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Finding Strength From Within - Laguna Beach Independent PDF Print
Finding Strength From Within - Laguna Beach Independent

Mud-splattered Lexi del Toro after running in a kidney research fundraiser. It’s personal for her: she has kidney disease.

Lexi Del Toro, 17, a top water polo player at Laguna Beach High School, spent spring break surfing in Mexico as well as taking the ACT, a college entrance exam.

Even so, she’s no typical teenager. Two years ago, she confronted her own mortality, learning she is afflicted with incurable kidney disease, the same disorder that killed her grandfather. It will not kill her, according to her doctors. Lexi can take medication, but faces a lifetime of managing her illness.

Instead of feeling sorry for herself, Lexi decided that her condition would make her a stronger person.

Today, Lexi’s goal is to raise awareness about a disease she now knows intimately and to explain to youngsters like herself that the affliction can strike them as well as the elderly, who are more typically associated with the malady.

“I got lucky that I responded well to the medication I received,” she said, “but I heard that there was no big evolution in the treatment in the last 40 years. So I thought that there was something wrong with that. That’s why I decided to get really involved in this cause; to make a difference,” she said.

She first joined the board of Kidney for Life, an organization founded by her grandmother, Susan Brotman, and her friend, Dorothy Liener, vice-president and president, respectively. The Newport Beach foundation focuses on improving patient care and supporting UCLA’s nephrology department chair, Dr. Ira Kurtz.

She decided to join the cause actively after her grandfather died of kidney disease last December. The two most common causes of kidney disease are diabetes and high blood pressure and people with a family history of any kind of kidney problem are also at risk for kidney disease, according a National Institute of Health website. Even so, Lexi’s illness is not thought to be hereditary. “He was in fact my step grandfather, so we were not blood related. But he was the person I loved the most in the world and I decided to join my grandmother’s organization,” Lexi said.

Lexi, who started playing water polo at 9, now plays for SET water polo club and the high school’s girls’ team. When they heard Lexi’s news, her teammates and especially her coach, Ethan Damato, provided some welcome guidance.  “He tried to teach me to focus on the water, saying that in the water, I can clear my mind and stop worrying about my problems. It really helped to receive that kind of support,” she said.

Damato describes Lexi with admiration, unsurprised she decided to create her own support group, The Love Your Kidney Club, at the high school High School earlier this year. “Everybody that knows her knows that she is a very strong person with a tough mentality,” Damato said. “When she was diagnosed with her condition, she never skipped a beat. She is one of the strongest player of our team and I am sure that whatever she is going to do, she will make a difference,” he said.

The Love Your Kidney Club made a splash last month at the Irvine Lake Mud Run, a Kidney for Life event that Lexi thought sounded like fun. “We were one of the biggest teams with 40 people,” she said. Entry fees benefit UCLA’s kidney disease research.

While Lexi acknowledges most the of mud-run participants were teammates or family, she envisions planning other events that attract a broader base.

Kurtz, who head’s UCLA’s nephrology department, appreciates Lexi’s efforts, especially since fundraising for kidney research is harder due to the poor  economy he said. “Having such a young person involved is really unusual and wonderful,” Kurtz said. “It helps with two issues; raising awareness and having people checked by a doctor because kidney diseases are silent, people cannot feel any symptoms before the kidneys are really affected. What Lexi does is really interesting,” he said.

There are many different types of kidney diseases. So many that according to Dr. Kurtz, it is even hard to put a number on it. “We can say that the most common kidney disease is diabetes,” he said, “But basically, when you have renal problems, that means that the blood filters in your kidneys stop functioning as they should,” he said.

At least 20 million Americans cope with chronic kidney disease and 20 million more are at risk, the National Kidney Foundation estimates. In 2009, the most recent statistics available, about 400,000 patients learned they require dialysis or a kidney transplant to stay alive.

Lexi, who will be a senior next year, expects the club will survive after her graduation. “My younger brother, Nolan, who is 14, is already extremely active and I hope he could be tempted by keeping the club going after I left,” Lexi said, “and maybe in the future some students will continue the group after us. That would be great and that would mean that we have reached a part of our goals,” she said.

Related posts:

  1. Getting Dirty Over Kidney Research
  2. Finding Connections a Continent Away
  3. Finding Common Cause Within the Safety Net
  4. Girls Water Polo Update

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Add kidneys to list of things that can be recycled - The Associated Press PDF Print
Add kidneys to list of things that can be recycled

CHICAGO (AP) — It turns out you can recycle just about anything these days — even kidneys and other organs donated for transplants.

Recently in Chicago, in what is believed to be the first documented case of its kind in the U.S., a transplanted kidney that was failing was removed from a patient while he was still alive and given to somebody else.

There have been other cases since the 1980s of transplant organs being used more than once, but they were rare and involved instances in which the first recipient died.

Typically when transplanted organs fail in living patients, doctors throw them away. But with more than 73,000 people awaiting transplants nationwide, some specialists say doctors should consider trying to reuse more organs to ease the severe shortage.

"The need for kidney transplantation doesn't match our capacity," said Dr. Lorenzo Gallon, a Northwestern University transplant specialist who oversaw the kidney recycling operation in Chicago. "People die on dialysis" while awaiting kidneys.

That was the possible fate awaiting two strangers. A research letter describing the unusual case was published in Thursday's New England Journal of Medicine.

The donated kidney lasted just two weeks in the first patient, a 27-year-old Illinois man. The same disease that ruined his kidneys started to damage the new kidney, given to him by his sister. He was getting sicker, and doctors needed to act fast if they were going to save the organ. With permission from the man and his sister, they removed it last July and retransplanted it into a 67-year-old Indiana man.

The Illinois man is back on dialysis and will probably get another transplant eventually.

Still, reusing a transplanted organ can be tricky — and riskier — because surgeons have to deal with scar tissue that typically forms around an organ as the body heals from the operation.

Also, Wayne Shelton, a bioethicist at Albany Medical College in New York, said the practice may raise ethical questions. He said doctors need to make sure patients who are offered reused parts understand all the risks and are not made to feel coerced into accepting such organs. And because these cases are so rare, there is little data on how patients with recycled parts fare, Shelton noted.

Dr. Jonathan Bromberg, director of transplantation at the University of Maryland Medical Center, praised the Northwestern doctors but said organ recycling is unlikely to become commonplace because it would be rare for an already transplanted organ to be healthy enough to be reused.

In Boston in 2009, a man died shortly after a getting a new heart, and the organ was in good enough shape to be transplanted into someone else. A 2005 medical journal report detailed three U.S. cases involving donor livers reused after the initial recipients died, and said they were among 11 similar cases between 1987 and 2005. Medical literature also includes reports from the 1990s about a kidney retransplant in Spain and a heart retransplant in Switzerland.

In the Chicago case, Ray Fearing of Arlington Heights, Ill., received a new kidney that was later reused by Erwin Gomez of Valparaiso, Ind., a surgeon familiar with the medical complexities involved.

Joel Newman, a spokesman for the United Network for Organ Sharing, said previous retransplants in the U.S. "have occurred when the original recipient has died soon after a transplant but the organ is still able to function. To our knowledge, this is the first publicly reported instance where a kidney has been removed from a living person due to the risk of organ failure and retransplanted."

Fearing had a disease that caused scarring that prevented the kidneys from filtering waste from blood. He had to quit his industrial machinery job and went on dialysis a year ago. His sister donated a kidney last June in what was "probably the happiest moment of my life," Fearing said. The worst, he said, was a few days later, when doctors told him the kidney was damaged and had to be removed.

Gallon, medical director of Northwestern's kidney transplant program, thought the kidney could be reused in somebody else if it was removed quickly, before it became irreversibly damaged.

Gallon needed Fearing's permission, and also asked the young man's sister, Cera Fearing.

Fearing said he was heartbroken and reluctant to abandon an organ that had been his only hope for a normal life. But he decided it was the only option that made sense. His sister, too, was crushed but said she didn't hesitate when told her kidney might help someone else.

"I just assumed it's damaged, it's garbage," she said. "The fact that they were able to give it to someone that somehow was able to benefit from it was great."

Gomez was selected because he was a good match. But Gallon said doctors also thought Gomez's medical background would help him understand the complexities. Gomez said he had never heard of reusing transplant organs, and he worried about taking what seemed like damaged goods. But he agreed after the Northwestern team explained the risks and possible benefits.

The removal and retransplant operations took place July 1. Within two days, the transplanted kidney had regained function. Gallon said he is convinced the damage is reversed.

Gomez is taking anti-rejection drugs and is off dialysis. "I finally feel normal," he said. Fearing is back on dialysis and said he is doing OK.

Gallon said it is not uncommon for patients with Fearing's disease to go through more than one transplanted kidney, and he expects Fearing will eventually get another one.

Despite his own misfortune, Fearing said he is "extremely happy about being a part of this medical breakthrough" that might end up helping others.

...

 
Recycling organs? Doctors have attempted it with livers, hearts, kidneys - Winnipeg Free Press PDF Print
Recycling organs? Doctors have attempted it with livers, hearts, kidneys - Winnipeg Free Press

Enlarge Image

In this photo taken and provided Wednesday, April 25, 2012, by Northwestern Memorial Hospital in Chicago, Dr. Lorenzo Gallon, transplant nephrologist and medical director of the kidney transplant program at Northwestern Memorial Hospital in Chicago, talks with Cera Fearing, left, her brother Ray Fearing, right, and Erwin Gomez, three patients involved in an unusual kidney retransplant case after the three met for the first time at the hospital. Cera Fearing donated a kidney to her brother. After only two weeks, his kidney disease attacked the donated organ, so doctors removed it last summer and transplanted it into Erwin Gomez, a Valparaiso, Ind. surgeon with kidney disease. It's believed to be the first time a living patient has donated a transplanted organ. (AP Photo/Courtesy of Northwestern Memorial Hospital, Laura Brown)

CHICAGO - It turns out you can recycle just about anything these days — even kidneys and other organs donated for transplants.

Recently in Chicago, in what is believed to be the first documented case of its kind in the U.S., a transplanted kidney that was failing was removed from a patient while he was still alive and given to somebody else.

There have been other cases since the 1980s of transplant organs being used more than once, but they were rare and involved instances in which the first recipient died.

Typically when transplanted organs fail in living patients, doctors throw them away. But with more than 73,000 people awaiting transplants nationwide, some specialists say doctors should consider trying to reuse more organs to ease the severe shortage.

"The need for kidney transplantation doesn't match our capacity," said Dr. Lorenzo Gallon, a Northwestern University transplant specialist who oversaw the kidney recycling operation in Chicago. "People die on dialysis" while awaiting kidneys.

That was the possible fate awaiting two strangers. A research letter describing the unusual case was published in Thursday's New England Journal of Medicine.

The donated kidney lasted just two weeks in the first patient, a 27-year-old Illinois man. The same disease that ruined his kidneys started to damage the new kidney, given to him by his sister. He was getting sicker, and doctors needed to act fast if they were going to save the organ. With permission from the man and his sister, they removed it last July and retransplanted it into a 67-year-old Indiana man.

The Illinois man is back on dialysis and will probably get another transplant eventually.

Still, reusing a transplanted organ can be tricky — and riskier — because surgeons have to deal with scar tissue that typically forms around an organ as the body heals from the operation.

Also, Wayne Shelton, a bioethicist at Albany Medical College in New York, said the practice may raise ethical questions. He said doctors need to make sure patients who are offered reused parts understand all the risks and are not made to feel coerced into accepting such organs. And because these cases are so rare, there is little data on how patients with recycled parts fare, Shelton noted.

Dr. Jonathan Bromberg, director of transplantation at the University of Maryland Medical Center, praised the Northwestern doctors but said organ recycling is unlikely to become commonplace because it would be rare for an already transplanted organ to be healthy enough to be reused.

In Boston in 2009, a man died shortly after a getting a new heart, and the organ was in good enough shape to be transplanted into someone else. A 2005 medical journal report detailed three U.S. cases involving donor livers reused after the initial recipients died, and said they were among 11 similar cases between 1987 and 2005. Medical literature also includes reports from the 1990s about a kidney retransplant in Spain and a heart retransplant in Switzerland.

In the Chicago case, Ray Fearing of Arlington Heights, Ill., received a new kidney that was later reused by Erwin Gomez of Valparaiso, Ind., a surgeon familiar with the medical complexities involved.

Joel Newman, a spokesman for the United Network for Organ Sharing, said previous retransplants in the U.S. "have occurred when the original recipient has died soon after a transplant but the organ is still able to function. To our knowledge, this is the first publicly reported instance where a kidney has been removed from a living person due to the risk of organ failure and retransplanted."

Fearing had a disease that caused scarring that prevented the kidneys from filtering waste from blood. He had to quit his industrial machinery job and went on dialysis a year ago. His sister donated a kidney last June in what was "probably the happiest moment of my life," Fearing said. The worst, he said, was a few days later, when doctors told him the kidney was damaged and had to be removed.

Gallon, medical director of Northwestern's kidney transplant program, thought the kidney could be reused in somebody else if it was removed quickly, before it became irreversibly damaged.

Gallon needed Fearing's permission, and also asked the young man's sister, Cera Fearing.

Fearing said he was heartbroken and reluctant to abandon an organ that had been his only hope for a normal life. But he decided it was the only option that made sense. His sister, too, was crushed but said she didn't hesitate when told her kidney might help someone else.

"I just assumed it's damaged, it's garbage," she said. "The fact that they were able to give it to someone that somehow was able to benefit from it was great."

Gomez was selected because he was a good match. But Gallon said doctors also thought Gomez's medical background would help him understand the complexities. Gomez said he had never heard of reusing transplant organs, and he worried about taking what seemed like damaged goods. But he agreed after the Northwestern team explained the risks and possible benefits.

The removal and retransplant operations took place July 1. Within two days, the transplanted kidney had regained function. Gallon said he is convinced the damage is reversed.

Gomez is taking anti-rejection drugs and is off dialysis. "I finally feel normal," he said. Fearing is back on dialysis and said he is doing OK.

Gallon said it is not uncommon for patients with Fearing's disease to go through more than one transplanted kidney, and he expects Fearing will eventually get another one.

Despite his own misfortune, Fearing said he is "extremely happy about being a part of this medical breakthrough" that might end up helping others.

___

Online:

New England Journal of Medicine: http://www.nejm.org

Organ donation: http://www.unos.org

...

 
Add kidneys to list of things that can be recycled - Wall Street Journal PDF Print

CHICAGO — It turns out you can recycle just about anything these days — even kidneys and other organs donated for transplants.

Recently in Chicago, in what is believed to be the first documented case of its kind in the U.S., a transplanted kidney that was failing was removed from a patient while he was still alive and given to somebody else.

There have been other cases since the 1980s of transplant organs being used more than once, but they were rare and involved instances in which the first recipient died.

Typically when transplanted organs fail in living patients, doctors throw them away. But with more than 73,000 people awaiting transplants nationwide, some specialists say doctors should consider trying to reuse more organs to ease the severe shortage.

"The need for kidney transplantation doesn't match our capacity," said Dr. Lorenzo Gallon, a Northwestern University transplant specialist who oversaw the kidney recycling operation in Chicago. "People die on dialysis" while awaiting kidneys.

That was the possible fate awaiting two strangers. A research letter describing the unusual case was published in Thursday's New England Journal of Medicine.

The donated kidney lasted just two weeks in the first patient, a 27-year-old Illinois man. The same disease that ruined his kidneys started to damage the new kidney, given to him by his sister. He was getting sicker, and doctors needed to act fast if they were going to save the organ. With permission from the man and his sister, they removed it last July and retransplanted it into a 67-year-old Indiana man.

The Illinois man is back on dialysis and will probably get another transplant eventually.

Still, reusing a transplanted organ can be tricky — and riskier — because surgeons have to deal with scar tissue that typically forms around an organ as the body heals from the operation.

Also, Wayne Shelton, a bioethicist at Albany Medical College in New York, said the practice may raise ethical questions. He said doctors need to make sure patients who are offered reused parts understand all the risks and are not made to feel coerced into accepting such organs. And because these cases are so rare, there is little data on how patients with recycled parts fare, Shelton noted.

Dr. Jonathan Bromberg, director of transplantation at the University of Maryland Medical Center, praised the Northwestern doctors but said organ recycling is unlikely to become commonplace because it would be rare for an already transplanted organ to be healthy enough to be reused.

In Boston in 2009, a man died shortly after a getting a new heart, and the organ was in good enough shape to be transplanted into someone else. A 2005 medical journal report detailed three U.S. cases involving donor livers reused after the initial recipients died, and said they were among 11 similar cases between 1987 and 2005. Medical literature also includes reports from the 1990s about a kidney retransplant in Spain and a heart retransplant in Switzerland.

In the Chicago case, Ray Fearing of Arlington Heights, Ill., received a new kidney that was later reused by Erwin Gomez of Valparaiso, Ind., a surgeon familiar with the medical complexities involved.

Joel Newman, a spokesman for the United Network for Organ Sharing, said previous retransplants in the U.S. "have occurred when the original recipient has died soon after a transplant but the organ is still able to function. To our knowledge, this is the first publicly reported instance where a kidney has been removed from a living person due to the risk of organ failure and retransplanted."

Fearing had a disease that caused scarring that prevented the kidneys from filtering waste from blood. He had to quit his industrial machinery job and went on dialysis a year ago. His sister donated a kidney last June in what was "probably the happiest moment of my life," Fearing said. The worst, he said, was a few days later, when doctors told him the kidney was damaged and had to be removed.

Gallon, medical director of Northwestern's kidney transplant program, thought the kidney could be reused in somebody else if it was removed quickly, before it became irreversibly damaged.

Gallon needed Fearing's permission, and also asked the young man's sister, Cera Fearing.

Fearing said he was heartbroken and reluctant to abandon an organ that had been his only hope for a normal life. But he decided it was the only option that made sense. His sister, too, was crushed but said she didn't hesitate when told her kidney might help someone else.

"I just assumed it's damaged, it's garbage," she said. "The fact that they were able to give it to someone that somehow was able to benefit from it was great."

Gomez was selected because he was a good match. But Gallon said doctors also thought Gomez's medical background would help him understand the complexities. Gomez said he had never heard of reusing transplant organs, and he worried about taking what seemed like damaged goods. But he agreed after the Northwestern team explained the risks and possible benefits.

The removal and retransplant operations took place July 1. Within two days, the transplanted kidney had regained function. Gallon said he is convinced the damage is reversed.

Gomez is taking anti-rejection drugs and is off dialysis. "I finally feel normal," he said. Fearing is back on dialysis and said he is doing OK.

Gallon said it is not uncommon for patients with Fearing's disease to go through more than one transplanted kidney, and he expects Fearing will eventually get another one.

Despite his own misfortune, Fearing said he is "extremely happy about being a part of this medical breakthrough" that might end up helping others.

___

Online:

New England Journal of Medicine: http://www.nejm.org

Organ donation: http://www.unos.org

—Copyright 2012 Associated Press

...

 
Dialysis Leaders Recommend Policy Changes to Address Under-Utilization of Home ... - Sacramento Bee PDF Print

WASHINGTON, April 25, 2012 -- /PRNewswire/ -- On the heels of the first National Summit on Home Dialysis Policy, Summit organizers released a report reflecting the views of the delegates -- leaders in the kidney disease patient, clinician, facility and industry communities -- on federal policy steps to improve utilization of home dialysis for patients who can benefit from this often advantageous form of treatment. Many of the organizers also announced they have formed a new alliance, called the Alliance for Home Dialysis, to advance the recommendations identified at the Summit.

The Summit's "Report of the Delegates" highlights key findings from a March 29th meeting in Washington, DC where experts probed why, despite widely accepted and well-documented benefits of home dialysis — improved outcomes, enhanced patient satisfaction, improved quality of life, and lower costs— fewer than ten percent of the more than 390,000 current U.S. dialysis patients receive treatment at home.  Current rates of home dialysis utilization reflect a steep decline from the 1970s, when almost 40% of U.S. dialysis patients were treated in-home.

Specifically, delegates found that policymakers should work with stakeholders in the dialysis community to confront three areas:

  • Accessibility:   Patients and clinicians face array of hurdles in education, training, and infrastructure that hinder equalized access to home dialysis.
  • Accountability:  Utilization of home dialysis can be improved through measures within government programs that are designed to recognize and support excellence in the delivery of home dialysis services.
  • Aligning Incentives:  Reimbursement policies, regulation of new technologies and other policy incentives can be realigned to better support federal policy goals of expanding access to home dialysis.  

The Report includes 15 recommendations to serve these goals, including that federal policymakers should:

  • Maintain parity for home and in-center dialysis in Medicare reimbursement;
  • Support home dialysis mentoring programs, particularly those that use existing patients as mentors; and
  • Align federal and state regulatory requirements for home therapies, such as revising the Centers for Medicare and Medicaid Services Conditions for Coverage requirements, to reflect differences in home and in-center dialysis.

A copy of the full report, can be found here.

Summit supporters will begin work through the new Alliance to dialogue with federal policymakers and advance policy improvements in the three consensus areas that emerged at the Summit.

SOURCE National Summit on Home Dialysis Policy

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