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Entries in Lung Transplant (8)

Saturday
Jun222013

Girl Wakes Up After Lung Transplant

Courtesy Tracy Simon(NEWTOWN SQUARE, Pa.) -- The 10-year-old girl whose family successfully fought a rule preventing her from qualifying for adult lungs has woken up nine days after receiving a lung transplant from an adult donor.

Sarah Murnaghan of Newtown Square, Pa., was able to respond to yes and no questions on Friday. Her aunt Sharon Ruddock confirmed to ABC station WPVI-TV in Philadelphia that even though Sarah is still on a ventilator she was able to communicate to her family by nodding and blinking.

On Wednesday she was moved off a heavy-duty breathing machine to a traditional ventilator.

Sarah was dying of cystic fibrosis when her family brought the Under 12 Rule, a little-known organ transplant policy, to national attention after arguing that it had been pushing Sarah to the bottom of the adult lung transplant waiting list.

The family won a court order to put Sarah on equal footing with adults on the transplant list and prompted an Organ Procurement and Transplantation Network policy change.

On June 12 Sarah underwent a lung transplant with lungs from an adult donor.

"Sarah got THE CALL," her mother, Janet Murnaghan, wrote on her Facebook page. "She will be taken back to the O.R. in 30 minutes."

There have been no reported complications from the transplant although Sarah's mother Janet Murnaghan cautioned that her recovery would be "hard and long" for the 10-year-old.

"As you all know, Sarah was very, very sick going into transplant, therefore the road out is hard and long," her mother, Janet Murnaghan, wrote on her Facebook page. "We are focusing all of our attention on Sarah and as a result are silent."

Sarah was born with cystic fibrosis, a genetic condition that affects cells that produce mucus, sweat and digestive fluid. Patients typically suffer so much lung damage that they often go into respiratory failure, requiring a lung transplant to survive.

Copyright 2013 ABC News Radio

Saturday
Jun152013

Boy on Lung Transplant List Happy for Sarah Murnaghan

Courtesy Peterson Family(HOUSTON) -- Jordan Peterson is 10 years old, suffers from cystic fibrosis and is on the pediatric lung transplant waiting list -- just like Sarah Murnaghan, the Pennsylvania girl who received a lung transplant Wednesday after her family successfully sued to make her more likely to get lungs from an adult donor.

Medical and legal experts have criticized the judge for sidestepping Organ Transplantation and Procurement Network policy, but Jordan is just happy to see another cystic fibrosis kid get a lucky break.

"I'm very happy for her 'cause, you know, she needed 'em more than I did, and she was on a ventilator and she was dying, so I was definitely really happy for her," Jordan told ABC News from Houston, where his family relocated in September 2012 to be within a few hours of Texas Children's Hospital. They're originally from Fargo, N.D., but since Jordan's doctors are in Houston, they needed to be nearby in case donor lungs became available.

Although the nation has been focused on Sarah for the past few weeks, other patients awaiting organ transplants have been left to watch the story unfold and wonder what it means for them.

Dr. Sander Florman, who directs the Mount Sinai Recanati/Miller Transplantation Institute, said his patients awaiting liver and kidney transplants have already asked whether legal action might be the best way to get the organs they need.

"I said, 'It wouldn't be fair for you to do this and be successful,'" Florman said. "Go promote organ donation. ... That's what all physicians should be telling people, what the judge should be telling people."

On the flip side, Dr. Alan Reinach, a pulmonologist who works at Holy Redeemer Health System outside Philadelphia, said patients have neither asked him nor his colleagues about how Sarah's case would affect them.

Sarah's family argued that the so-called Under 12 Rule, an organ transplant policy, had been unfairly pushing Sarah to the bottom of the adult lung transplant waiting list because it required adult lungs to be offered to adults before they could be offered to anyone younger than 12.

Her lawyers convinced federal Judge Michael Baylson on June 5 that the Under 12 Rule was discriminatory, prompting a temporary restraining order against Health and Human Services Secretary Kathleen Sebelius to prevent her from enforcing it for Sarah.

Baylson's ruling forced OPTN to create a second organ transplant database entry for Sarah with a fake birthday to trick the system into thinking she was 12 years old. On June 12, she got her transplant, which involved having the adult lungs resized to fit her 10-year-old body. It's the 11th lung transplant from a donor older than 18 to a child younger 12 since 1987.

Although Jordan's father, Dan Peterson, said he understood Sarah's situation was dire, it prompted him to ask Jordan's doctor questions about how the ruling would affect other people on the waiting list. Would it "reshuffle the deck?" he wondered. It's still not clear.

But Jordan had different questions.

"The press used the term 'end stage cystic fibrosis,'" Peterson said. "His biggest question was about that and when that was going to hit him."

But when she got lungs and was doing well after surgery, Jordan was relieved.

"He was thrilled," Peterson said. "His next words were 'OK, I'm next.'"

Jordan has been on the list since September 2012, and he's had three separate pediatric lung donor offers, but his surgeries didn't happen for different reasons. Once, the weather was so bad his doctors couldn't fly out of state to retrieve the organs. Another time, doctors spotted a contusion on the lungs at the last minute.

As Jordan woke up from the anesthesia after the "dry run" transplant attempts, he would groggily feel for scars on his chest to see whether he had new lungs, Peterson said. The first time Jordan realized there'd been no operation, his father watched as his face fell.

"But our philosophy has been that when that happens, we believe God gave us another day to be together, and we think of the donor family that doesn't have another day," he said. "When you put it in that perspective of what the donor family has gone through, it helps you get your perspective back where it should be."

This week, Jordan said he was feeling all right. He can't play sports like he did when he was younger because an infection damaged his lungs, but he was able to play in a pool on Thursday in the 95-degree Houston heat.

He said he's not afraid of surgery, and he's ready for new lungs "tonight, even right now."

Copyright 2013 ABC News Radio

Wednesday
May292013

Policy Makes Lung Transplant Less Likely for 10-Year-Old

Courtesy Murnaghan Family(NEWROWN, Pa.) -- If Sarah Murnaghan were 12 years old, she would be at the top of the adult lung transplant list because she only has weeks to live and a lung transplant would as-good-as cure her of cystic fibrosis.

But she's not 12, and if she doesn't get new lungs, she might not even make it to 11.

"We are not asking for preference for Sarah, we are asking for equality," Sarah's mother, Janet Murnaghan, said in a press release. "We strongly believe Sarah should be triaged based on the severity of her illness, not her age."

The Murnaghan family of Newrown, Pa., is fighting a little known organ transplant policy that is effectively pushing 10-year-old Sarah to the bottom of the adult transplant waiting list because it mandates that adult lungs be offered to all adult patients before they can be offered to someone under 12 years old.

Sarah has been on the pediatric waiting list for new lungs for 18 months, but since there are so few pediatric organ donors, there hasn't been a match. She's been living at Philadelphia Children's Hospital for two months connected to a machine to help her breathe, Sarah's aunt, Sharon Ruddock, told ABC News.

There were only 11 lung donors between 6 and 10 years old and only two lung transplants in that age group in 2012, according to an Organ Procurement and Transplantation Network statement.

However, since Sarah was eligible for an adult lung transplant, her family was both horrified and excited when her condition rapidly deteriorated earlier this month because they thought it meant she would get bumped to the top of the adult waiting list, Ruddock said.

"A week went by with nothing, no offers," Ruddock said. "They said, 'Well, you're not at the front of the line. It goes to all adults, and if all the adults turn them down, the lungs go to the kids.'"

Patients with cystic fibrosis, a genetic condition that damages the lungs, have an average life expectancy of 31 years old, said Dr. Devang Doshi, a pediatric lung specialist at Beaumont Children's Hospital in Michigan who has not met Sarah. But if they get a lung transplant, the condition is essentially cured.

"It's a very disheartening thing to hear and read about because you've got a child in desperate need of a transplant to survive...and people less qualified in terms of severity are able to get that organ instead of this child because of what's in place," Doshi said. "From a medical standpoint, we look at these types of hurdles and obstacles and sometimes get frustrated with the system."

So Sarah's family started an online petition on Change.org to persuade the Organ Procurement and Transplantation Network to change its policy. So far, they've gathered about 40,000 signatures.

The organization, which falls under the U.S. Department of Health and Human Services, responded on Monday that it can't make an exception for Sarah.

"OPTN cannot create a policy exemption on behalf of an individual patient, since giving an advantage to one patient may unduly disadvantage others," the statement read.

Doshi said he thinks children under 12 years old should be considered with the adult patients and awarded organs based on how severe their conditions are. Adult lungs may not perfectly fit child patients, but they can be used to save multiple children. One of his 6-year-old patients' got a partial lung donation from her mother several years ago in a last ditch effort to save her life.

Although adults make up the majority of the lung transplant waiting list, NYU Langone Medical Center's head bioethicist Art Caplan said children should be given priority if they're sicker than those adults, in part because children should be able to get more healthy years out of the lungs than adults.

"At the end of the day it's not so simple as kids versus adults," Caplan said, adding that chances of survival with the new organ and many other issues factor into the decision. "I think, however, there is a case that would say...most Americans -- as donors -- would want to give priority to children."

Doshi also said he thought that most adults would agree children should come first.

Sarah, who dreams of being a singer and a veterinarian, told her parents she wanted to fight for her life but not know how dire her situation was. However, Ruddock said she probably knows anyway. She lost her hearing a few weeks ago as a side effect of one of the antibiotics keeping her alive. At bedtime, she now asks her parents if she'll wake up.

Last Monday, Sarah's siblings and cousins gathered to say goodbye even though their parents didn't say that's what was going on, Ruddock said. On Friday, doctors told the family that they weren't sure Sarah would survive Memorial Day Weekend, but she pulled through.

"She was the little leader in our family. She would always get the little kids to put on a play for us," Ruddock said. "She's a bit of a pistol with a good personality to survive. She's not meek. She's a tough kid."

 

Copyright 2013 ABC News Radio

Wednesday
Dec192012

Woman Dies After Receiving Smoker's Lungs in Transplant

Jupiterimages/Thinkstock(NEW YORK) -- Jennifer Wederell, a 27-year-old British woman with cystic fibrosis, died of lung cancer after she received the lungs of a heavy smoker in an organ transplant.

According to BBC News, Wederell had been on the waiting list for a lung transplant for 18 months when in April 2011, she was told there was finally a match.  She received the transplant, apparently not knowing the donor had been a smoker.

In February 2012, a malignant mass was found in her lungs.  She died less than 16 months after the transplant.

Her father, Colin Grannell, said he believed his daughter had died a death meant for someone else.

"The shock immediately turned to anger insofar as all the risks were explained in the hour before her transplant," he told the BBC, "and not once was the fact smoker's lungs would be used mentioned."

Wederell's case raises difficult issues regarding organ transplants.  She was diagnosed with cystic fibrosis, a progressive and debilitating lung disease that affects more than 70,000 people worldwide, at the age of 2.  By her mid-20s, she relied on an oxygen tank 24 hours a day to survive.

Would she have been better off refusing the transplant, and hoping another set of organs became available that matched her blood type and came from a non-smoker?

"Probably not," said Dr. G. Alexander Patterson, surgical director of lung transplants at the Washington University and Barnes Jewish transplant center in St. Louis, one of the largest organ transplant programs in the nation.  "If she was critically ill and had poor chance of short-term survival, she was better off accepting the transplant."

Patterson said most hospitals, including those in the U.S., also transplant the lungs of smokers if they are of otherwise good quality.

"This is a necessity because there are far fewer donors than there are recipients and most patients who are on a waiting list would gladly accept a set of smoker's lungs in exchange for the ones they have, which usually have little chance of carrying them through to long-term survival," he said.

About 17,000 Americans receive a transplant each year, and more than 4,600 die waiting for one, according to United Network for Organ Sharing, the organization charged with allocating the nation's organs.  If surgeons do not accept less-than-perfect organs, Patterson said that the numbers might be much worse.

Harefield Hospital in London, where Wederell was treated, has since apologized to her family for not revealing all the information about her donor's medical history.  But Patterson said most transplant surgeons don't share such details with their patients unless they are asked directly.

Copyright 2012 ABC News Radio

Tuesday
May292012

Smokers Lungs Offer Survival Advantage

Stockbyte/Thinkstock(LONDON) -- Patients who underwent lung transplants lived an additional three years compared with patients who never received donor organs, even if the lungs they received came from people who had previously smoked, according to a new British study published in the Lancet.

Researchers led by Dr. Robert Bonser of University Hospital Birmingham analyzed how donor smoking history affected three-year survival rates using patients on the U.K. Transplant Registry between 1999 and 2010.

About 39 percent of the 1,295 lung transplants used lungs from donors who had previously smoked.  While the three-year survival rate for these transplant recipients was lower than for people who received lungs from nonsmokers and had more complications, survival was still better than for people who had never had transplants at all.

Their findings, the authors wrote, support a policy of accepting lungs from people with smoking histories.

“Donors with positive smoking histories provide nearly 40 percent of the lungs available for transplantation,” they wrote. “Rejection of this donor-organ resource would increase waiting-list mortality and is ill advised.

In an accompanying editorial, Drs. Marcelo Cypel and Shaf Keshavjee of the Toronto Lung Transplant Program explained that the risks and benefits of lungs from donors who smoked varied by country and transplant center.

In the U.S., the United Network for Organ Sharing, which manages the country’s organ transplant system, instituted a lung allocation system designed to make better use of the few donated organs available and to reduce the number of people who die while waiting for a transplant.

Each person on the waiting list is given a score indicating how severely ill the person is and how likely it is for a transplant to succeed.  The scores are used to determine priority once an organ becomes available.

This program, Cypel and Keshavjee wrote, “reduced mortality of patients on the waiting list without a substantial increase in lung donors.”

And while Bonser and his co-authors believe that lungs from donors who smoked shouldn’t necessarily be rejected, they recommend that patients “be informed that the use of such lungs could reduce their lifetime.”

Copyright 2012 ABC News Radio

Friday
Feb242012

Bride Races Against Cystic Fibrosis to Get to the Altar

Stockbyte/Thinkstock(NEW YORK) -- Doctors said Kirstie Mills Tancock may not make it to the alter without a new set of lungs.

The 21-year-old from Devon in the United Kingdom has cystic fibrosis, and just days before her dream wedding last year, her lungs filled with a life-threatening infection.

"I have spent every moment living like it was my last," said Tancock, who, until her health spiraled downward, was a fit athlete and worked as a pole dance instructor.

"I take life as it comes," she said.  "You never know what's going to happen.  Just because you know your life will end doesn't mean you have control."

Television cameras followed Tancock for four months last year as she simultaneously planned her wedding and waited for a lung transplant.  Breathless Bride: Dying to Live will air on TLC on Feb. 29 at 10 p.m. EST.

In the documentary, Tancock was confined to a wheelchair and hooked up around the clock to an IV for strong pain medication and antibiotics.  Just days after her June 16 wedding, she was medevaced to a London hospital for a lifesaving double lung transplant.

"Kirstie is a complete fighter," said her husband Stuart Tancock, 27, and a sports store manager, in the documentary.  "You can't put her down.  She'll fight for anything."

From a young age, Kirstie Tancock knew she was living on borrowed time.  She was born with cystic fibrosis, an inherited chronic disease that affects the lungs and digestive system.  About 30,000 children and adults in the United States have the disease.

Close to 1,000 new cases are diagnosed each year in the U.S., and about one in three people with the disease will die waiting for a lung transplant.

A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening infections, according to the Cystic Fibrosis Foundation.  The disease also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

Only a half century ago, few children with CF lived to attend elementary school.  Today, medical advances have extended the average life span of someone with CF well into their 30s and 40s.

According to the CF Patient Registry, nearly 1,600 people with the disease have received lung transplants since 1991.  As many as 90 percent are alive one year after transplantation and half are still living after five years. 

Copyright 2012 ABC News Radio

Wednesday
Dec142011

New Transplant Technique Keeps Lungs Breathing Before Transplants

New York Presbyterian Hospital(NEW YORK) -- Nancy Bloch, 60, of Westchester, N.Y., was physically fit and had no history of medical problems, but a routine checkup that involved a quick listen to her chest detected something she recalled her physician's assistant saying, "didn't sound right."

Bloch was diagnosed in 2007 with a rare lung disease called diffuse interstitial lung disease.  After her diagnosis, her health started quickly deteriorating.

After seven unsuccessful attempts to undergo a routine double-lung transplant, Bloch became in August the second patient so far at New York-Presbyterian Hospital to successfully undergo a revolutionary experimental approach to lung transplantation that could offer potentially more viable lungs to more patients like Bloch who are on the recipient wait list.

The technique, called "ex vivo" -- or, outside the body -- involves taking the lungs that were removed from the donor and placing them in a transparent case, where they are hooked up to a pump and ventilator.  The lungs are closely monitored for up to four hours as they are nourished with nutrients and antibiotics and pumped with oxygen.

In the traditional lung-transplant approach, the lungs are assessed in the deceased donor's body before being removed. If the lung is considered viable, it is stored in cold temperatures within a short window of time before the transplant.

But the new preservation technique "revives" the lungs in a transparent box by gradually warming the lungs to normal body temperature, and the organ is reinstated in an environment as if it is in the body. The lungs are assessed and reconditioned in the operating room until the final minute before being placed in the recipient's body.

In 2011, nearly 1,400 lung transplants were performed, according to the Organ Procurement and Transplantation Network, part of the U.S. Department of Health and Human Services.

"We have the potential to increase, even double, the number of transplants we're performing, and to satisfy the needs for more lung transplants," Dr. Frank D'Ovidio, the associate surgical director of the lung transplant program at NewYork-Presbyterian Hospital, said.

Copyright 2011 ABC News Radio

Wednesday
Oct272010

Opera Singer Thrives After Double Lung Transplant

Photo Courtesy - Bill Clark/Roll Call/Getty Images(SAN DIEGO) -- Opera singer Charity Tillemann-Dick, 26, took the stage Tuesday to open this year's TEDMED conference with an exquisitely sung aria.  The conference marks an important anniversary for the singer -- a year ago to the day she awoke from a month-long coma following a difficult double lung transplant.

At age 20, Tillemann-Dick was just starting her singing career in Europe when she was diagnosed with pulmonary hypertension, a condition in which the arteries supplying the lungs have unusually high blood pressure, putting patients at risk for heart failure.

"I saw a specialist and she told me that I had to stop singing, that those high notes were going to kill me," the soprano said at Tuesday's conference.  "She was emphatic: I was singing my own obituary."

But Tillemann-Dick did not give up singing, and even when her condition worsened and she had to carry around a four-pound apparatus that delivered medicine to her continually just to be able to function, she managed to perform all over the globe.

"She just wasn't going to let [her condition] rule her life," the singer's mother, Annette Tillemann-Dick says.

After her father died suddenly however, her condition worsened, as did her voice.  When the singer had right heart failure due to her worsening symptoms, she finally gave in to her doctor's advice and agreed to a double-lung transplant. 

Copyright 2010 ABC News Radio







ABC News Radio