Sunday, March 29, 2015

Chain of Life; Neighbor Gives Life; Slowing Kidney Disease in Kids

Gift of Life

From CBS News

Altruistic donor and the transplant chain she inspired

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Zully Broussard donated her kidney to Oswaldo Padilla, whose relative wasn't able to donate because the relative wasn't a compatible match.

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Keith Rodriguez wanted to give his mother Norma the kidney she needed, but he couldn't because they weren't a match. She got a kidney as part of the donation chain, and he gave his to a stranger.

Zully Broussard loves life and says she wants others to get a chance to appreciate it, as well.
"I just want them to have that quality of life," she told CBS News. "I want their loved ones to know they're going to be around."

Earlier this month, the 55-year-old Northern California woman donated one of her kidneys to a stranger, setting off a rare chain reaction of donations.

There are many people who want to donate their kidney to a loved one in need, only to discover that their blood types aren't compatible.

Oswaldo Padilla 26, spent the last two years on dialysis, needing a new kidney. His sister-in-law, Sonia Camacho, couldn't donate to him because of their blood types. When instead he received Broussard's kidney, that freed up Camacho to donate to another stranger in need. The chain continued, leading to a total of six new transplants in early March at San Francisco's California Pacific Medical Center.

The 12 patients - six donors and six recipients - met this week for their first reunion since the operations, captured exclusively by "CBS This Morning."

The pairs of donors and recipients were matched with the help of a computer software program developed by a kidney transplant recipient, David Jacobs, who underwent his life-saving operation at the same San Francisco hospital in 2004.

Even though the 11 other patients were strangers, Broussard felt like she had helped her own loved ones.

"I feel like they're family even though we just met today," she said. "There's connections there."

Broussard has had a difficult time with illness in her own family. One of her sons died of cancer at a young age. Her husband also died of cancer just over a year ago. When her friend suffered kidney failure, Broussard volunteered to donate. The friend ended up receiving a kidney before Broussard could give her own. Broussard instead gave her kidney to a stranger in need.

"If I had four kidneys, I'd give away three," she said. [Read more]


From Marinij.com, San Rafael, CA

Lib at Large: Kidney donor a perfect match for singer-songwriter, in love, too


Singer-songwriter Jesse Brewster plays guitar as his wife, Sarah, sorts the mail at their San Rafael home. He suffers from polycystic kidney disease but is doing much better after Sarah gave him one of her kidneys. (Frankie Frost/Marin Independent Journal)

Their friends and families have always thought Marin singer-songwriter Jesse Brewster and his wife, Sarah, are a perfect match. Now they know they are.

The Brewsters have been recuperating at home from transplant surgery that gave him one of her kidneys, saving his life.

“It’s the most precious gift you can give, literally a piece of yourself,” says Allyson Paige, Jesse’s friend and musical collaborator. “Soul mates is such a cliche, but if ever there was a couple who are meant to be together, they’re that couple.”

It doesn’t happen every day that a wife has the blood type, the antigens, tissue markers and other factors that make her compatible to donate an organ to her husband. Although there are no firm statistics on this, Joel Newman of the United Network for Organ Sharing says the odds are less than one in 10. One friend calls it divine providence.

“We have a large number of factors that match,” Sarah said one morning this week, sitting beside her grateful husband on a couch in their San Rafael home. “Normally, you don’t have that unless it’s a familial match. So that’s been the joke, that we’re distant cousins.”


Forty-year-old Jesse has known since he was 20 that he had inherited polycystic kidney disease (PKD), one of the most common life-threatening genetic diseases, affecting an estimated 12.5 million people worldwide. People with PKD develop cysts that fill their kidneys with fluid, enlarging them and causing bleeding and severe pain.

“When he told me that he had the disease, it was the first time I’d heard of it,” Sarah says.

“For how prevalent PKD is, not a lot of people know about it and it doesn’t get a lot of funding,” Jesse adds.


EPIPHANY

To raise money and awareness, Jesse’s debut album, 2005’s “Confessional,” was a benefit for the PKD Foundation (pkdcure.org), an organization committed to discovering treatments and a cure. He dedicated a song on the record, “One Reason,” to his older brother, Jim, who died of an aneurysm caused by PKD when he was 29. The disease has also seriously debilitated his father.

“My brother was one of my biggest supporters musically since I was 12,” Jesse says. “His death opened my eyes about how serious this disease is. It changed my whole outlook on life, about living it to the fullest. I was already involved in music, but after he passed away, it really cemented that it was what I wanted to do. You never know how much time you have.”

Since there is no cure yet for PKD, the Brewsters had known for the eight years they’ve been married that the day might come when Jesse would need a kidney transplant. [Read more]



From Lansing State Journal, Livonia, Michigan, by Karen Smith, Michigan.com

Livonia man to donate kidney to his neighbor


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You might expect someone to give a neighbor a cup of sugar. But Jeff Sieber of Livonia is giving his neighbor a kidney.

Sieber, 53, is donating a kidney later this month to Linda Zukowski, 51, who lives a block and a half away in Castle Gardens subdivision.

"This is more than any typical neighbor would do," said Zukowski, who has a hereditary kidney disease that is fatal unless she has a transplant or goes on dialysis . "He's willing to put his life on hold for me and to alter his lifestyle for a short period of time."

Sieber, a salesman for A123 in Livonia, will have to take it easy until his remaining kidney adjusts to doing the work of two kidneys, refraining from lifting and giving up his beloved bike riding for about eight weeks.

Still, "it was a no-brainer," Sieber said of his decision. Then, joking, he said, "I told her my liver's off the table. I have plans for the liver."

The neighbors have been friends since Zukowski started a playgroup about 20 years ago after moving to Castle Gardens. The Siebers had moved there from Dallas and didn't know anyone. Their mailbox was one of the ones in the sub Zukowski had slipped a note into, asking if they wanted to get their children together to play.

Several families in the playgroup have remained friends through the years, sharing each other's struggles and celebrating each other's successes. Some of the couples travel together now that their kids are grown.

Initially, Zukowski had a few other people offer to donate her a kidney, including her husband. Doctors thought one of them would be a good match and scheduled an operation for December. But in November, they found out Zukowski's body would likely reject the donor's kidney because of differing antibodies.

Zukowski, who is on medical leave from her job at Valassis in Livonia, started a Facebook page to create awareness of her need for a kidney and let people know about live organ donations.

When Sieber's wife told him the news that Linda's intended donor wasn't a good match, he couldn't sleep that night. "I knew the next morning I wanted to do this; from there it's just been moving forward."

Sieber said a sermon he heard at his church, Holy Trinity Lutheran, confirmed his decision. And, he thought of his mother Ellen Sieber, 71, of Turtle Creek, Pa., who lost a kidney 42 years ago. "My mom is still alive and lives a very full life (with one kidney)," he said, adding she has been a positive role model.

After she started the Facebook page, more relatives, friends, coworkers and other members of the playgroup came forward, willing to donate a kidney to her including Sieber and his wife, Tammy. A total of 15 offered, and 13 were tested before doctors concluded Sieber was the best match of the bunch. "That's quite a testament to the person she is," Sieber said of the number of people willing to undergo an organ transplant for Zukowski.

Zukowski has polycystic kidney disease, which has reduced her kidney function to 10 percent. Her mother, Patricia Zondlak, 78, of Wixom has the same disease and received a cadaver kidney 25 years ago this May from a young man who had died. The transplanted kidney continues to work well today.

Zukowski said many people don't know about live organ donations, which in addition to kidneys can include parts of the liver, lung, pancreas, intestine and skin "without detriment to the donor." [Read more]



PKD Research

From Fresno Bee, Fresno CA, by BY ALAN BAVLEY, The Kansas City Star


Two-year-old Marley Martinac has a serious chronic kidney disease, but she's going to have a better shot at a healthy life than kids born just a decade earlier.

Thanks largely to an ongoing national study with leadership at Children's Mercy Hospital in Kansas City, doctors now have a clearer picture of the best ways to stop or slow the progression of kidney disease in children like Marley.

The goal is to keep the children growing and thriving for as long as possible, preventing, or at least postponing, the need for kidney dialysis or a transplant.

"Thank God, we're not at that point at all," said Marley's mother, Katie Martinacof Bates City, Mo. "She's pretty spunky. She hasn't lost that."

About 16 percent of the U.S. population has chronic kidney disease, a gradual loss of kidney function caused by high blood pressure, diabetes and a variety of other conditions. How many children have these conditions isn't known, but 2,500 children nationwide are on dialysis and more than 5,000 have received kidney transplants.

"We're aiming to head things off in childhood," said Children's Mercy kidney specialist Bradley Warady, "to prevent children from requiring dialysis or a kidney transplant, or maybe delay it to give children more chance to grow and for their minds to develop."

Warady, along with researchers at Children's Hospital of Philadelphia, is coordinating the Chronic Kidney Disease in Children (CKiD) Cohort, a study that since 2003 has been following close to 900 children with mild to moderate kidney disease recruited from medical centers across the United States and Canada. Their research, funded by the National Institutes of Health, is now the largest long-term study in North America of any chronic childhood disease.

Research by the CKiD group, published recently in the American Journal of Kidney Diseases, shows that the severity of three common conditions in children with kidney disease - high blood pressure, anemia and protein loss through urine - predict how quickly their disease will worsen. For example, when urine has high protein levels, kidneys deteriorate twice as fast.

Because these conditions are all treatable, Warady said, the study offers doctors guidance for improving their patients' care.

"We want to detect it when it's mild and easier to intervene," he said. "We have the tools to treat these things. But the treatment hasn't been done yet in a consistent way. This emphasizes the importance of these factors. It raises awareness of how significant they are."

Doctors have not had much data on childhood kidney disease, said Joseph Vassalotti, chief medical officer of the National Kidney Foundation. This research "really advances our understanding of the natural history of chronic kidney disease in children."

These diseases include birth defects, such as abnormally developed kidneys that don't work well or blockages in the kidney's plumbing; genetic conditions such as polycystic kidney disease, in which fluid-filled cysts destroy kidney tissue; and a variety of diseases that attack the hundreds of thousands of tiny clusters of blood vessels that filter the blood.

"There's a lot to childhood kidney disease," Warady said. "It's a lot more complicated than 'I just don't pee.'"

Marley has a condition called nephrotic syndrome that causes her kidney damage. Doctors at Children's Mercy aren't sure what is responsible, but they've been able to keep the condition under control.

Marley's mother remembers that it was Christmas Eve of 2013 when her daughter's eyes began to redden and swell. As Marley was taken from pediatrician to pediatrician who said she had allergies, her condition worsened. "Her body was so swollen, and her skin was splotchy and white," Martinac said.

At the Children's Mercy emergency room in April, doctors discovered that protein was spilling into her urine. Healthy kidneys don't let much protein pass through their filters. But when those filters are damaged, protein can leak through. And the protein release itself can lead to more kidney damage. [Read more]


From WhaTech
Most polycystic kidney disease cases global clinical trials review, H1, 2015 analysis, trends and forecast shared in new research report

Clinical trial report, Polycystic Kidney Disease Global Clinical Trials Review, H1, 2015" provides data on the Polycystic Kidney Disease clinical trial scenario. This report provides elemental information and data relating to the clinical trials on Polycystic Kidney Disease.

It includes an overview of the trial numbers and their recruitment status as per the site of trial conduction across the globe. The databook offers a preliminary coverage of disease clinical trials by their phase, trial status, prominence of the sponsors and also provides briefing pertaining to the number of trials for the key drugs for treating Polycystic Kidney Disease.

Note: Certain sections in the report may be removed or altered based on the availability and relevance of data for the indicated disease.

Click Here To Download The sample Copy Of This Report:http://www.marketresearchreports.biz/sample/sample/255159

Scope

- Data on the number of clinical trials conducted in North America, South and Central America, Europe, Middle-East and Africa and Asia-pacific and top five national contributions in each
- Clinical trial (complete and in progress) data by phase, trial status, subjects recruited and sponsor type
- Listings of discontinued trials (suspended, withdrawn and terminated)
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Read more here: http://www.fresnobee.com/2015/03/25/4445703/getting-a-clearer-picture-of-how.html#storylink=cpy


Read more here: http://www.fresnobee.com/2015/03/25/4445703/getting-a-clearer-picture-of-how.html#storylink=cpy

1 comment:


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