Kidney Search
From The New York Times Magazine, By MALIA WOLLAN
Waiting for a donated organ is a long shot, and buying one is illegal. But sophisticated software, combined with old-fashioned selflessness, could be a solution.
Before surgeons stitched a kidney from a 32-year-old former Marine into his abdomen in March, Mark Kim spent almost two years on dialysis. He had lot of time to think while hooked up to the machine, three times a week, as it pumped his blood out of his body, purified it and pumped it back in. Sometimes he found himself mulling over how odd it was that a new kidney — the one thing he needed most — was something money couldn’t buy.
When his kidneys first failed him, all sorts of people offered to donate one: his neighbor, his two 20-something nieces, two old friends, his sister. But none could follow through, mostly because of incompatible blood types. Such supply-and-demand mismatches can cause prices to skyrocket in a normal market, and indeed, Kim heard hints about the organ’s economic value along the way. Once, at a backyard barbecue, a woman whispered to him that her mother purchased a kidney on the black market for $100,000.
Despite the crushing demand, the sale of kidneys is banned in every country in the world except Iran. In the U.S., more than 100,000 people with renal failure are on the list for a deceased-donor kidney, typically waiting between four and five years. Last year, 4,270 people died waiting. Few but free-market absolutists would argue for repealing the 1984 law banning the organ trade in the U.S., but most would agree something should be done to increase the supply of kidneys for transplant. In a sense, though, there’s already a global glut: While we are born with two kidneys, we can function just fine with one. The problem is that they’re stuck inside of us.
Kim would have continued to wait on the national list, despite having several willing donors, were it not for a company called BiologicTx. Thanks to its software, Kim was able swap his sister’s kidney for the Marine’s kidney. The Marine, a woman named Liz Torres, gave up her kidney to ensure that her mother got a kidney, which came from a young social worker, Ana Tafolla Rios, who was a better match. Rios passed hers along to secure one for her ailing mother from Keith Rodriguez, a young man from Fresno. He let go of his to procure one for his mom, Norma, a 52-year-old dental assistant with polycystic kidney disease. All these people underwent surgery over two days in March at the California Pacific Medical Center in San Francisco, in what is called a kidney-transplant chain. The software programs driving such chains create something like a marketplace for organs — but one where supply and demand are balanced not through pricing but through altruism.
A law-abiding American in need of a kidney has two options. The first is to wait on the national list for an organ donor to die in (or near) a hospital. The second is to find a person willing to donate a kidney to you. More than half the time, such donor-and-recipient pairs are incompatible, because of differences in blood type or the presence, in the donor’s blood, of proteins that might trigger the recipient’s immune system to reject the new kidney. The genius of the computer algorithms driving the kidney chains is that they find the best medical matches — thus increasing the odds of a successful transplant — by decoupling donors from their intended recipients. In the United States, half a dozen of these software programs allow for a kind of barter market for kidneys. This summer, doctors will most likely complete the last two operations in a record-breaking 70-person chain that involved flying donated kidneys on commercial airlines to several hospitals across the country. {Read more]
From Channel 10, Columbus, Ohio
BLACKLICK, Ohio - When Lori Coulter gets in her van and backs out her driveway, she's doing more than just running errands. She hopes she's saving her life.
"I have polycystic kidney disease," she said. "I inherited it from my mother."
The illness has destroyed her kidneys twice. She got a transplant 14 years ago, which worked for a while.
"It was a cadaver, so very unusual for them to last that long," she explained.
Now she needs another one. Her husband is not a match, so Lori decided to write her plea for a Blood-type-O kidney on her car windows.
"I thought why not? It doesn't cost me anything and I've been looking for other ways, other than Facebook, to get the word out there."
Someone snapped a picture and posted it on Facebook. It has gone viral on the internet. More than 25-hundred people have "liked" it.
"A couple weekends ago I had four people stop us. A lot of them will drive by and honk and wave, and say I'm writing down your number."
Lori said that her husband was stopped by a man in a grocery store, who had seen the plea for a kidney across the car's windows. She said that he told her husband, " I'm AB negative. Can you use that instead? I'll do whatever you need. "
Her mobile advertisement is getting results. She stays in touch with the OSU transplant center to see if anyone is volunteering to donate a kidney.
"They got 21 applications one day, and 11 were for me," she said, marveling.
Lori's very touched by the compassion of strangers. But she knows most of those offers won't work for her. They'll be the wrong blood type, have the wrong antibodies...or the applicants will have health problems that prevent them from donating. So she takes her medicine, severely limits the amount of water she drinks, undergoes dialysis,,,and lives with hope that someone...somewhere...will help save her life.
"I feel very loved. I feel very blessed," she said.
More than 101-thousand Americans are waiting for a kidney transplant. If you want to help Lori or any other patient in need of a kidney, check the links below to the OSU transplant program and Lifeline of Ohio.
From CTV Vancouver, Canada, by Andrew Weichel"I have polycystic kidney disease," she said. "I inherited it from my mother."
The illness has destroyed her kidneys twice. She got a transplant 14 years ago, which worked for a while.
"It was a cadaver, so very unusual for them to last that long," she explained.
Now she needs another one. Her husband is not a match, so Lori decided to write her plea for a Blood-type-O kidney on her car windows.
"I thought why not? It doesn't cost me anything and I've been looking for other ways, other than Facebook, to get the word out there."
Someone snapped a picture and posted it on Facebook. It has gone viral on the internet. More than 25-hundred people have "liked" it.
"A couple weekends ago I had four people stop us. A lot of them will drive by and honk and wave, and say I'm writing down your number."
Lori said that her husband was stopped by a man in a grocery store, who had seen the plea for a kidney across the car's windows. She said that he told her husband, " I'm AB negative. Can you use that instead? I'll do whatever you need. "
Her mobile advertisement is getting results. She stays in touch with the OSU transplant center to see if anyone is volunteering to donate a kidney.
"They got 21 applications one day, and 11 were for me," she said, marveling.
Lori's very touched by the compassion of strangers. But she knows most of those offers won't work for her. They'll be the wrong blood type, have the wrong antibodies...or the applicants will have health problems that prevent them from donating. So she takes her medicine, severely limits the amount of water she drinks, undergoes dialysis,,,and lives with hope that someone...somewhere...will help save her life.
"I feel very loved. I feel very blessed," she said.
More than 101-thousand Americans are waiting for a kidney transplant. If you want to help Lori or any other patient in need of a kidney, check the links below to the OSU transplant program and Lifeline of Ohio.
With nearly 500 British Columbians anxiously awaiting organ transplants, there are new calls to make everyone in the province donors by default.
According to the Kidney Foundation of Canada, only 19 per cent of B.C. residents are registered organ donors. That’s a surprisingly low number considering a poll conducted just last year found 95 per cent of the province’s adults support donation.
The answer, according to some advocates, is the system known as presumed consent.
“It’s the gift of life,” kidney disease survivor Joel Solomon told CTV News, “and there is so much suffering that is unnecessary.”
Solomon made a passionate case for presumed consent at the 2015 Kidney Transplant Summit in Vancouver Friday. The system has already been introduced in dozens of European countries, and Solomon said some of them saw donation rates increase as much as 30 per cent.
Most countries also give people the ability to opt-out, but the idea of automatic enrollment is still controversial in Canada.
For Solomon, the issue boils down to basic human decency.
Solomon was diagnosed with polycystic kidney disease, a genetic condition, in his early 20s. As he aged, his kidney function started to deteriorate, and in 2007 he was told he’d be on dialysis in months if he didn’t find a donor.
“I had watched my father die on dialysis, and I thought if there’s a way to skip that then I want to try,” he said.
Due to his rare blood type, Solomon learned there was an average wait of more than 12 years for a cadaver kidney, so he decided to put out an email plea for a donation to his friends. It was the hardest thing he’d ever written.
Fortunately, his story had a happy ending.
“One of my friends offered me her kidney,” he said. “In November of that year I became the first in my genetic lineage to live through polycystic kidney disease.”
But since his surgery, Solomon’s heard many heartbreaking stories from other kidney disease sufferers who couldn’t bring themselves to ask. It might not be such a problem, if not for the low donation rate in B.C.
The low rate may be partly due to people mistakenly believing they're registered, unaware the province's donor decal system that let people sign up along with their driver's licence or Care Card is no longer valid.
“It’s really surprising how many very well educated people don’t know about this,” Solomon said.
The only way to ensure your organs are donated after you die is to register at the B.C. Transplant website, which boasts that a single donor can save up to eight lives.
Dr. Stephen Beed, an intensive care physician in Halifax who’s a member of the Organ Donation and Tissue Expert Advisory Committee, said the issue of low donor rates is a problem across Canada.
“For a wealthy country with a very well-developed medical system and a population that repeatedly says that they’re supportive of donation, our performance is mediocre at best,” Beed said.
But not everyone believes presumed consent is the answer. Beed said implementing automatic enrollment could do more harm than good by scaring people away from donation.
“This topic generates very strong opinions among I think a small percentage of the population, but that group has not been hesitant to let their voice be heard,” Beed said.
“And unfortunately, it flavours and even takes over the whole argument.”
It could be possible to successfully introduce presumed consent in Canada, Beed added, but for now he’d prefer to see health care providers focus their effort on improving the identification and referral of potential donors.
To become an organ donor or check if you’re already registered, visit the B.C. Transplant website.
Gift of Life
From Niagara Falls Review, Canada, By Ray Spiteri,
During a series of presentations at the McLeod Rd. school, the Ridgeway resident discussed how her father suffers from polycystic kidney disease and has had two kidney transplants.
If not for the two life-saving operations, he would likely not be alive today, said Connor.
Now, during Organ and Tissue Donation Awareness Month, the 38-year-old teacher is telling another, yet similar, story.
Connor learned she inherited the same genetic condition from her father. Two years ago, she was put on dialysis as she went into renal failure and remains on the organ transplant waiting list.
Connor spent some time at the Niagara Health System's dialysis units in Niagara Falls and St. Catharines and now does home dialysis three days a week for 3 1/2 hours a day.
"It's difficult, especially because I have two kids at home," she said. "I have a 17-month-old and I have a six-year-old. I would liken it to having another part-time job."
Although Connor said she has a "tiny bit of (kidney) function left" and does dialysis less than many other patients have to, it's still a "taxing process."
"My kidneys aren't cleaning my blood on a daily basis, I don't feel 100% all the time. I still have other health effects that I struggle with on a daily basis."
Connor and the NHS encourage Niagara residents to register as an organ and tissue donor.
According to the NHS, while 80% of Ontarians say giving consent in advance is very important to them, only 27% across the province and 29% in Niagara have registered.
Connor said she believes Ontarians realize the importance, but "much like everything in life," are procrastinating. And Connor said while she understands why becoming a donor can be a sensitive issue for some, she encourages people to educate themselves.
"I don't really try to push everybody to do it, but what I ask is just to make sure that you educate yourself and make an educated decision. There are lots of resources out there."
The registration process can be found at www.beadonor.ca. [Read more]
PKD Fundraising
A Watford family affected by a genetic kidney disease has raised more than £2,500 for the Polycystic Kidney Disease Charity.
Tim Dennis, 35, from Woodside, ran the London Marathon last weekend to raise money and awareness for the charity after his partner Carly A’Len, 32, and most of her family were diagnosed with PKD.
PKD is an incurable kidney disease which causes cysts to grow on the organ and can eventually lead to kidney failure.
Carly’s three sisters, Lisa, 26, Laura, 29, and Tanya Burke, 35, also have the condition, as does their mother Rosemary, 59.
Their children will be tested when they are 18 to see if they also have inherited the disease.
The family also organised a quiz night at the Woodside Community Centre, The Brow.
Carly's dad Tony said: "We raised more than £2500 for the Polycystic Kidney Disease Charity, thanks to the quiz night and all the people who donated to the Just giving page.
"Local businesses were very generous in donating prizes for us to raffle/auction.
"Tim ran a personal best time of four hours and 22 minutes and Tess Harris, the PKD charity CEO, was very pleased with everyone's efforts to make this event a success.
"Also as a result of the publicity, one of my old friends is going to walk Hadrian's Wall in June for the charity."
Living with PKD
Lewis auditioned for the team last year as a fitness goal, and a 40th birthday gift to herself. She immediately garnered national recognition for her accomplishment.
“It was a whirlwind. It went by so fast, and it was such an amazing experience,” said Lewis of her first season with the team. “It brought so much joy to my life, I felt like I just had to do it again.”
Her story became even more inspirational because of her illness. She was diagnosed 15 years ago with polycystic kidney disease; a disease that will eventually require dialysis, a kidney transplant, and currently has no cure.
“I honestly had no idea that anyone would be interested in my story, but just being able to share it with people, I think has really been a blessing for me,” Lewis said. “I was very guilty of not letting people know about my health issues, and this has kind of been able to give me a platform to discuss that and to be a voice for others.”
For the moment, she remains positive and enjoys her many trips with the team and her fellow cheerleaders. There are 36 members on the squad, nine of those members being from the Hattiesburg area.
Although the girl time, pom-poms, and uniforms are fun, Lewis is also a wife and mother of two boys, 12 and 15 years old. She balances her time between the Superdome, and her home with grace.
“The difference between Sunday and Monday is that on Sunday, I'm in the Superdome, there are 80,000 fans, we're cheering, dancing, signing autographs, taking pictures, and on Monday morning, I'm right back into mom mode,” Lewis said with a laugh. “I'm ironing school uniforms, making school lunches. It's such a contrast and I love that.”
The Saintsations only allow each member a maximum of four years on the team. Tentatively, Lewis plans to audition next year as well.
“I would love to do it as many times as I can,” said Lewis. “A lot of that will depend on my family situation, right now with our family dynamics it works really well. My boys are old enough to understand and really enjoy what we're doing. As long as it works with my family, and my health is good, I would love to continue to do it for four years.”
PKD Research
From The Telegram, St John's, Newfoundland, Canada
Mitch Sturge, systems officer for CHIA (Centre for Health Information and Analytics) explains how information is stored and analyzed on huge computer systems at the IBM High Performance Computing Enviroment at the opening of the Craig L. Dobbin Genetic Research Centre Friday.
Centre will enable researchers to work on curing genetic diseases
Averell Childs knows well that his genetics defines him. Beyond his eye and hair colour, skin tone and height, there’s part of his genetic code that has had a devastating impact on his family.
“To say that kidney disease has impacted my family is an understatement. To a large degree, it has defined my family,” he told the audience attending the official opening of the Craig L. Dobbin Genetics Research Centre on Friday.
The centre is located in a new building adjacent to the Health Sciences Centre.
“As I think back to my younger years I can’t think of a time when there wasn’t someone in my extended family that wasn’t sick, and by sick I mean bearing the effects of ADPKD,” Childs continued.
ADPKD is autosomal dominant polycystic kidney disease. His grandmother died from it at the age of 42. His father died from it at the age of 61. Of his three siblings, two of them also have ADPKD, along with Childs. His youngest sister has 20 per cent kidney function and is awaiting a transplant.
Childs’ story was certainly an effective way to bring across just how important the Craig L. Dobbin Genetics Research Centre is. In many ways, the centre is merely a reorganizing of how the people who work in the various fields of genetics are spread out. But as any geneticist will tell you, reworking a code in the smallest way can have huge consequences.
Geneticist Dr. Pat Parfrey told those in attendance how difficult it is when people who find families with genetic diseases, people who find the genes that cause them, people who find how the genes work, people who work with the families to improve their lives and people who bring that information to the larger population, all working in different physical places. There’s a break in the pattern of communication.
“There are families of people who have got bad diseases. A lot of people don’t understand the nature of the disease, what the outcomes can be and what the management of the disease can be. They don’t understand the cause of the disease. And then they don’t understand how you causate the genetic findings that we find to the population,” Parfrey said.
The opening of the centre and the bringing together of the people who work in the various aspects of genetics means the people working in the field can make more discoveries and answer more questions. That means a better life for people with genetic diseases. [Read more]
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