney and liver in early 2014.

As well as being able to now bend down and do up her own shoelaces, Ms Murray said she had been enjoying the freedom the transplant had given her.

"Life now is my own journey, I don't have to think about having to go on dialysis, I can do whatever I want now, I can choose," said Ms Murray, who has just completed a course in medical administration and plans on studying to be a radiographer. [Read more]

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