Toddler survives 2nd second organ transplant – FOX 7 Austin

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Miles Wagner, 2, got a new kidney thanks to his mother’s emotional plea on Facebook and a selfless donor. 

Miles is a survivor. He already made it through a successful liver transplant last year.  But at 8 weeks old, he was diagnosed with a rare kidney disease that affects one person in a million. 

“A lot of gratitude to the donors that have given our little boy a new chance,”  said Ashley Wagner, Miles’ mother.

The kidney, and Miles’ future along with it, came from Liz Wolodkiewicz, his father’s high school classmate, after she saw the Facebook post from Miles’ mother asking for help. 

The transplant couldn’t have come soon enough, as Miles’ father, Ryan, was diagnosed with stage four colon cancer when Ashley was pregnant. 

“The amount of time I have because of cancer is definitely reduced. My main goal is that I wanted to see him healthy,” said Ryan Wagner.

Doctors say there is little hope Ryan will live longer than five years, but it’s more time. Time to hear the joy of Miles free from pain. 

Although the story is bittersweet, Ryan gets what every parent wants before they die. Knowing their child is going to be ok. Watch the video to see how Miles is doing now.

Doctors create ‘MAGIC algorithm’ to predict bone marrow transplant patients’ risk of dying – Science Daily

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Researchers at Mount Sinai Health System have discovered a way to predict whether blood cancer patients who received a bone marrow transplant will develop graft-versus-host disease, a common and often lethal complication, according to a study published in JCI (The Journal of Clinical Investigation) Insight.

This international study at 11 cancer centers examined blood samples from almost 1,300 bone marrow transplant patients and found that two proteins present in blood drawn a week after a transplant can predict whether a patient will develop a lethal version of graft-versus-host disease, weeks before the disease’s symptoms normally occur. Scientists at the Mount Sinai Acute GVHD International Consortium (MAGIC) created an algorithm, dubbed the “MAGIC algorithm,” that determines a patient’s risk of developing the disease by measuring concentrations of these proteins, ST2 and REG3a.

“The MAGIC algorithm gives doctors a roadmap to save many lives in the future. This simple blood test can determine which bone marrow transplant patients are at high risk for a lethal complication before it occurs,” says James L.M. Ferrara, MD, Professor of Pediatrics, Oncological Sciences and Medicine, Hematology and Medical Oncology at The Tisch Cancer Institute at the Icahn School of Medicine at Mount Sinai, and Co-director of MAGIC. “It will allow early intervention and potentially save many lives.”

Doctors at Mount Sinai are now designing clinical trials to determine whether immunotherapy drugs, normally used during the onset of graft-versus-host disease, would benefit patients as soon as this new blood test determined they would be at high risk for severe onset of the disease. Researchers believe that if patients receive the drugs once the test is administered, which is well before symptoms develop, they would be spared the full force of the disease, and fewer of them would die.

“This test will make bone marrow transplant safer and more effective for patients because it will guide adjustment of medications to protect against graft-versus-host disease,” says John Levine, MD, MS, Professor of Pediatrics and Medicine, Hematology and Medical Oncology at The Tisch Cancer Institute at the Icahn School of Medicine at Mount Sinai and Co-director of MAGIC. “If successful, the early use of the drugs would become a standard of care for bone marrow transplant patients.”

Graft-versus-host disease occurs when the bone marrow donor’s immune system sees the recipient’s body as foreign and launches an immune response, attacking the recipient’s tissue, primarily the skin, liver, and gastrointestinal tract. Between 40 and 60 percent of patients who receive bone marrow transplants later develop severe graft-versus-host disease, and about 40 percent of people who develop the disease die.

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Materials provided by The Mount Sinai Hospital / Mount Sinai School of Medicine. Note: Content may be edited for style and length.

Language barriers may interfere with access to kidney transplantation – NephrologyNews.com

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Getty Images/iStockphoto/ThinkStock
Getty Images/iStockphoto/ThinkStock
Language barriers may hinder U.S. kidney transplant candidates’ access to transplantation, according to a study appearing in an upcoming issue of the Clinical Journal of the American Society of Nephrology (CJASN).

The findings suggest that patients who primarily speak a language other than English may face disparities that keep them from completing their kidney transplant evaluation and ultimately receiving a kidney transplant.

A team led by Ed Huang, MD (Cedars-Sinai Medical Center) and Efrain Talamantes, MD (University of California Davis School of Medicine) looked to see if language barriers, or linguistic isolation, might impact access to the active transplant waiting list.

The researchers merged Organ Procurement and Transplantation Network/United Network for Organ Sharing data with 5-digit zip code socioeconomic data from the 2000 United States census. They then determined the cumulative incidence of conversion to active waitlist status, death, and delisting before conversion among 84,783 temporarily inactive adult kidney candidates from 2004-2012.

A household was determined to be linguistically isolated if all members >14 years old speak a non-English language and also speak English less than “very well.”

Across all racial/ethnic groups, progressively higher degrees of linguistic isolation were linked with a lower likelihood of transitioning from inactive to active status on the kidney transplant waiting list and with incomplete transplant evaluations.

Candidates living in a community with >20% linguistically isolated households were 29% less likely to achieve active waitlist status than those residing in a community with <1% linguistically isolated households.

The associations of linguistic isolation and other socioeconomic factors appeared to be most influential among Hispanic candidates.

“Our data suggest that language barriers may limit an individual’s ability to receive a kidney transplant. We recommend that patients with limited English proficiency who are in need of a kidney transplant use patient advocates who are English-proficient during transplant clinic visits and always use interpreters to get all of their questions answered,” said Dr. Huang. “Further, transplant centers and healthcare providers should actively address potential communication barriers when recommending testing for transplant evaluation.”

Green Bay teen receives double lung transplant – WBAY

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GREEN BAY, Wis. (WBAY) – A Green Bay teenager has received a successful double lung transplant.

Erin Culbertson had her surgery on Feb. 5 at St. Louis Children’s Hospital, according to Amy Wright, a spokesperson for the Carin’ 4 Erin fundraising team.

Action 2 News featured Erin’s story in January. She was born with Cystic Fibrosis, a condition that impacts lungs and causes respiratory issues.

“Unless Erin gets this transplant she probably only has one or two years left to live,” Karla Culbertson told Action 2 News in January. “Sometimes getting up to go sit down at the table for dinner is hard.”

Erin’s mom Karla has been posting updates on the Carin’ 4 Erin page. A blog post from Feb. 7 said things were going well for Erin after the transplant and that she was weaned off a ventilator.

Click here to read updates on Erin’s progress.

A transplant can cost up to $500,000. The Culbertson family has been getting help financially from the Children’s Organ Transplant Association (COTA), and local volunteers are raising money for the family.

A benefit will be held at Jimmy Seas, 1330 Marine St, Green Bay, on Saturday, Feb. 18. The hours are 4-7 p.m.

There will be music and a silent auction, which includes a football signed by Packers greats Brett Favre and Aaron Rodgers.

If you can’t make it to the benefit, there are other ways to help the Culbertsons. Click here to learn about donation boxes in the Green Bay area and greeting cards for sale.

UF Health’s pediatric heart transplant program saves lives – The Independent Florida Alligator

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Christina Cinca was 13 when she held her sick heart in her hand.

Her doctors, of UF Health Shands Hospital, brought it to her after an eight-hour surgery in September 2014. Since she was 7, she suffered from restrictive cardiomyopathy, a rare disease that prevented her heart from properly filling with blood.

In the palm of her hand, the blond-haired preteen held a piece of her that had limited her life. But she was no longer tied down.

“I got to touch it and I got to look at it and it was just a really weird moment knowing that, you know, this really vital organ was not inside of me anymore and I had, like, somebody else’s,” said Christina, now 15.

She was one of 31 pediatric patients to receive a heart transplant at the hospital between July 2013 to December 2015.

In a report released Jan. 5, the Scientific Registry of Transplant Recipients, a national database, ranked UF Health Shands Hospital as the No. 1 pediatric heart transplant program in the U.S.

Because of the 23 people who make up the hospital’s transplant team, all 31 of those children survived at least a year with their new hearts.

Heather Cinca, Christina’s mother, said her family traveled to different hospitals across the nation in an effort to find the best doctors to treat her daughter.

“We came to the realization that the best place for us to be would be in Gainesville at UF Health because they have an amazing team there,” said the 47-year-old, whose family lives in Cocoa Beach, Florida. “We were in great hands. We knew that.”

Cristina spent about two and a half years on and off the transplant waiting list, Cinca said.

On July 1, 2014, the family received a call.

A heart was ready and waiting for Christina. But at the time, she was suffering from a case of pneumonia, which disqualified her from being able to take on a new heart.

Two months later, the Cincas got another call. A different heart was waiting.

“I was for sure more excited than I was nervous that time,” Cristina Cinca said. “I was ready. I knew that this was my shot.”

• • •

Heather Cinca said the successful surgery was performed by Dr. Mark Bleiweis.

Bleiweis, the director of the UF Health Congenital Heart Center and the chief of congenital cardiothoracic surgery, said the program’s success is due to his team.

“I think we’ve assembled a phenomenal group of doctors and nurses and transplant coordinators and all of the staff that we need to take care of these very complex patients,” he said.

He said doctors at UF Health perform the most pediatric heart and lung transplants in the nation. To receive a new heart, patients can spend months, or sometimes years, waiting.

“We also kind of have to take a moment to recognize the wonderful gift that the donor family has given to us,” Bleiweis said. “I feel blessed every day that I get to do this, and it’s hard work, but it doesn’t feel like work.”

Ed Jimenez, the CEO of UF Shands, said he’s excited the hospital has risen to the top of pediatric heart transplants.

“It signifies that, at UF Health, we’ve had the chance for some time now to build an amazing team,” Jimenez said.

He said the transplants are successful because of more than just the surgeons.

“It takes a whole army of people and it starts with the moment our team identifies that a patient is sick enough that they need to be considered for a new heart,” he said. “We take care of the patients for life afterwards.”

Jimenez said the transplant team, which includes nurses, doctors, technicians and other workers, have changed the lives of patients and families. The recent report proves that, he said.

“The people that work here have proven, now through objective data, that they can deliver amazing results,” he said. “They wake up every day knowing that they have a chance to make a difference. Every night, they go home knowing that they’ve made a difference and they touch people in life-altering ways.”

• • •

Christina’s new heart has changed her life, her mother said.

Before, her heart condition forced her to need a wheelchair to navigate the hallways at school. Now, she plays tennis, rides her bike and wakeboards with no physical restrictions, her mother said.

“She’s gone from this girl who, you know, I couldn’t get her down to the beach to, she’s turning 16 next month and she, I can’t keep up with her,” Cinca said.

Christina Cinca said before her transplant, she didn’t realize how much her heart affected her life. But because of the doctors at Shands, who are like family to the Cincas now, and her new heart, she sees what she’s been missing out on.

“Now, after the transplant, I see that this new life I have is so much better,” she said. “I can literally do anything I want.”

New ‘MAGIC algorithm’ can predict transplant patient’s risk of developing graft-versus-host disease – News-Medical.net

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Researchers at Mount Sinai Health System have discovered a way to predict whether blood cancer patients who received a bone marrow transplant will develop graft-versus-host disease, a common and often lethal complication, according to a study published in JCI (The Journal of Clinical Investigation) Insight.

This international study at 11 cancer centers examined blood samples from almost 1,300 bone marrow transplant patients and found that two proteins present in blood drawn a week after a transplant can predict whether a patient will develop a lethal version of graft-versus-host disease, weeks before the disease’s symptoms normally occur. Scientists at the Mount Sinai Acute GVHD International Consortium (MAGIC) created an algorithm, dubbed the “MAGIC algorithm,” that determines a patient’s risk of developing the disease by measuring concentrations of these proteins, ST2 and REG3a.

“The MAGIC algorithm gives doctors a roadmap to save many lives in the future. This simple blood test can determine which bone marrow transplant patients are at high risk for a lethal complication before it occurs,” says James L.M. Ferrara, MD, Professor of Pediatrics, Oncological Sciences and Medicine, Hematology and Medical Oncology at The Tisch Cancer Institute at the Icahn School of Medicine at Mount Sinai, and Co-director of MAGIC. “It will allow early intervention and potentially save many lives.”

Doctors at Mount Sinai are now designing clinical trials to determine whether immunotherapy drugs, normally used during the onset of graft-versus-host disease, would benefit patients as soon as this new blood test determined they would be at high risk for severe onset of the disease. Researchers believe that if patients receive the drugs once the test is administered, which is well before symptoms develop, they would be spared the full force of the disease, and fewer of them would die.

“This test will make bone marrow transplant safer and more effective for patients because it will guide adjustment of medications to protect against graft-versus-host disease,” says John Levine, MD, MS, Professor of Pediatrics and Medicine, Hematology and Medical Oncology at The Tisch Cancer Institute at the Icahn School of Medicine at Mount Sinai and Co-director of MAGIC. “If successful, the early use of the drugs would become a standard of care for bone marrow transplant patients.”

Graft-versus-host disease occurs when the bone marrow donor’s immune system sees the recipient’s body as foreign and launches an immune response, attacking the recipient’s tissue, primarily the skin, liver, and gastrointestinal tract. Between 40 and 60 percent of patients who receive bone marrow transplants later develop severe graft-versus-host disease, and about 40 percent of people who develop the disease die.

LaMelo Ball Dedicates Historic Game To Student In Need Of Heart Transplant – CBS Local

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CHINO HILLS (CBSLA.com) — Dozens of people gathered for an emotional vigil to pray for Chino Hills high school student Lexi Anderson, one night after a historic basketball game on campus.

The 15-year-old desperately needs a new heart and her condition just took a turn for the worse.

lexi LaMelo Ball Dedicates Historic Game To Student In Need Of Heart Transplant

It hasn’t been easy on her best friends and the star of that game since Anderson is staying alive now only through a machine.

“Just love and support and prayers and positive thoughts,” friend Kelly Taylor said.

“To see how many people really care about Lexi and everything she’s going through makes me feel a lot better,” friend Maddie Stuart said.

After LaMelo Ball scored 92 points he tweeted “Love for Lexi” and then dedicated the game to her.

CBS2’s  Jim Hill sat down and spoke with Ball and his father.

“The next time you see her, what will you say to her? Hill asked.

“Glad you survived, Prayin… stay positive.”

Ball is the younger brother of UCLA star Lonzo Ball who is expected to be a high first-round NBA draft pick. LiAngelo Ball is his other brother and team’s leading scorer. Both are committed to UCLA.

Outside Agape Fitness, where Lexi’s mom is an instructor, the crowd of her friends wrote her messages and released purple balloons. Purple is Lexi’s favorite color.

“When you see a 15-year-old child in need of a heart, I’m a father myself, I couldn’t imagine putting myself in those shoes.” Andrew Badger, co-owner of Agape Fitness, said

To wish Lexi well got her Facebook Page  and to help with her medical expenses got to her GoFundMe Page

 RELATED: LaMelo’s Big Game  

Teen heart transplant recipient, NA senior, lives life to its fullest everyday – Tribune-Review

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Updated 2 hours ago

Scott Johnston always has been an active kid. He played hockey, rode dirt bikes and loves to ski the most difficult, formidable slopes he can find.

None of this would be possible without someone saying yes to organ donation, said his father Don Johnston.

Scott, 18, of Marshall, was born with a heart defect and received a heart transplant when he was just 2 weeks old.

“I feel obligated to give him these opportunities because I don’t want to waste his heart,” Don Johnston said. “It would’ve been horrible not to give. A kid lost their life, a family lost their kid and that enabled him to have an active life. I don’t want to miss that opportunity for that heart and give Scotty the life he deserves.”

Scott, a senior at North Allegheny Senior High School, was the recent recipient of a wish from the Make-A-Wish Greater Pennsylvania and West Virginia.

For a week in January, the Johnston family stayed at the Snake River Lodge near the Teton Mountain Range in Jackson Hole, Wyoming, where Scott could ski all he wanted.

Make-A-Wish fulfills wishes for children living with life-threatening medical conditions, and the local chapter has fulfilled more than 17,000 wishes.

They left Jan. 15 for the Make-A-Wish trip, Don Johnston said. His parents and two sisters came along for the trip where Scott was able to have private lessons with an expert skier and guide. The guide took Scott all over to challenging parts of the mountain few others knew about.

“It was great — so much fun,” Scott said.

After breaking his leg riding dirt bikes, Scott took up skiing with his father about eight years ago, and it’s become his passion. He hopes to attend the University of Utah after graduating from high school to be near the mountains and says he’d “major in skiing if he could,” although he’ll probably go with accounting.

Don Johnston said Scotty has had a remarkable life, especially considering how his first month went.

Scott was born with a heart defect so severe that doctors gave his parents two options — hospice care or put their newborn son on the transplant list and hope an organ become available in time. He was rushed to Children’s Hospital of Pittsburgh of UPMC where the family stayed for only two weeks until a heart became available, Don Johnston said. After 30 days in the hospital, Scott finally made his way home after being born. Other than a few health restrictions — no contact football and no competitive sprinting — Don Johnston said they’ve always let their son do what he wanted within reason. Scott works a part-time job after school and maintains his good grades, but he loves to hit the slopes every chance he gets.

“He loves to challenge himself and he wants to ski big bad massive snow hills,” Don Johnston said. “And that doesn’t happen without getting that heart transplant. He’s like the cover boy for what can happen with these kids who are transplanted.”

And for someone who’s had a major organ transplant, Scott had led a relatively healthy life.

They’ve had a few bumps in the road over the years, rejection issues here and there, but Scott has always been active and cared for his health. Other than taking his medications morning and night, he doesn’t think about it at all.

Rachel Farkas is a Tribune-Review contributor.

Toddler gets kidney transplant from Illinois parents’ former classmate – WTVD-TV

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JOHNSBURG, Illinois —
A high school friendship was rekindled by a medical crisis and the reunion resulted in a young boy receiving a life-saving kidney transplant.
Two-and-a-half-year-old Miles Wagner is by all accounts a happy boy, despite a rare liver disease that has caused him to spend much of his young life in the hospital.

“The liver lacks a specific enzyme to detoxify an intermediary product of metabolism,” said Dr. Craig Langman with Lurie Children’s Hospital in Illinois.Miles underwent a liver transplant a year ago, but the metabolic abnormality had already caused kidney failure. Miles’ parents, Ashley and Ryan Wagner, took him to dialysis five days a week while waiting for a kidney donor.

That’s when Liz Wolodkiewicz, a high school classmate of Ryan’s, found out through Facebook that Miles needed help.

“I still remember the day that Miles got sick and how my heart just sank for them,” she said.

Wolodkiewicz got tested and found out she was a match for Miles after two other people did not qualify.

“It was the answer to many prayers. It was that light at the end of the tunnel we had been waiting for,” said Ashley Wagner, Miles’ mother.

On Monday, surgeons completed a successful procedure giving Miles one of Liz’s kidneys. It was a relief to his parents – especially Ryan Wagner, who is diagnosed with stage IV colon cancer. Ryan has gone through more than 70 rounds of chemotherapy and says Miles inspires him to stay positive.”He is just so happy with everything he does. It would almost make me feel guilty not to have the same kind of happiness even though I’m going through my own struggles,” Ryan Wagner said.

Liz said she had no second thoughts about the surgery and has only met Miles twice.

“He’s a little bit of a flirt. He gave me a kiss on the lips then he pushed my cheek and gave me a kiss on the cheek, too,” Wolodiewicz said.

Miles will need to take immuno-suppression medication for his donated organs the rest of his life, but his doctors say he should make a full recovery. He won’t need dialysis anymore and he’ll be able to be an active little boy.

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5th-grader with liver transplant pushes for healthy living at her school – KABC-TV

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LOS ANGELES (KABC) —
Macey O’Kelley, a fifth-grader at Melrose Elementary, leads her school as a healthy example despite having once faced a life-threatening liver condition.As a baby, she suffered from biliary atresia, a condition that causes organ failure due to the lack of bile duct openings in the liver.

O’Kelley underwent a liver transplant and has since shifted her attention to the well-being of her classmates.The 10-year-old has become an ambassador with the Greater Los Angeles division of the American Liver Foundation.

“We’re seeing such a spike in the numbers of fatty liver disease being diagnosed in children and it goes with the rising obesity rates in this country,” Dana Waldrop, of the American Liver Foundation, said.

Her family teamed up with the school’s parent-teacher organization to put together a student jog-a-thon and fitness expo.

“We just wanted the kids to be exposed to different forms of exercise so they could pursue a lifestyle that was healthy,” parent Simone James said.

Being overweight and having fatty liver disease has been linked to cirrhosis and liver cancer.”I think a lot of people don’t even know where their liver is” Waldrop said. “If you ask people, ‘Where’s your liver?’ they don’t know. It’s our third largest organ, but people don’t really understand how important it is to the body.”

O’Kelley is grateful that she has been able to get the chance to live a long and healthy life. For her family, her life has been a victory.

“We’re so grateful to reach this day and to have her be out here, able to run,” her father, Brian O’Kelley, said. “It’s such a privilege, it’s just great.”

(Copyright ©2017 KABC-TV. All Rights Reserved.)

Inspiration + Education : . . . . for parents of children who are going through transplant

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