Category Archives: Lung

Young SJ transplant patient defies the odds – Cherry Hill Courier Post

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In 2012, while 3-year-old Riley O’Brien was on the waiting list for a heart/lung transplant, a Courier-Post videographer spent a day documenting his experiences. Courier-Post

MAGNOLIA – Four years after receiving a new heart and lungs from a child donor, 8-year-old Riley O’Brien is facing a whole different set of challenges.

Despite a round of invasive tests impending this week, the nine medications he takes daily, and the worries of contracting a life-threatening infection, Riley had a more pressing aggravation during a recent visit.

A pile of homework for a possible snow day.

The second-grader groaned about the task, appearing like any other kid beleaguered by the demands of school. Then he set to work mugging for a photojournalist’s camera, twisting his grin sideways and swinging his arms as if to run.

“I’m Flash,” he explained, before rearranging his pose.

In truth, his mother said, he’s a miracle child.

Riley was born with heterotaxy syndrome, a rare birth defect affecting the heart and other organs. Before his birth, Carol O’Brien was told her little boy had a 50 percent chance of surviving to see his fifth birthday, according to a blog she’s kept since midway through her pregnancy. At nine months old, he had abdominal surgery and a feeding tube inserted. At 19 months old, he needed supplemental oxygen around the clock, and was put on the transplant waiting list for a new heart and lungs.

By the time his family was called with the news that donor organs had been found, Riley had undergone 26 heart catheterizations to open the scarred blood vessels leading to his lungs. His fingers were consistently blue because he couldn’t get enough oxygen into his blood.

On March 6, 2013, about a month before Riley turned 4, doctors at Children’s Hospital of Philadelphia replaced Riley’s failing heart and lungs with a new set. There were just 23 similar operations that year in the United States, according to the U.S. Organ Transplant and Procurement Network, but pediatric cases are even more rare.

Since 2013, there have been only five heart-lung transplants in children under age 10. CHOP boasts one of the largest heart-lung transplant programs in the world, and has handled more than 25 such operations among children and young adults since its inception.

The survival curve is not great for children with heart-lung transplants, explained Karen McCandless, a nurse-practitioner in CHOP’s heart transplant unit. But some patients have survived for more than 15 years.

“We really don’t know right now where Riley’s course will go,” McCandless said. “He’s doing great right now. He looks amazing.”

When a patient undergoes an organ transplant, McCandless said, “you’re trading one disease for another.”

Riley’s immune system is suppressed to keep his body from rejecting the donor organs. The possibility of infection, long-term side effects and an increased risk of cancer from medication will always be a concern. But he’s come a long way, said McCandless, who has followed Riley’s care since he was a baby. She marveled at his ability to attend school and live from day to day with few restrictions on activity.

That’s the goal, McCandless explained — to enable kids to live as normally as possible, for as long as possible.

“Just to watch all of the changes he’s gone through and see him explode with speech and just being able to do so many different things — it’s quite remarkable,” McCandless said. “We hope he’ll continue to stay this healthy for many more years.”

His medical issues meant he wasn’t able to eat by mouth for years. This year, he eats his school lunch with a different classmate each day, while an aide watches to make sure he chews and swallows his food properly. After watching older boys swallow pills at a summer camp for children with heart issues, Riley learned to do the same, impressing his medical team.

In many ways, he’s a typical kid who loves superheroes, trains and professional wrestling, a passion he shares with his dad, Darren O’Brien. This year, with his parents girding themselves against the possibility of a cold or flu, he started attending school for the first time. His favorite activities at school are recess and gym, where he loves to run, skip and hop on one foot. He won his school’s “Student of the Month” Award in December.

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When he caught a virus last month and spent a few days in the hospital, he worried about missing school, while his parents worried about his recovery.

“Any time he’s sick with an infection, it raises his risk of rejection,” Carol O’Brien noted. “If it does, we’ll treat it and hope we just go to the next day.”

He talks at a breakneck speed — his mother has to remind him to slow down and speak clearly. He hugs his classmates goodbye at the end of each school day, a habit that has caused some consternation, but mostly understanding.

“We did all of this so he could live,” O’Brien said. “We have to just hope for the best.”

Kim Mulford: (856) 486-2448; kmulford@gannettnj.com

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St. Louis doctors perform rare transplant on teen – Washington Times

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ST. LOUIS (AP) – Hospitals in Chicago and Boston told the family of Spencer Kolman that they didn’t have the expertise for the rare transplant surgery, and that transplanting his lungs would be too risky.

But the teen was living in his bedroom, emptying oxygen tanks like they were cartons of milk.

“We tried to figure out what is next,” said his dad Ken Kolman, 46. “What is the best way to help Spencer?”

Next on their short list of possibilities was St. Louis Children’s Hospital.

It was risky, surgeons here agreed. Spencer was very sick. Transplanting both a heart and lungs could be a dangerous waiting game.

But as it turned out, coming to St. Louis saved Spencer. The 15-year-old plans to leave Friday and return home to the Chicago area, three months after getting a new heart and lungs – the only pediatric heart-lung transplant in the U.S. last year.

“It was one stroke of luck, of a miracle and of luck after the next,” his dad said.

Luck and grit. Spencer fought a rare form of cancer as a 1-year-old. He lost his mom to breast cancer. As a teen, he has had to fight for his life again.

Yet, he’s thankful – just to play the trumpet again, return to Boy Scouts and maybe even the hockey rink.

The St. Louis Post-Dispatch (http://bit.ly/2m2Rvon ) reports his surgeon Dr. Pirooz Eghtesady, with 200 heart transplants and 20 lung transplants under his belt, said his role as a “glorified plumber” was the easy part.

Spencer himself is a pretty darn resilient kid . This kid, in his relatively short life span, has experienced more hardships than many of us in our lifetime,” Eghtesady said. “There’s no question in my mind that he has to be special and have special power to withstand everything.”

Kolman said his son’s courage and optimism got him through heartbreaking news and difficult decisions.

“We came to the conclusion that if he died in the operating room trying, at least he tried, but he didn’t want to go on living like this,” Kolman said. “So we said, ‘All in.’”

Kolman cared for Spencer when he was 16 months old and underwent chemotherapy, surgery and radiation for rhabdomyosarcoma, when cancer cells form in muscle tissue. Spencer’s mother had just been diagnosed with breast cancer.

The couple divorced. Later, her breast cancer returned. She fought for six years, enjoying time with her family as much she could, Kolman said. Spencer was 8 years old when she died.

Four years later, when Spencer was in the sixth grade, he started experiencing shortness of breath. He collapsed during a hockey practice. Tests revealed scarring in his lungs, a side effect of his cancer treatment, they were told. The scarring would slowly progress.

By the eighth grade, Spencer had to switch from the trumpet to the drums. He needed oxygen through tubes in his nose at night. By his freshman year, he needed a wheelchair to get around. He needed oxygen all the time.

Last January, the University of Chicago Medical Center began planning for a lung transplant. But doctors discovered Spencer’s heart was also damaged from working so hard to make up for his lungs. The hospital gave Kolman a short list of hospitals with expertise in rare pediatric heart-lung transplants.

With relatives in Boston, the family first approached Boston Children’s Hospital. Doctors there thought Spencer needed only a lung transplant. But his lungs had become so scarred and attached to the chest wall, they believed removing them would cause him to bleed to death.

Kolman was unprepared for such a hopeless prognosis. “I was devastated,” he said. “You figure you go to a top hospital in the country that it would be a doable situation.”

He had to keep trying. He and his wife brought Spencer to St. Louis to be evaluated around the first of September. Spencer needed both a heart and lung transplant, doctors here agreed.

Kolman left St. Louis thinking the worst. He had read about the difficulty of getting both organs, he said.

Pediatric heart-lung transplants are rare because children rarely need both. A patient must be at the top of both lists, for a heart and lung, because the allocation system favors the probability of saving two people instead of one, doctors explained. Many needing both have other complications to consider.

Then came the surprising call from the surgeon. He would place Spencer on the transplant waiting list and do the surgery. They had to move to St. Louis and be ready. That’s when Kolman and Spencer decided – all in.

“We were talking about just trying to give him the best quality of life,” Kolman said. “But that just wasn’t enough. As a parent, I wouldn’t be able to live with myself.”

Spencer’s stepmother was going to come to St. Louis so Kolman could work and stay with Spencer’s older brother and younger sister. But Kolman lost his job, which he says was fate stepping in.

They arrived Nov. 10, lucky to have a friend who let them stay in an apartment he owned in south St. Louis. Spencer was so sick, though, he immediately went into intensive care.

“The docs were freaked out,” Kolman said. “They couldn’t believe he was surviving like this, that he was breathing like this, that his heart was working like this.”

Spencer’s test results showed he needed a ventilator, and that he could go into cardiac arrest any minute. But the breathing machine could also overwhelm his weak organs, and a patient can’t survive a lengthy wait on the machine.

The decisions were most difficult for his health care team, because Spencer was talking, walking around and playing with Legos.

“Sometimes you just have to stop focusing on the numbers and focus on the whole patient,” said his lung doctor Stuart Sweet, medical director of the pediatric lung transplant program at Washington University School of Medicine and Children’s.

Spencer maintained his quiet calm. He knew the organs might not come in time, he said, “but just having my dad there and stuff really helped.”

On the afternoon of Nov. 29, Kolman was shopping when he got a call saying a heart and lungs were on the way. He rushed to the hospital to be the one to tell his son the news. Nurses jumped up and down in the hallway.

“From January of that year until now, everything that had transpired was just to get him to the operating table,” Kolman said. “That was anything and everything we were focused on, just to get him to that point, just to give him that chance.”

Spencer went into surgery that night. The transplant took place in the early morning hours.

“I kissed him, and said goodbye. I was a total wreck,” Kolman said, but Spencer was brave. “He looked at me like, ‘I got you,’ like, ‘What are you crying for?’”

Spencer has showed no signs of rejecting his new organs. He can walk on a treadmill for a mile. He enjoyed the Christmas lights around Candy Cane Lane, went to two Blues games and found his favorite restaurant in St. Louis – Pueblo Solis.

“Just to see him breathe like a normal person breathes,” said his dad. “I just keep having to pinch myself all the time. It’s mind-blowing.”

The family is enjoying every day. Lungs have the highest rate of rejection compared to other organs. Five years after surgery, half will have failed. Researchers are trying to figure out why.

Spencer said he can’t wait to get back home with his siblings and friends. He plans to take drivers education in the summer and return to classes in the fall. He’s been able to keep up with his classes, even pre-calculus and honors chemistry, online.

Spencer knows nothing about the donor of his new heart and lungs; only that the person had to be close to the same size as he is. He got to send the family a letter.

“I am a Boy Scout, and now I will be able to earn my Eagle Scout award,” he wrote. “I play the trumpet in the school band and had to stop as my condition became worse, but you have allowed me to be able to play the trumpet again. I also played hockey and hope to return to the ice soon as well . thank you for such a selfless gift.”


Information from: St. Louis Post-Dispatch, http://www.stltoday.com

Copyright © 2017 The Washington Times, LLC.

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Researcher examines scarring process in hope of preventing chronic lung transplant rejection – News-Medical.net

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For patients affected by lung diseases such as pulmonary fibrosis, chronic obstructive pulmonary disease, cystic fibrosis and others, cures for their diseases are incredibly rare, if not nonexistent.

“We really have no option, but to offer them a lung transplantation,” says Vibha Lama, M.D., a professor of internal medicine and associate chief of basic and translational research at Michigan Medicine’s Division of Pulmonary and Critical Care Medicine.

“Survival of lung transplantation is worse than all other solid organ transplants,” she says. “The five-year survival rate is only 50 percent, and the 10-year survival rate is as low as 20 percent. For me to tell my patient that this second chance at life comes with this critical limitation is incredibly hard.”

Lama explains that in many lung transplant patients, the body will chronically reject the new lung.

“Small airways of the transplanted lung, or graft, begin scarring and slowly become completely scarred and close up. This process is called bronchiolitis obliterans syndrome (BOS),” she says. “The patient will begin to have shortness of breath again, like they did before the transplant, and this scarring can lead to graft problems and ultimately death in some patients. Right now we have nothing to prevent or stop this scarring process once it begins.”

Lama is the senior author on a new paper, published in the Journal of Clinical Investigation, which examined the scarring process in transplanted lungs in hopes of identifying novel therapies to stop scarring before it starts.

Analyzing cells and their environment

“This study is unique because it actually started from our patients,” Lama says. “Samples were collected from lung transplant patients by going into the lung with a small scope that helps us to insert a liquid into the lung and draw it back, allowing us to study the internal environment of the transplanted organ. This procedure, called bronchoalveolar lavage, is routinely done to rule out acute rejection or infection.”

In 2007, in a study published in JCI, Lama’s team demonstrated that they could isolate novel mesenchymal stem cells from this bronchoalveolar lavage.

In this new study, Lama and team focused on cells harvested from lung transplant patients who had BOS and those who did not.

“We started investigating cells in patients who have BOS and found that even after being removed from the fibrotic graft, these cells stayed activated, making more collagen, which explained their ability to promote relentless scarring,” Lama says.

As the team dug into what keeps these cells activated, they discovered a chain of upstream signals starting with autotaxin, an enzyme which acts on the cell membrane to generate lysophosphatidic acid. This potent lipid mediator was signaling the cells to produce more collagen, as well as indirectly increased autotaxin levels.

“We found that these cells could regulate themselves by increased autotaxin production, which was being further enhanced by an autocrine loop,” Lama says. “What’s so fascinating about this is that it means the cell no longer needs an inflammatory environment, or stimulation in its environment, to produce the collagen. That’s extremely novel because we have never thought of these cells as essentially cancer cell-like in nature, but they are regulating their own behavior like a cancer cell does.”

She adds, “The dysregulated behavior of these cells essentially makes them become autonomous in behavior and helps us further understand why we can’t stop the scarring process just by changing the environment around the cell, which does not make a difference. They have already begun not listening to anything around them.”

Lama explains that this finding led the team to investigate new therapies.

“If we interrupt this pathway, we could potentially stop further development of lung scarring and save the graft,” she says.

Therapeutic treatments

Building on these findings, Lama and team examined two new therapeutic treatments for their potential in interrupting the pathway.

One treatment, PF-8380, targeted the enzyme, while the other treatment, AM095, targeted the receptor for lysophosphatidic acid.

Using a novel mouse lung transplant model of chronic rejection their laboratory developed, they were able to test if the drugs would decrease the scarring process.

Lama and team found that the mouse models treated with these orally administered drugs were protected from the scarring process of chronic rejection with significantly less fibrosis noted in their transplanted lungs.

The team hopes that these findings will lay the foundation for future clinical trials.

“Drugs targeting this pathway, such as autotaxin inhibitors and LPA1 receptor antagonists, have already been developed and are in clinical trials for other fibrotic conditions of the lung, such as idiopathic pulmonary fibrosis,” Lama explains. “Now we hope that we can consider similar therapies in BOS, a disease where we have no therapeutic options.”

Lama also explains that these findings should encourage the transplant community in general to consider anti-fibrotic treatments in patients with chronically rejected lungs, instead of just immune suppressive drugs that were given in the past.

“These findings suggest that understanding the pathways that activate a mesenchymal cell and targeting them is crucial if we want to contain the progression of BOS,” Lama says. “We hope this work, which started from the bedside when we examined the lavage fluid from our lung transplant recipients, will be able to be translated back from the bench to the bedside to make an impact on the lives of our patients.”

‘He was on death’s door’: US teen, 15, who survived cancer makes incredible recovery after rare and risky heart-lung … – Daily Mail

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  • Spencer Kolman, 15, underwent a rare and risky heart-lung transplant in 2016
  • The Chicago boy was diagnosed with a disease that causes scarring in the lungs 
  • Doctors said if Spencer didn’t receive a transplant, he would die within a year
  • Only five hospitals perform the surgery but many thought he was too high risk
  • The surgery was performed on November 29 and he is said to be recovering well

Mary Kekatos For Dailymail.com

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A 15-year-old boy is making an astonishing recovery after being the only person in America to undergo a heart-lung transplant last year.

Spencer Kolman, from Chicago, Illinois, was ‘at death’s door’, according to his doctors, after waiting three years for a donor. 

He was diagnosed with pulmonary fibrosis, a disease which scars the lungs, causing the heart and lungs to fail, in 2013. Without a transplant, it can be fatal. 

It was latest blow for Spencer, who survived cancer as a baby, then suffered years of misdiagnoses as he struggled to breathe. 

Finally diagnosed, he was put on the years-long wait list. 

Due to a shortage of donors, heart-lung transplants – replacing both organ in a single operation – are rare.

Only about one hundred such transplants are performed each year in the US. And only five hospitals perform the operation on children – none of them in Chicago.

By 2016, doctors told Spencer he had a year to live. 

Spencer Kolman, 15, received a rare heart-lung transplant in November 2016. Pictured attending his high school's Valentine's Day dance, nine months before the transplant
Spencer Kolman, 15, received a rare heart-lung transplant in November 2016. Pictured attending his high school's Valentine's Day dance, nine months before the transplant

Spencer was diagnosed with pulmonary fibrosis, which causes scarring in the lungs. He's pictured here on the day of his transplant in November 2016
Spencer was diagnosed with pulmonary fibrosis, which causes scarring in the lungs. He's pictured here on the day of his transplant in November 2016

Tragic: Spencer Kolman, 15, received a rare heart-lung transplant after being diagnosed with pulmonary fibrosis. Pictured in February 2016, attending his high school’s Valentine’s Day dance (left) and on the day of his transplant in November 2016 (right)

Some patients make their way through a diagnostic odyssey being treated for the wrong disease until their real problems are detected. For others, they know what’s wrong, but they cannot find a doctor who will treat them.

For the Kolman family, it was both.

Spencer had been suffering from shortness of breath throughout his childhood. He needed a mobility scooter to get around his school – and could only attend for half a day because he would become very exhausted.

Then, during an ice hockey game – when he was 11 years old – he collapsed. The diagnosis was originally asthma.

Spencer was given an inhaler, but it didn’t make much of a difference.

The Kolman family went to the University of Chicago where doctors believed it was walking pneumonia. This time, he was given antibiotics.

‘That didn’t really do anything either,’ Spencer told CNN. More tests were done and ‘eventually, they came to the conclusion that it was pulmonary fibrosis.’

Pulmonary fibrosis is a disease marked by scarring in the lungs. Tissue deep in the lungs becomes thick, stiff and scarred. As the lung tissue becomes scarred, it interferes with a person’s ability to breathe. 

While in many cases the cause is unknown, it was clear for Spencer.

Long road: There are few hospitals in the US that perform pediatric heart-lung transplants.  Spencer was turned down by most because his lung has almost become attached to his chest and the surgery was 'too risky'. Pictured on Halloween 2016, one month before his transplant
Long road: There are few hospitals in the US that perform pediatric heart-lung transplants.  Spencer was turned down by most because his lung has almost become attached to his chest and the surgery was 'too risky'. Pictured on Halloween 2016, one month before his transplant

Long road: There are few hospitals in the US that perform pediatric heart-lung transplants.  Spencer was turned down by most because his lung has almost become attached to his chest and the surgery was ‘too risky’. Pictured on Halloween 2016, one month before his transplant

In 2002, when he was just 16 months old, Spencer was diagnosed with a form of cancer known as rhabdomyosarcoma. These cancers grow in connective tissues, such as muscles, fat, bones or the linings of joints.

Spencer’s cancer treatment lasted a year and he had to undergo chemotherapy, surgery and radiation. 

Doctors connected the dots from his chemotherapy as a baby to the scar tissue in his lungs as a teen. They suggested that his failing heart and two lungs required a transplant.

There are only five hospitals in the US that perform pediatric heart-lung transplants, but none of them were in the Kolmans’ hometown of Chicago.

Most hospitals refused to perform the surgery because the lining of Spencer’s lungs had almost become attached to his chest wall due to inflammation and scarring.

They worried Spencer might die on the operating table. The surgery was considered ‘too much of a risk’.

Then the family arrived at St Louis Children’s Hospital. 

Dr Stuart Sweet, a pediatric pulmonologist and medical director of St Louis Children’s Pediatric Lung Transplant Program told CNN that Spencer was an unusual case in that ‘by the time he got to us, he was a little sicker than we would like.’

He said: ‘Although we consider other peoples’ opinions when we evaluate patients, we evaluate patients on our own set of criteria.

‘The concerns raised elsewhere did not really apply to our expertise or our approach, so it really was not a difficult decision for us medically.’

Spencer had shortness of breath for a while and had to use a motor scooter to get around school. Pictured in February 2016
Spencer had shortness of breath for a while and had to use a motor scooter to get around school. Pictured in February 2016

By the day of the transplant, Spencer was 'at death's door'. Pictured in April 2016
By the day of the transplant, Spencer was 'at death's door'. Pictured in April 2016

Hope: Spencer had shortness of breath for a while and had to use a motor scooter to get around school. By the day of the transplant, Spencer was ‘at death’s door’. Pictured in February 2016 (left) and April 2016 (right) before being admitted to the hospital

Dr Pirooz Eghtesady, a cardiothoracic surgeon-in-chief at St Louis Children’s Hospital, who headed the team that performed Spencer’s operation, said he didn’t fault the other institutions that turned the Kolman family away.

Unlike other hospitals, he explained that St Louis had become comfortable over time with performing this form of difficult, complicated surgery.

‘About 75 percent of the cases that we do are redo lung transplants,’ Dr Eghtesady told CNN, adding that when a transplant fails a second transplant can be done in some cases.

Recovery: Spencer's transplant was 'en bloc' in which the heart and lungs are not separated but transplanted together. He is pictured here one week later, in December 2016, attending physical therapy 
Recovery: Spencer's transplant was 'en bloc' in which the heart and lungs are not separated but transplanted together. He is pictured here one week later, in December 2016, attending physical therapy 

Recovery: Spencer’s transplant was ‘en bloc’ in which the heart and lungs are not separated but transplanted together. He is pictured here one week later, in December 2016, attending physical therapy 

WHAT IS PULMONARY FIBROSIS?

Pulmonary fibrosis is a disease marked by scarring in the lungs. Tissue deep in the lungs becomes thick, stiff and scarred. As the lung tissue becomes scarred, it interferes with a person’s ability to breathe.

In some cases, the cause of pulmonary fibrosis can be found but in most cases there is no known cause.

About 140,000 Americans have been diagnosed with pulmonary fibrosis.

It generally affects those between ages 50 and 75. 

Signs and symptoms:

  • Shortness of breath, particularly during exercise
  • Dry, hacking cough
  • Fast, shallow breathing
  • Gradual unintended weight loss
  • Tiredness
  • Aching joints and muscles 

While most causes are unknown, some include:

  • Cigarette smoking
  • Certain viral infections
  • The use of certain medicines
  • Exposure to environmental pollutants 
  • Gastroesophageal reflux disease (GERD) –  a condition in which acid from your stomach backs up into your throat

There is no cure for pulmonary fibrosis. Treatment options include medicine, oxygen therapy, pulmonary rehabilitation and a lung transplant.

Current treatments, including oxygen therapy, are aimed at slowing the course of the disease, relieving symptoms and helping you stay active and healthy. Treatment cannot reverse lung scarring that has already occurred.

Source: American Lung Association

The hospital’s plan for Spencer was to treat him as an outpatient while placing him on the wait list for an organ. That way, they could bring him in for the surgery once donor organs became available.

The expectation was that his disease would progress slowly, but it became worse rather quickly.

Hiss father Ken said: ‘We came [to St. Louis] on a Thursday, and I called Friday morning to talk to someone on the transplant team to assess him,’ he said. 

Spencer was on 15 liters of oxygen per minute – ‘a crazy amount of tanks’.

‘Some of the doctors who had never seen him before saw him, and they were totally blown away and terrified that he was going to pass away within 24 hours,’ Ken said. 

‘They were surprised that he could survive breathing the way he had been.

‘I was told if he was a normal healthy person, he’d be dead in 30 minutes or less.’

That Friday, November 11, Spencer entered the hospital and by Monday, the team had put him on the wait list. By the end of the week, though, his condition had become grave, and the team was not sure he would make it.

‘In Spencer’s case, honestly, he was at death’s door,’ Dr Eghstedy said. 

According to Dr Sweet, Spencer was ‘really sitting on an edge,’ but waiting for both organs, heart and lungs, can take time.

Doctors worried over the difficulty to match a heart and lung or other multiple organ pairs as well as the anti-rejection medications Spencer would have to take for the rest of his life.

Although the team originally planned to transplant only the one set of lungs, long enough to keep Spencer alive, a call came on November 29 that a donor had been found.

Hope: Spencer will continue to be monitored at the hospital for signs of infection and to evaluate how well his lungs are functioning for at least one year. Pictured in January 2017
Hope: Spencer will continue to be monitored at the hospital for signs of infection and to evaluate how well his lungs are functioning for at least one year. Pictured in January 2017

Hope: Spencer will continue to be monitored at the hospital for signs of infection and to evaluate how well his lungs are functioning for at least one year. Pictured in January 2017

Happy: 'After the operation, when I was able to start walking around, it almost felt completely different because it was so much easier,' Spencer said. Pictured in February 2017
Happy: 'After the operation, when I was able to start walking around, it almost felt completely different because it was so much easier,' Spencer said. Pictured in February 2017

Happy: ‘After the operation, when I was able to start walking around, it almost felt completely different because it was so much easier,’ Spencer said. Pictured in February 2017

According to Dr Eghtesady, Spencer’s operation was an ‘en bloc’ transplant, in which the heart and lungs are not separated but transplanted together. Often these surgeries can take up to 12 hours. 

Doctors have made the point that Spencer’s procedure took less than half the time, suggesting that it went well.

Though it is rare, a total of 4,614 heart-lung transplants have occurred worldwide between 1985 and June 2015 and, of these, 712 were pediatric surgeries, according to the International Society for Heart & Lung Transplantation.

‘I think Spencer’s quality of life is going to improve substantially,’ Dr Eghtesady said.  

‘He can now have a life. The future really depends on how he does and how his body accepts or rejects the graft.’ 

Spencer will make weekly trips to the hospital for at least a year so doctors can monitor him for signs of infection and to evaluate how well his lungs are functioning.

According to his father Ken, his progress has been ‘phenomenal.’ Before the surgery, Spencer was unable to walk up a flight of stairs, ‘even on oxygen, I would have to carry him up and down’.

‘The other day, he just walked a mile on the treadmill,’ Ken said. 

‘I feel the curve coming where he’s going to like pass me up and I’m going to have to huff and puff and try and keep up with him.’

Meanwhile, Spencer is excited to no longer need equipment.

‘After the operation, when I was able to start walking around, it almost felt completely different because it was so much easier,’ Spencer said. 

‘I am amazed.’ 

As his father sees it: ‘Spencer is not a fighter but a gladiator, thrown into this not by choice, but by necessity for survival.’  

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Lung transplant patient who waited two years for donor says ‘I was lucky, but many of my friends died’ – Mirror.co.uk

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A woman was able to celebrate Christmas after a two-year wait for a double lung transplant .

Kim Hodge had spent all that time needing an oxygen tank to breathe during the day and a ventilator at night.

And even when her long wait for new lungs finally came to an end last month she was almost too sick to be transplanted.

It was touch and go whether the complex and lengthy operation should go ahead because it was feared she might not survive surgery at London’s Harefield Hospital.

But she beat the odds, has celebrated Christmas with a new pair of lungs, and is now looking forward to bringing in the New Year and 2017.

Now she is backing the Daily Mirror’s Change the Law for Life campaign to roll out an Opt Out organ donor system across the UK in a bid to save more lives.

She said: “I do not want people who need a transplant to go through my experience. I was lucky in the end – just. But I know of lots of people needing new lungs who have died, close friends.

“At the moment getting a transplant is a lottery. My surgeon could very easily have decided to transplant the lungs I got into another patient who had a better chance of survival.

“Presumed consent should be the law. But what we need is for people to opt in now and not leave it chance. If you want your organs used then let your loved ones know, then there can be no doubt about your intentions.”

Kim poses for picture to highlight plight of those awaiting donors
Kim, 48, who spent Christmas at home in Pontardawe, South Wales, after spending weeks in hospital recovering, added: “Donor lungs are precious and they could have been lost if I had died in the operating theatre.

“It was touch and go, I understand, but I had a fantastic senior surgeon who decided I deserved a chance.

“I can’t thank him enough for deciding to give it a go. I had absolutely no idea what was happening as I’d been at Harefield unconscious for several days being kept alive on a machine that kept my blood oxygenated because my lungs were too poorly.”

She had struggled with serious breathing complications for years and says it’s a miracle she’s survived so long.

She is now backing the Mirror’s campaign for an Opt out system
Kim recalled: “I’d been waiting longer than anyone else I know for a transplant. Everywhere I went a tank of oxygen went with me.

“I didn’t get out much and in the home I had a network of pipes allowing me to walk around the house hooked up to oxygen.

“When I went to bed at night I was on a ventilator which helped push air into my lungs. It was a very precarious existence.

“I was constantly at risk of a serious infection that could have killed me and all the time my lungs were deteriorating.

“My lung function started to go rapidly downhill in September and then it became a race against time to get me a transplant.

Kim before her transplant
“By the time they transplanted me my lung function was below 14 per cent and I had a high level of infection present.

“You only get a transplant when your lungs are nearing the end because there are so few organs available but a lot of people – when they get the call – pack their bag and go into hospital. I had absolutely no idea what was happening.

“I’d been out of it on ECMO, which is like a heart bypass machine which was oxygenating my blood because my lungs could no longer do that job.

“Now I’m on the slow road back to a normal life. I’m still fragile, but the transplant has taken well. However, I have to steer clear of public places for a while until I get my strength back because of the risk of infection.

“People bring in shopping for me so I don’t have to go into shops yet. But I have been out walking with my dogs – without having to take a mask and a tank of oxygen.”

She is an ambassador for charity Live Life Give Life
Kim, an ambassador for the transplant charity Live Life Give Life, doesn’t know if her donor came from her home country of Wales where people are presumed donors unless they specifically opt out.

“It would be great if my donor had been Welsh because the policy of opting out is one way that we can get more organs so that people like me don’t have to wait so long.

“I’m conscious that I was lucky – in the end – but there are many people who need new lungs who aren’t so lucky.”

She says she knows she was one of the lucky ones
So far the Welsh Government is the only UK Government to operate an opt policy for organ donation.

On 1 December 2015, Wales introduced a law deeming all adults to have consented to donate their organs unless they have opted out. This groundbreaking change is expected to increase the number of donors by 25%.

The Daily Mirror’s Change the Law for Life campaign is calling on Health Secretary Jeremy Hunt to extend the opt-out system to the rest of the UK.

  • Join the organ donation register at organdonation.nhs.uk and sign our petition at mirror.co.uk/donor.

Morgan Yoney recovering after double-lung transplant – Observer-Reporter

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Morgan Yoney

For the first time since her double-lung transplant Thursday, doctors allowed Morgan Yoney to wake up a little Monday.

“She’s aware that she’s had the lung transplant and she is very happy,” Morgan’s mother, Tammy Yoney, said Monday afternoon. “She told us last night that she can breathe.”

The 22-year-old Spraggs woman had waited more than two years for her second double-lung transplant, which she finally received last week at UPMC-Presbyterian hospital in Pittsburgh.

Tammy said the doctors have tried to keep Morgan sedated because her chest is still open.

“She needs to rest,” Tammy said. “She’s determined to sit up, but her chest is still open. She’s not out of the woods yet. She’s still listed as critical condition.”

The doctors had to keep her chest open because she’s still on extracorporeal membrane oxygenation, a machine that takes over the work of the lungs. Tammy said doctors are planning to take her off that machine today and finish the surgery.

“When that happens, they’ll know a little better as to how the lungs are working,” Tammy said. “That’s when we should really start to see progress.”

Tammy said that Morgan’s in some pain, but looks great.

She said that Morgan keeps asking to hold her two-month-old niece Jillian Morgan Dickerson.

“She’s doing as good as can be expected,” Tammy said. “Her doctors have said that she’s ahead of the game.”

At 9 months old, Morgan was diagnosed with cystic fibrosis, a genetic disorder in which the lungs and digestive system are clogged with mucus, often resulting in the need for liver and lung transplants. She had both in 2010, when she was 15, but three years later, discovered her body was rejecting the lungs.

The two-year wait for lungs has taken a toll on Morgan’s kidneys, and two weeks ago, she was admitted to the intensive care unit at UPMC Presby because her kidneys were functioning below 30 percent. Doctors were considering removing her name from the waiting list for the lung transplant, but instead, Morgan got the call that they found lungs from a donor in Chicago.

The operation took nearly 12 hours Thursday, and thousands of people, from across Southwestern Pennsylvania, swarmed the Morgan’s Army Facebook page to offer her words of love and encouragement.

Tammy said Morgan’s even seen support from people in other countries.

“One person said, ‘I have many celebrities I want to meet, but you’re number one,’” Tammy said. “The best part for me is when people say, ‘I was never an organ donor until I read your story.’ That’s the most important thing—being an organ donor.”

Morgan’s also seen support from the community in her blanket drive for hospital patients.

Last Christmas, Morgan started a campaign to donate blankets to UPMC Presby patients and 147 people got blankets on Christmas that year.

This year, thanks to help from Dollar General and a local drivers club called “Wicked Jeeps WPA,” more than 1,600 blankets have been donated to Morgan’s campaign.

“We didn’t expect the drive to hit that many,” Tammy said. “We were just hoping to be able to cover Presby and we did that probably 10 times over. It’s absolutely incredible.”

Tammy said the extra blankets will go to all the area hospitals, cancer centers and nursing homes.

“I can’t wait to tell Morgan because she’s going to be so excited,” Tammy said. “We got what we wanted for Christmas, so it’s just great that they took her dream and just ran with it.”

Massena Make-A-Wish teen who had lung transplant surprised with trip to Hawaii – Syracuse.com

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SYRACUSE, N.Y. — Shoppers passed through the department store wearing bemused expressions as dancers with pom-poms lined up, singers practiced Christmas carols and Otto the Orange pleaded for high-fives.

A few more minutes ticked by before Stephanie McKeel, 19, of Massena, walked up to the entrance of the Macy’s at Destiny USA Friday evening in Syracuse.

McKeel suffers from cystic fibrosis, a life-threatening disease causing mucus to build up in the lungs and digestive tract. McKeel underwent a double lung transplant in May.

She thought she was coming to serve as a Make-A-Wish ambassador for “Believe Day”. Each year as part of its Believe campaign Macy’s donates $1 to Make-A-Wish for every letter written to Santa Claus. The nonprofit grants wishes to children with life-threatening medical conditions.

McKeel, a Syracuse University basketball fan, seemed dazed by the presence of the Syracuse Dance Team, the university’s mascot and dozens of smiling people.

She was asked and penned a letter to Santa Claus, dropping it in the Believe mailbox nearby. Then she got the news: it was her wish — a family trip to Hawaii — that was being granted.

Carolers sang. Otto the Orange jumped up and down. Dozens of people cheered. McKeel appeared a bit stunned, but a smile slowly crept across her face.

“I had no idea,” McKeel said, adding that she realized something was up when she saw Otto the Orange. “It’s pretty awesome. It was really nice of them.”

Benny and Jamie Fairchild, of Waddington, volunteer with Make-A-Wish in St. Lawrence County. They delivered the news about McKeel’s wish being granted.

“Sometimes it’s quick, but in Stephanie’s case it’s taken a while,” Jamie Fairchild said.

McKeel was referred to Make-A-Wish last year, but everything was put on hold due to health issues until November. She and her family are hoping to go to Hawaii in the spring once McKeel is allowed to travel.

In the mean time, McKeel was invited to attend the Syracuse men’s and women’s basketball games Saturday at the Carrier Dome. And Macy’s representatives gave her a makeover and shopping gift cards.

McKeel said she was especially excited for the basketball games. By chance the Massena girls basketball team, on which McKeel played, is playing at halftime during the women’s game Saturday.

New lung transplant technique could save lives: study – New Vision

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Doctors typically rush to complete a transplant within about six hours of the lungs being taken from a donor, with time being of the essence because the tissue starts to break down.
Lungsinsert 703x422

A new technique could help nearly double the precious few hours surgeons have to carry out lung transplants, raising hopes for saving more lives, said a study released Friday.

Doctors typically rush to complete a transplant within about six hours of the lungs being taken from a donor, with time being of the essence because the tissue starts to break down.

But the new method, which uses a process called ex-vivo lung perfusion (EVLP), could help keep lungs outside the human body for over 12 hours without significantly harming their eventual recipient’s chances of survival.

The extra time means more transplants could be performed because organs which were previously too far away could now reach recipients in time, said the study published in The Lancet Respiratory Medicine journal.

Getting the organs to recipients is the difference between life and death for people on wait lists, and who number about 1,700 in the US and Canada alone.

The process starts with the lungs being taken from a donor and then put on ice immediately. After being moved to the hospital where they are needed, the organs undergo EVLP.

This consists of warming the lungs and continuously pumping a liquid full of oxygen, nutrients and proteins through them, at which point the “paradigm shifts from slowing death to preserving life,” the study says.

If the lungs are simply cooled, standard practice calls for the transplant to happen within six to eight hours of being outside the donor’s body. But with EVLP, which takes at least four hours, the deadline can be pushed out to over 12 hours.

“At a time when there is a critical shortage of lungs available… combining cold preservation and EVLP will hopefully make a lot more donor lungs available for successful transplantation,” wrote lead author Marcelo Cypel, a surgeon at Toronto General Hospital.

The study focused on 906 adults who got lung transplants at Toronto General from 2006-2015, comparing those whose organs did and did not undergo EVLP.

The authors found people who got organs given EVLP and kept outside the human body for more than 12 hours spent a similar amount of time in the hospital as those who did not.

Also, both groups of patients had similar levels of life-threatening complications and survival rates one year after surgery.

While the researchers said the results suggest EVLP provides “additional benefit” over just icing down the organs, the “maximum safe preservation time for human lung transplantation remains unknown.”

U-M researchers successfully transplant lab-grown mini lungs into immunosuppressed mice – News-Medical.net

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Researchers at the University of Michigan have transplanted lab-grown mini lungs into immunosuppressed mice where the structures were able to survive, grow and mature.

“In many ways, the transplanted mini lungs were indistinguishable from human adult tissue,” says senior study author Jason Spence, Ph.D., associate professor in the Department of Internal Medicine and the Department of Cell and Developmental Biology at the U-M Medical School.

The findings were published in eLife and described by authors as a potential new tool to study lung disease.

Respiratory diseases account for nearly 1 in 5 deaths worldwide, and lung cancer survival rates remain poor despite numerous therapeutic advances during the past 30 years. The numbers highlight the need for new, physiologically relevant models for translational lung research.

Lab-grown lungs can help because they provide a human model to screen drugs, understand gene function, generate transplantable tissue and study complex human diseases, such as asthma.

Lead study author Briana Dye, a graduate student in the U-M Department of Cell and Developmental Biology, used numerous signaling pathways involved with cell growth and organ formation to coax stem cells — the body’s master cells — to make the miniature lungs.

The researchers’ previous study showed mini lungs grown in a dish consisted of structures that exemplified both the airways that move air in and out of the body, known as bronchi, and the small lung sacs called alveoli, which are critical to gas exchange during breathing.

But to overcome the immature and disorganized structure, the researchers attempted to transplant the miniature lungs into mice, an approach that has been widely adopted in the stem cell field. Several initial strategies to transplant the mini lungs into mice were unsuccessful.

Working with Lonnie Shea, Ph.D., professor of biomedical engineering at the University of Michigan, the team used a biodegradable scaffold, which had been developed for transplanting tissue into animals, to achieve successful transplantation of the mini lungs into mice.

The scaffold provided a stiff structure to help the airway reach maturity.

“In just eight weeks, the resulting transplanted tissue had impressive tube-shaped airway structures similar to the adult lung airways,” says Dye.

Researchers characterized the transplanted mini lungs as well-developed tissue that possessed a highly organized epithelial layer lining the lungs.

One drawback was that the alveolar cell types did not grow in the transplants. Still, several specialized lung cell types were present, including mucus-producing cells, multiciliated cells and stem cells found in the adult lung.

Source:

University of Michigan Health System

After hiatus, Banner-UMC is doing lung transplants in Tucson – Arizona Daily Star

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The organ-transplant program at Banner-University Medical Center Tucson is regaining strength, signaled by its recent federal certification to offer adult lung transplants.
Without a local lung- transplant program, the closest place for Southern Arizonans to get a lung transplant was in Phoenix. Often local patients would end up moving their families to Phoenix temporarily as they recovered from surgery.
Now Tucson is back in the game. Officials say they are emerging from an administrative shakeup and local lung-transplant hiatus with a stronger program poised to provide an option for patients with end-stage lung disease.
There are now three places in Arizona where patients can get lung transplants. The other two are St. Joseph’s Hospital in Phoenix and the Mayo Clinic in Phoenix, which began offering lung transplants this year, but is not yet federally certified because it must first complete 10 transplants.
Once thriving
Ten years ago, Tucson was the only place in Arizona where patients could get a lung transplant. There were 17 lung transplants at the local center that year.
The Tucson program remained consistent for several years and transplanted a record 26 lung patients in 2011, federal data show. But that plunged to two in 2012.
In 2013, the center transplanted one lung patient. The following year hospital officials shuttered the once-thriving program, voluntarily relinquishing its certification with the U.S. Centers for Medicare and Medicaid Services.
That was in 2014, the year Dr. Scott D. Lick came to Tucson from the University of Texas in Galveston to become surgical director of the local heart- and lung-transplant programs. When he arrived, both programs were closed and neither had surgeons. Lick, who remembered the local transplant program as exceptionally strong when he trained here in the 1980s and ’90s, found the situation tragic.
While Lick was able to get the heart-transplant program up and running right away, the lung-transplant program remained closed for another year.
Skeptical insurers
With a team in place, Lick and hospital administrators began a new lung-transplant program in 2015, the same year the hospital was acquired by Phoenix-based Banner Health.
Officials were transparent with patients about the lack of certification.
Insurance companies directed some patients to other transplant facilities because of the Tucson program’s lack of federal approval, said Deborah Maurer, who is the statewide transplantation administrator for Banner-University Medicine.
“And we understand that,” she said.
The revived organ-transplant program in Tucson does not offer pediatric transplants for very young patients as it did in the past, and its intestine- and islet cell-transplant programs have not restarted after closing in 2013.
But the hospital is back on track with adult heart, liver, kidney, pancreas and now lung transplants, Maurer said.
Last week, the hospital performed its 100th kidney transplant for 2016, hospital officials say, putting the program on track for a record year in terms of the number of kidney transplants performed.
First patient
To get its lung-transplant program recertified with the federal government’s U.S. Centers for Medicare and Medicaid Services, Banner had to reapply, which it did after performing 10 transplants between 2015 and 2016.
The first of those transplants was on March 7, 2015, when high school junior Jennifer Morales got a new set of lungs in nine hours of surgery.
The San Luis High School student found out she needed a transplant while hospitalized in the pediatric intensive-care unit at Banner Diamond Children’s hospital with a virus in her lungs. She had so much trouble breathing that she could barely squeak out a few words of her one of her favorite Katy Perry songs, “Roar.”
Hospital officials told her about their lack of certification and that she’d be the first patient transplanted at the local hospital in more than a year. She and her family immediately liked Lick and decided to trust his team.
Morales got her name on the waiting list and then moved into Ronald McDonald House in Tucson with her mother. Her father, a trucker, remained in San Luis, near Yuma, as did her two sisters.
Based on wait times for lungs, Morales and her mother were prepared to stay at Ronald McDonald house for up to two years. But she ended up waiting just three weeks. Not all patients are that fortunate, Maurer stressed. A lot of factors are at play, including size and blood type.
Dancing future
Morales said her mother got the call that lungs were available. Since she doesn’t speak English, she repeated what she heard to her daughter.
“I translated for my mom and we just started crying,” Morales said. “Then I panicked.”
Morales, who has cystic fibrosis, was 17 at the time of her surgery — technically a pediatric patient, but the hospital was able to do her transplant as part of the adult program.
Cystic fibrosis is a genetic disease that causes severe damage to the lungs. Morales remained in Tucson for a month after her surgery and then continued to make weekly visits here throughout her senior year of high school. She also took up running, danced and joined the cheerleading squad.
Now 18, Morales recently moved to Tucson. Living locally makes it easier to get to the weekly lab tests she has with Banner’s transplant program here. She hopes to attend the University of Arizona in January and wants to be a dance major with a career goal of becoming a dance teacher.
While she was living at Ronald McDonald House, Morales had a chance to see “Sleeping Beauty” performed locally by Ballet Tucson.
It was the first time she’d seen a professional ballet production. She dreams about being able to see more ballets and being involved in the dance world.
External validation
After successfully completing Morales’ lung transplant, the local team continued with nine more over a 10-month period. That’s when it put in an application to be certified.
Federal officials did an unannounced site visit this spring and then this summer notified the hospital that it would be approved, Maurer said.
She said the standards are rigorous. After the federal visit in the spring, the Tucson program submitted a plan of correction to fix some documentation issues before getting final approval.
“It truly is external validation of a quality, patient-centered program,” she said.
While Banner-University Medical Center Phoenix is not performing lung transplants, it does offer pre- and post-lung transplant services to support Phoenix patients.
The local lung program recently performed its 16th transplant and has three patients on the waiting list for the procedure. The majority of the patients are from outside Tucson, referred from doctors within the Banner Health network, hospital officials say.
Not-for-profit Banner operates 29 acute-care hospitals in seven states and is one of the largest health systems in the U.S. Tucson is home to Banner’s only lungtransplant program.
About half of lung-transplant recipients are alive after seven years. That average means some are doing well 20 or 25 years post- transplant. Morales is optimistic about her future. One of the first things she did post-transplant was to sing “Roar” for Lick and his staff. She sang the whole song, with breath to spare.