Sharing Mayo Clinic - Mayo Clinic News Network https://newsnetwork.mayoclinic.org/category/sharing-mayo-clinic-2/ News Resources Thu, 03 Jul 2025 18:59:18 +0000 en-US hourly 1 https://wordpress.org/?v=6.8.1 (VIDEO) A rare cancer. A rare weapon. Curtis Jackson’s inspiring story of survival https://newsnetwork.mayoclinic.org/discussion/video-a-rare-cancer-a-rare-weapon-curtis-jacksons-inspiring-story-of-survival/ Wed, 02 Jul 2025 17:33:34 +0000 https://newsnetwork.mayoclinic.org/?p=403352 Curtis Jackson was living his dream life — a loving and supportive wife, three wonderful kids, and a future that looked as bright as could be. Then, one day, without warning, the dream was shattered. At only 46, Curtis was diagnosed with cholangiocarcinoma, one of the deadliest and most aggressive forms of cancer. It's a silent […]

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Curtis and Kim Jackson

Curtis Jackson was living his dream life — a loving and supportive wife, three wonderful kids, and a future that looked as bright as could be.

Then, one day, without warning, the dream was shattered.

At only 46, Curtis was diagnosed with cholangiocarcinoma, one of the deadliest and most aggressive forms of cancer. It's a silent killer that strikes the liver. It is often diagnosed in later stages, leaving patients with few treatment options and little time to live.

The Jackson family turned to Mayo Clinic, where a team of experts fought the cancer with a weapon rarely used in the battle against this aggressive form of cancer.

Watch: A rare cancer. A rare weapon. Curtis Jackson's inspiring story of survival.

Journalists: Broadcast-quality video (2:17) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

The rare cancer

Years before his cancer diagnosis, Curtis was diagnosed with primary sclerosing cholangitis (PSC). PSC is a chronic liver disease that causes inflammation and scarring to the bile ducts, which work with the liver to help with digestion.

PSC put the Arizona man at higher risk for liver cancer, requiring him to get regular diagnostic screenings. As with most forms of cancer, but particularly cholangiocarcinoma, doctors say early detection is key to improving patient outcomes.

However, with cholangiocarcinoma, there are often no warning signs or symptoms alerting patients of the need to consult with their doctor about getting screened, until it's too late. In Curtis' case, the cholangiocarcinoma was detected in one of his routine screenings at Mayo Clinic, which doctors say likely helped save his life.

Curtis and Kim Jackson consulting with Dr. Aqel Bashar;cholangiocarcinoma,  a rare cancer led to a treatment at Mayo Clinic.
Curtis and Kim consulting with Dr. Bashar Aqel, director, Mayo Clinic Transplant Center in Arizona

"It's a very rare cancer that tends to grow unnoticed," says Dr. Tanios Bekaii-Saab, an oncologist with the Mayo Clinic Comprehensive Cancer Center in Arizona. "If the cancer gets to the point where it's too advanced for surgery or transplantation, universally this is a noncurative or noncurable cancer."

The rare weapon

Doctors say a liver transplant can sometimes be an option for some patients. However, not many transplant centers perform liver transplants on patients diagnosed with cholangiocarcinoma. Mayo Clinic is one of the few centers that do offer liver transplantation for some patients who meet certain criteria.

In Curtis' case, doctors at Mayo Clinic determined a liver transplant was his best chance for survival.

"We're not just here treating the cancer. We're also treating the disease that led to the cancer."

Dr. Tanios Bekaii-Saab, Mayo Clinic Comprehensive Cancer Center in Arizona

"It is a unique form of therapy that is based on research that started at Mayo Clinic in Rochester, Minnesota," says Dr. Bashar Aqel, director of the Mayo Clinic Transplant Center in Arizona.

"We developed some protocols that helped us improve the outcome of transplant in these patients, and without these protocols, a lot of patients with this type of cancer would not make it to transplant," says Dr. Aqel.

"Mayo Clinic's ability to offer this curative option for rare cancers like this has differentiated us from many other transplant centers."

Dr. Bashar Aqel, Director, Mayo Clinic Transplant Center in Arizona

The treatment

Curtis first underwent chemotherapy and radiation at Mayo Clinic. He was then placed on the liver transplant waiting list for a donor organ. While waiting, Curtis says he kept his focus on his family.

"I spent all the time I could with my wife and kids, like basketball practices, homework, anything we could do to help our kids," says Curtis.

When Curtis got the call a donor organ was found, he immediately reported to Mayo Clinic to undergo his lifesaving liver transplant. The surgery was a success. Four weeks later, Curtis was back at home with family recovering well and feeling a deep sense of gratitude for his organ donor and his team at Mayo Clinic.

Curtis with his children following his successful liver transplant, due to his rare cancer.
Curtis with his children following his successful liver transplant Photo courtesy: Jackson family

"Thank you because now I get to see my daughters get married, go to college, I get to see my son live his dreams and go to college and get married," says Curtis. "I get to live and grow old with my wife. I can't say this enough to everyone, 'thank you.'"

"What Mayo has done to make these transplants happen is a miracle."

Curtis Jackson, liver transplant recipient and cancer survivor
Curtis and Kim following his liver transplant Photo courtesy: Jackson family

"We're already observing excellent function from Curtis' new liver, with the majority of his liver tests returning normal results," says Dr. Aqel. "His recovery has been remarkably swift and impressive."

"A lot of love goes out to the people in that family," says Gwyn Jackson, Curtis' oldest daughter in reference to the organ donor's family. "They allowed us to have our dad back and we're so grateful because we love him so much."

Doctors at Mayo Clinic are monitoring Curtis' progress closely. Meanwhile, Curtis' future is back to looking bright, only now with even deeper gratitude in his heart.

"This truly is the gift of life," says Curtis.


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How a Mayo Clinic neurologist used AI to help restore a patient’s health https://newsnetwork.mayoclinic.org/discussion/how-mayo-clinics-ai-helped-a-neurologist-give-a-patient-his-life-back/ Mon, 30 Jun 2025 10:30:00 +0000 https://newsnetwork.mayoclinic.org/?p=403848 Just one day after undergoing brain shunt surgery at Mayo Clinic, 75-year-old Minoo Press put his wheelchair aside and walked out of the hospital on his own. For the first time in two years, his mind was clear. His balance had returned. He was no longer losing control of his bladder.  The significant turnaround followed […]

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Minoo Press (right) and his wife, Zarin Press. Photo courtesy of Minoo Press

Just one day after undergoing brain shunt surgery at Mayo Clinic, 75-year-old Minoo Press put his wheelchair aside and walked out of the hospital on his own. For the first time in two years, his mind was clear. His balance had returned. He was no longer losing control of his bladder. 

The significant turnaround followed two years of steady cognitive and physical decline. A retired engineer known for his sharp mind and independence, Press gradually withdrew from daily life. Even simple routines became impossible. 

He visited leading medical centers across the country, undergoing spinal taps, surgical procedures and advanced imaging to evaluate for conditions ranging from Alzheimer's disease to Parkinson's. 

Some clinicians at those institutions also considered normal pressure hydrocephalus, a condition in which excess fluid builds up in the brain. But because Mr. Press' symptoms overlapped with signs of neurodegenerative disease, the doctors could not confirm the diagnosis or recommend surgery. They told him there was nothing more they could do. 

From rapid diagnosis to life-changing care

After an exhaustive search for answers, Press' family brought him to Mayo Clinic where he was evaluated by Dr. David Jones, a neurologist and director of Mayo Clinic's Neurology Artificial Intelligence Program.   

Minoo Press (center) is pictured with his sons, Carl and Cyrus, and his wife, Zarin, before undergoing a stent procedure at Mayo Clinic. At the time, he was unable to walk and used a wheelchair. Photo courtesy of Minoo Press

Dr. Jones used an innovative artificial intelligence tool developed by his team, called StateViewer. The tool works with a widely available brain scan known as fluorodeoxyglucose positron emission tomography, or FDG-PET, comparing a patient's brain activity to thousands of confirmed dementia cases. It highlights patterns linked to nine types of the disease — from Alzheimer's and frontotemporal dementia to less common forms with overlapping symptoms. 

In a recent study published in Neurology, the tool identified the correct dementia type in 88% of cases and helped clinicians interpret scans up to three times more accurately and twice as fast as standard methods.  

In Press' case, the tool helped Dr. Jones rule out Alzheimer's and other types of dementia. That was the turning point.  

With neurodegenerative disease ruled out, Dr. Jones diagnosed Press with normal pressure hydrocephalus and confirmed that he was a candidate for a shunt procedure to relieve the pressure on his brain and potentially reverse the symptoms.  

A last-minute surgical cancellation made it possible for Press to have the procedure that same week.

Within three days at Mayo Clinic, he had a clear diagnosis, a treatment plan and underwent brain surgery to place a shunt that would drain excess fluid from his brain. The procedure was performed by Dr. Ben Elder, a neurosurgeon and clinician-scientist.  

Press, who traveled from Chicago, noticed immediate improvements. His thinking was sharper, his steps steadier and he felt like himself again. 

A clear mind, steady steps and hope

Dr. Jones says Press' case highlights the promise of combining AI with clinical care to accelerate diagnosis, scale expert clinical knowledge and help guide treatment planning.  

"When you're looking at overlapping symptoms, it's easy to miss the underlying cause," Dr. Jones says. "StateViewer gave us the clarity we needed to make an informed diagnosis and take action." 

Press continues physical therapy and says he's improving every day. He hopes his story can help others who are navigating the same often misdiagnosed and debilitating condition. 

"I can enjoy time with my family again and I can go out with my friends. I can even do my own taxes. These are the moments I thought I had lost forever," Mr. Press says. "Mayo Clinic gave me my life back." 

Related article:

Mayo Clinic's AI tool identifies 9 dementia types, including Alzheimer's, with one scan

Mayo Clinic researchers have developed a new artificial intelligence (AI) tool that helps clinicians identify brain activity patterns linked to nine types of dementia, including Alzheimer's disease, using a single, widely available scan — a transformative advance in early, accurate diagnosis. Read more.

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(VIDEO) Breathing easy thanks to the gift of life and new Mayo Clinic Lung Transplant Program in Arizona https://newsnetwork.mayoclinic.org/discussion/video-breathing-easy-thanks-to-the-gift-of-life-and-new-mayo-clinic-lung-transplant-program-in-arizona/ Thu, 26 Jun 2025 18:26:37 +0000 https://newsnetwork.mayoclinic.org/?p=404214 Craig Scherer takes a deep breath and a bold step into his second chance at life Lung disease is a condition that affects millions of people worldwide. Some of those diseases, like chronic obstructive pulmonary disease, or COPD, are among the top leading causes of death globally. COPD alone affects over 16 million people, like […]

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Craig Scherer takes a deep breath and a bold step into his second chance at life after a lung transplant at Mayo Clinic.

Craig Scherer takes a deep breath and a bold step into his second chance at life

Lung disease is a condition that affects millions of people worldwide. Some of those diseases, like chronic obstructive pulmonary disease, or COPD, are among the top leading causes of death globally.

COPD alone affects over 16 million people, like Arizona resident Craig Schuerer. Craig got treatments to manage his condition, but there's no cure. The disease is progressive, meaning it gets worse over time, making it harder and harder for a person to breathe.

Craig's disease progressed until treatments no longer worked, leaving him gasping for air and facing death. Doctors said his only hope for survival was a lung transplant. 

Craig turned to Mayo Clinic in Phoenix, where doctors just launched a new multidisciplinary, specialized lung transplant program. Craig became the new program's first patient, and today he is breathing easy.

Watch: Breathing easy thanks to the gift of life and Mayo Clinic's new lung transplant program in Arizona

Journalists: Broadcast-quality video (2:43) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

It was love at first sight for Craig and Nanci Scherer.

They met at a little league game in the spring of 1992. Eight months later, they were married. This year, Craig and Nanci celebrated their 32nd anniversary. 

Their smiles today are just as radiant as on their wedding day.

Nanci and Craig Scherer on their wedding day in 1993. Photo courtesy: Scherer Family

Happiness turns to heartache

The couple raised four children. Their family grew to include 14 grandchildren and six great-grandchildren. They planned for retirement and looked forward to the day when they could travel and enjoy their future together.

But when Craig turned 60, life took a sharp turn. He was diagnosed with chronic obstructive pulmonary disease. COPD is a progressive disease that causes damage to the lungs, making it hard to breathe. Treatments can help manage the disease, but there's no cure. As the disease continues its silent assault, quality of life often slowly slips away. 

"I couldn't do things, and even if I could do things, I didn't have the strength to do it or the stamina because my lungs would wear out," says Craig.

Craig's COPD continued to get worse. Eventually he couldn't breathe, walk or even talk. "It was silent at our house. We didn't talk because he couldn't talk. He didn't have the oxygen," says Nanci. "We lived in silence and isolation."

Craig Scherer's lung condition  had frequently landed him in the hospital.
Craig's lung condition frequently landed him in the hospital Photo courtesy: Scherer family

Last hope for survival

Eventually, Craig reached end-stage lung disease. Treatments no longer worked and his health continued to decline. Craig was left with only one last hope for survival, a lung transplant. Craig and Nanci turned to Mayo Clinic in Arizona.

"We see this with patients, when there are no other options, no medical interventions you can do at that point," says Dr. Jonathan D'Cunha, surgical director of the Mayo Clinic Lung Transplant Program in Arizona transplant center

For six years, Dr. D'Cunha had been working on building a multidisciplinary team of medical and surgical experts to create a new lung transplant program at Mayo Clinic in Arizona. 

The transplant center is the largest in the country, performing more adult solid organ transplants than any other center in the U.S. The addition of the lung transplant program establishes Mayo Clinic in Arizona as a comprehensive transplant destination medical center.

The program will provide transplantation for the full range of patients with end-stage lung disease. "This is the beginning of a remarkable new era for lung transplantation in Arizona," says Dr. D'Cunha. "We are excited and honored to offer patients and families renewed hope and a second chance at life through Mayo's unrivaled expertise in comprehensive adult organ transplant care."

Craig became the new program's first patient to receive a lung transplant.

Giving the gift of life

On May 30, 2025, Dr. D'Cunha led a team of surgeons in performing Craig's lung transplant. The surgery was a success, and soon after, Craig was slowly starting to breathe with his new lungs. 

"It is surreal to be able to breathe and not gasp for air when I talk," says Craig, who was up and walking within days of surgery. "I told the doctors when I got here that I will do whatever it takes. I'm 100% committed. If you want me to walk six times a day, I'll walk seven," says Craig.

Craig Scherer walking two days after his lung transplant
Craig two days after his lung transplant Photo courtesy: Scherer family

"He did phenomenal," says Dr. D'Cunha. "His optimism and energy he brought with him is absolutely critical because the stronger you are going into these big operations, the better you are on the other side.

"I'm very proud of Craig. He always amazing me throughout the journey of transplant," says Ashraf Omar, M.B., B.Ch., medical director of the transplant program. "He is a special person. Motivation is the cornerstone of his success."

A fighter's farewell

A joyful farewell from the transplant team as Craig heads home

Two and a half weeks after his transplant, Craig was heading home. The transplant team bid him farewell with a victory celebration with pom-poms waving and confetti raining down.

Watch: Craig crosses the finish line of his journey with a breathtaking victory celebration from Mayo's transplant team.

A few days later, on June 23, Craig returned to Mayo to join his transplant team for a news conference announcing the official launch of the lung transplant program.

It was also Craig's 67th birthday.

"The lungs are my birthday gift, the best birthday gift I could get in the world"

Craig Scherer

In honor of his organ donor and the donor family, Craig used his new lungs to blow out the candles on his birthday cake.

Watch: Craig's heartfelt moment in honor of the gift of life

Craig and Nanci are back at home and looking forward to beginning the next chapter of their story. 

"I have a lot of life left to live in me. Everything is a motivator — my wife, my kids, my grandkids, my health," says Craig. "Before, I had no quality of life and couldn't do anything. Now, there's nothing I can't accomplish." 

Craig and Nanci holding a lung transplant pillow signed by everyone on the transplant team

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Mayo Clinic in Arizona announces launch of new lung transplant program offering hope and restored function to patients facing advanced lung disease https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-in-arizona-announces-launch-of-new-lung-transplant-program-providing-life-saving-hope-and-restored-function-to-patients-battling-advanced-lung-disease/ Tue, 24 Jun 2025 01:48:16 +0000 https://newsnetwork.mayoclinic.org/?p=404010 First patient celebrates 67th birthday using his new lungs to blow out candles on his birthday cake in honor of receiving the gift of life PHOENIX — Mayo Clinic in Arizona announced it has added lung transplantation to its nationally recognized solid organ transplant program. The program delivers world-class care to critically ill patients battling […]

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First patient celebrates 67th birthday using his new lungs to blow out candles on his birthday cake in honor of receiving the gift of life

PHOENIX — Mayo Clinic in Arizona announced it has added lung transplantation to its nationally recognized solid organ transplant program. The program delivers world-class care to critically ill patients battling end-stage lung disease who need a lung transplant to survive and restore their quality of life. 

The new Mayo Clinic Lung Transplant Program in Arizona offers a multidisciplinary team of medical and surgical experts in the Southwest, supported by clinical innovation from across Mayo Clinic, bringing unparalleled experience and the latest in research-driven care to every patient.

Dr. Jonathan D'Cunha, program surgical director (L), Craig Scherer, and Dr. Ashraf Omar, program medical director (R)

"With the launch of our new lung transplant program, we are reinforcing our commitment to providing category-of-one care to patients with serious and complex medical needs. This new program strengthens our nationally acclaimed solid organ transplant program in Arizona, giving more patients access to the transformative gift of renewed life," says Richard Gray, M.D., CEO of Mayo Clinic in Arizona. 

Jonathan D'Cunha, M.D., Ph.D., surgical director of the transplant program, says the team of experts will provide transplantation for the full range of patients with end-stage lung disease.

"This is the beginning of a remarkable new era for lung transplantation in Arizona," says Dr. D'Cunha. "We are excited and honored to offer patients and families renewed hope and a second chance at life through Mayo's unrivaled expertise in comprehensive adult organ transplant care."

Craig Scherer became the new program's first patient to undergo a lifesaving lung transplant on May 30. Soon after surgery, Craig was already beginning to breathe slowly on his own for the first time in years. He was discharged June 18 and is now back at home.

The lung transplant teams on Craig's discharge day sending him home with a big celebration

"It is surreal to be able to breathe again and not gasp for air. The reality has not even set in yet. I'm putting a lot of thought into finding the right words to express how deeply grateful I am for this gift," says Craig. 

Craig is one of the millions worldwide who have suffered loss of lung function due to chronic respiratory diseases, including chronic obstructive pulmonary disease, or COPD. 

Over the years, the progressive disease slowly robbed the Arizona man of his ability to breathe, leaving him dependent on oxygen tanks for survival. "I couldn't go places, couldn't do things. My quality of life was zero. I was always very anxious and afraid the tanks were going to run out," says Craig. 

Chronic lower respiratory diseases (CLRDs) are the fifth-leading killer in the U.S., according to a 2024 report from the Centers for Disease Control and Prevention. The report cited CLRD as the cause of death for approximately 145,000 people in the U.S. in one year. 

Craig's wife, Nanci, says he also lost the ability to speak. "He didn't have the oxygen to talk. We lived in silence and isolated," says Nanci. The couple has been married for 32 years.

Eventually, Craig reached the final stage of lung failure. Oxygen tanks were no longer enough to help him breathe. "We were truly desperate. We were down to weeks," says Nanci. "I didn't think he would make it to his next birthday." 

Dr. D'Cunha led the team of surgical specialists that performed Craig's transplant. He said patients like Craig all too often reach a point where supplemental oxygen is no longer sufficient to meet their respiratory needs.

"There are no medical interventions at that point. They have run out of time," he says. "Lung transplant becomes the patient's only option. In Craig's case, without the transplant, it likely would have resulted in his death."

Craig relied on continuous supplemental oxygen for years until it was no longer enough to sustain him. Photo courtesy: Scherer family

Three weeks after his transplant, with daily physical therapy, Craig is back to walking and talking like he did years ago. "It is not an easy journey," says Dr. D'Cunha. "But it's a journey that gives patients like Craig hope — to see his grandchildren, the next milestone, or whatever his goals may be."

Ashraf Omar, M.B., B.Ch., medical director of the lung transplant program, took note of Craig's determination from the start. "I'm proud of Craig. He has always amazed me," says Dr. Omar. "He's a special person. Motivation is the cornerstone of his success." 

Mayo Clinic's new program in Arizona will offer the latest advancements in lung transplant innovation, including ex vivo lung perfusion (EVLP), which is considered one of the most transformative breakthroughs in lung transplantation in recent years. EVLP improves the success of lung transplantation by helping preserve and evaluate donor lungs prior to transplant.  

Mayo Clinic Transplant Center, with integrated programs in Minnesota, Florida and Arizona, is the nation's largest provider of adult solid organ transplantation. Mayo Clinic in Arizona is on target to surpass its 2024 record number of nearly 900 transplants.

In the first week of June alone, the Arizona program successfully performed a record-breaking 36 transplants. The addition of the lung transplant program establishes Mayo Clinic in Arizona as a comprehensive transplant destination medical center.

"As the leader in organ transplantation in the country, we are committed to our vision where no patient dies while waiting for a lifesaving transplant," says Bashar Aqel, M.D., director of the Mayo Clinic Transplant Center in Arizona. "Our new program meets an urgent need for so many patients fighting to survive end-stage lung disease."

On June 23, Craig celebrated his 67th birthday. He joined the team of surgeons who performed his lifesaving transplant for a news conference announcing the launch of the new transplantation program.  

The highlight of the event came when Craig addressed the crowd sharing what the transplant means to him. "These lungs are my 67th birthday gift," said Craig, his hands resting on his chest. "This is the best birthday gift I could get in the world. It gave me life." 

Craig shares his gratitude for Mayo Clinic, staff, doctors, his family and his organ donor

Craig also expressed his gratitude for the staff at Mayo, the doctors, his family, his organ donor and the donor's family. "My heart goes out to the family. One day I hope I get to communicate my gratitude to them for giving me life. Most people don't get a second chance. I do," said Craig.

Dr. D'Cunha lit candles on a birthday cake for Craig in the shape of a set of lungs. In honor of the gift of life, Craig used his new lungs to blow out the candles with one single breath. Watch the emotional moment that was met with cheers and applause in recognition of the gift of life.

Craig and Nanci returned home to spend the rest of his birthday with family. Together they share four children, 14 grandchildren and six great-grandchildren.  

"I have a lot of life left to live in me. Everything is a motivator — my wife, my kids, my grandkids, my health," says Craig. "Before, I had no quality of life and couldn't do anything. Now there’s nothing I can't accomplish."

Photo courtesy: Scherer family

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About Mayo Clinic 
Mayo Clinic is a nonprofit organization committed to innovation in clinical practice, education and research, and providing compassion, expertise and answers to everyone who needs healing. Visit the Mayo Clinic News Network for additional Mayo Clinic news.

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(VIDEO) Hockey exec wins faceoff against heart issue https://newsnetwork.mayoclinic.org/discussion/video-hockey-exec-wins-faceoff-against-heart-issue/ Wed, 09 Apr 2025 14:00:00 +0000 https://newsnetwork.mayoclinic.org/?p=401672 A general manager of a professional sports team is a job that inherently comes with a high amount of stress, difficulty and demand — making important decisions that affect the future of a franchise. But recently at Mayo Clinic, Chicago Blackhawks GM Kyle Davidson made a crucial choice about his personal health that affects his […]

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Dr. Jason Anderson discussing the new valve with Kyle Davidson

A general manager of a professional sports team is a job that inherently comes with a high amount of stress, difficulty and demand — making important decisions that affect the future of a franchise.

But recently at Mayo Clinic, Chicago Blackhawks GM Kyle Davidson made a crucial choice about his personal health that affects his own future — undergo another open-heart surgery or have a less invasive procedure to repair his heart.

Watch: Kyle Davidson's story

Journalists: Broadcast-quality video pkg (4:08) is in the downloads at the end of the post. Please courtesy: "Mayo Clinic News Network." Read the script.

It's something Chicago Blackhawks General Manager Kyle Davidson has had to deal with all his life.

"I was born with tetralogy of Fallot. It's a congenital heart defect. I needed two open-heart surgeries right around when I was a year old," Kyle says.

Five years ago, at the age of 31, Kyle had another open-heart surgery to place a new pulmonary valve inside his heart.

"It's pretty heavy surgery and long recovery. It was about one and a half, two months," he says.

But five years later, he's having trouble with his heart again.

"I've had a couple, you know, I'd call them episodes over the last number of months, where it didn't feel normal," Kyle says.

And at 36 years old, he's back in the hospital.

"I've learned that that valve is no longer working properly again, and intervention was needed," Kyle says.

"He was noticing a limitation in his ability to exercise to his peak potential. And when we hear a limitation for exercise tolerance, to me, that is a big red flag," says Dr. Jason Anderson, an interventional cardiologist at Mayo Clinic. "His valve was regurgitant, meaning he would send the blood forward. Part of the blood would come backward, and part would go forward. So every heartbeat, he's having some wasted flow that he's trying to keep up with. So your body compensates for that by trying to go faster and beat harder."

Kyles new valve

A replacement pulmonary valve is needed. There are two options: another open-heart surgery or a less invasive transcatheter procedure.

"With all things being equal and having the two options on the table, I certainly preferred and was happy that the transcatheter approach was something that was applicable to my case," Kyle says.

"Compared to 2019 when I had my open-heart surgery, I'm just at a very different point in my life, you know. I do have the general manager's job. I do have two kids that weren't around five years ago. You have to make sure that you're putting yourself in the best situation, from a health standpoint, to be there for them for a long time," he adds.

At Mayo Clinic, pulmonary valve replacement can be performed on eligible patients as a same-day transcatheter procedure — meaning no open-heart surgery and, typically, no hospital stay. It requires only a mild form of sedation and usually takes under an hour to perform.

"The procedure is basically to give him a new valve within his existing, surgically placed valve. We do that through a catheter method, where you place equipment into the heart. We work through a large tube that goes through the vein in his leg," says Dr. Allison Cabalka, an interventional cardiologist at Mayo Clinic.

"When that valve is deployed and opened, in the next heartbeat, he has his new valve functioning brand-new, right out of the box," says Dr. Anderson.

Another aspect of this procedure that sets Mayo apart is that it’s done in tandem by two Mayo Clinic cardiologists through a method called co-scrubbing.

"When Dr Anderson and I are working together, we often think of it as two co-pilots," says Dr. Cabalka. "If we have anything that's unexpected, we have collaborative decision, we have immediate response, and we have the ability to take care of any potential complications or any potential barriers to success to make that procedure go as smoothly as possible."

Dr. Allison Bavalka and Dr. Jason Anderson in surgery, working on a heart.
Dr. Cabalka and Dr. Anderson in surgery

And just a few hours after the procedure, Kyle is out of the hospital, heading home and back to work.

"I'm very fortunate that there are medical advances to the point where I don't have to step away, I don't have to miss any significant time," Kyle says.

Kyle’s experience is typical for patients at Mayo Clinic undergoing this procedure.

"It's not an exception that he went home the same day, that is now the norm," says Dr. Anderson. "His body is now able to achieve the same amount of forward flow with less stress and less exertion."

"Now that we're a couple weeks out and I'm back to my normal routine, I feel 100%. I feel great," Kyle says.

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Hidden mutation leads to groundbreaking genetic discovery https://newsnetwork.mayoclinic.org/discussion/hidden-mutation-leads-to-groundbreaking-genetic-discovery/ Thu, 03 Apr 2025 11:00:00 +0000 https://newsnetwork.mayoclinic.org/?p=401496 When Vicki Tennant came to Mayo Clinic for answers about her heart condition, she never expected to be at the center of a medical breakthrough. But her case led Mayo Clinic researchers to identify a previously undetectable genetic phenomenon. Most genetic diseases are linked to protein-coding regions, which is also where standard testing has been […]

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When Vicki Tennant came to Mayo Clinic for answers about her heart condition, she never expected to be at the center of a medical breakthrough. But her case led Mayo Clinic researchers to identify a previously undetectable genetic phenomenon.

Most genetic diseases are linked to protein-coding regions, which is also where standard testing has been focused. The discovery based on Tennant's case, published in Circulation: Heart Failure, was that disease-causing variants can hide in areas of DNA that don't make proteins.

Specifically, a tiny glitch in one of these regions, combined with a known mutation, was enough to cause Tennant's disease. 

"The level of care and expertise at Mayo Clinic is something I've never experienced," Tennant says. "It’s amazing to think that what they found in me could change how doctors diagnose others."

A clue hidden in the heart

In her home state of Iowa, Tennant had been diagnosed with hypertrophic cardiomyopathy, a genetic condition that thickens the heart muscle and increases the risk of heart failure. But her case didn't follow the usual pattern.

She had an irregular heartbeat that required several procedures to restore a normal rhythm, and she had also had a stroke. Her cardiologist in Iowa referred her to Mayo Clinic for further evaluation.

At Mayo Clinic, what began as a closer look at Tennant’s heart tissue by cardiologist Jeffrey Geske, M.D., quickly gained momentum. Pathologist, Joseph Maleszewski, M.D., examined the biopsy and identified microscopic abnormalities that indicated the need for further investigation.

Around the same time, Tennant underwent a routine gallbladder surgery in Iowa. A liver biopsy performed during that procedure also revealed abnormalities, prompting Tennant to ask her Mayo team to review the findings. That request helped deepen the investigation into the underlying cause of her health issues.

When standard clinical genetic testing did not yield an answer, Dr. Geske asked Naveen Pereira, M.D., a cardiovascular genomicist, to take a closer look at Tennant's DNA. Dr. Pereira searched Tennant's genome for hidden patterns and anomalies.

"This discovery highlights the strength of integrating advanced genomic science with clinical expertise to solve some of medicine's most complex mysteries."

Naveen Pereira, M.D.

He found that Tennant had one known disease-causing mutation in a gene responsible for producing an enzyme that prevents substances from accumulating in the cell. Normally, two mutations are needed to cause a genetic condition called mucopolysaccharidosis type IIIA. But something still didn't add up — besides having only one variant, Tennant lacked some of the typical symptoms of the disease.

Dr. Pereira conducted additional lab tests to check for signs of the condition in her cells, however, which led to confirming it as her diagnosis.

Mucopolysaccharidosis type IIIA usually appears in early childhood and causes progressive neurological decline. But Tennant, in her 40s, had no signs of neurological issues. In her, the condition showed up as heart disease — an unexpected and atypical presentation that added to the mystery.

A genetic mystery unfolds

With unanswered questions remaining, Dr. Pereira expanded the team, bringing in experts from Mayo Clinic's Center for Individualized Medicine: Filippo Pinto e Vairo, M.D., Ph.D., medical director of Mayo Clinic’s Program for Rare and Undiagnosed Diseases; Eric Klee, Ph.D., the Everett J. and Jane M. Hauck Midwest Associate Director of Research and Innovation; and Laura Lambert, Ph.D., director of the Functional Omics Resource Laboratory.

Some of the Mayo Clinic experts who helped uncover the hidden genetic cause behind a rare heart condition. Top row, from left: Jeffrey Geske, M.D; Naveen Pereira, M.D.; Laura Lambert, Ph.D.; Bottom row, from left: Filippo Pinto e Vairo, M.D., Ph.D.; Eric Klee, Ph.D.; Joseph Maleszewski, M.D.

The team applied advanced sequencing and analysis methods to search beyond the usual areas of the genome. That's when they made another discovery.

"We found a variant in a stretch of DNA located between two genes — it's a region often missed by standard genetic testing because it doesn't code for proteins," says Dr. Pinto e Vairo. "Now we had to prove it was actually disrupting how the gene worked and contributing to the disease in our patient."

To validate the finding, Dr. Lambert and the Functional Omics Resource Laboratory team used innovative, light-based methods to test whether the DNA change was interfering with how the gene worked.

"This gave us the functional proof we needed to confirm that this variant was actually causing disease," Dr. Lambert says.

Combined with the known mutation previously identified by Dr. Pereira, this hidden change provided the missing explanation for Tennant's condition.

"This finding is a testament to the transformative potential of looking beyond the expected," Dr. Klee says. "It underscores how advancements in genomics and technology are enhancing our ability to understand the impact of an increasing number of genetic changes."

Together, these insights revealed an entirely new way genetic disease can emerge and take shape.

"This discovery highlights the strength of integrating advanced genomic science with clinical expertise to solve some of medicine's most complex mysteries," says Dr. Pereira. "This finding could help change our approach and diagnose other patients with unexplained conditions, and expand the scope of precision medicine."

A long-awaited answer

For Tennant, the discovery has provided long-sought clarity. She enjoys working on her farm, spending time outdoors and operating her tractor — all activities she now approaches with a deeper understanding of her health.

While there is no cure for Mucopolysaccharidosis type IIIA with cardiac involvement, her diagnosis allows for more precise monitoring and offers hope for potential future treatments, including gene therapy.

"I also hope this helps someone else," Tennant says. "If sharing my story means someone gets diagnosed sooner, then it's all worth it."

For a complete list of authors, disclosures and funding, review the study.

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(VIDEO) When seizures don’t stop: The battle against drug-resistant epilepsy https://newsnetwork.mayoclinic.org/discussion/video-when-seizures-dont-stop-the-battle-against-drug-resistant-epilepsy/ Wed, 02 Apr 2025 17:30:44 +0000 https://newsnetwork.mayoclinic.org/?p=401236 For Anthony Maita, 'Buddy' is not just any other dog. "He's the best thing that's ever happened to me," says Anthony. It's no wonder, considering Buddy was right by Anthony's side during one of the most challenging times of his life — when Anthony began having epileptic seizures. Watch: When seizures don't stop: Anthony's battle […]

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Anthony Maita and his dog Buddy

For Anthony Maita, 'Buddy' is not just any other dog.

"He's the best thing that's ever happened to me," says Anthony.

It's no wonder, considering Buddy was right by Anthony's side during one of the most challenging times of his life — when Anthony began having epileptic seizures.

Watch: When seizures don't stop: Anthony's battle against drug-resistant epilepsy

Journalists: Broadcast-quality video (2:38) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

"I started having the seizures, noticeable seizures, and from there, it just started getting worse and worse," recalls Anthony.

It began after Anthony graduated from high school. He was making plans for his future and looking forward to attending college. That's when the seizures began.

Initially, the seizures were mild but quickly became more severe. "The experience (seizure) is like a loss of time, like a blank spot in your memory — like you're waking up without any recollection of what happened," says Anthony.

"The seizures were several times a week. His lips would be blue. His mouth would be blue," says Patricia Maita, Anthony's mother. "It so hard to see your child go through that and feel so helpless."

Doctors tried to manage Anthony's seizures with medication, but nothing worked. Eventually Anthony was diagnosed with drug-resistant epilepsy, or DRE.

In search of hope, Anthony's family turned to Mayo Clinic in Arizona.

Anthony during assesment with neurosurgeon Dr. Jonathon J. Parker at Mayo Clinic in Arizona

"Up to a third of patients who develop epilepsy during their life will become resistant to medication," explains Jonathon J. Parker, M.D., Ph.D., a neurosurgeon at Mayo Clinic who specializes in treating the most serious and complex cases of epilepsy, including DRE.

"These patients have tried at least two medications, and they're still having seizures. At that point, we know the chances of seizure freedom unfortunately become very low, and that's when we start looking at other options," says Dr. Parker.

A battle for millions worldwide

Anthony is one of approximately 50 million people worldwide diagnosed with epilepsy. It is one of the most common neurological disorders globally. It is characterized by recurrent unprovoked seizures caused by abnormal electrical activity in the brain.

Approximately 15 million people worldwide are diagnosed with drug-resistant epilepsy

Of those diagnosed with epilepsy, approximately 30%, or 15 million people, are considered medication-resistant. Uncontrolled seizures often rob many people of their ability to live and function independently.

While it is rare, seizures can lead to sudden unexplained death in epilepsy, or SUDEP. "We know that more frequent seizures mean the patient is at higher risk of SUDEP, so that's why we are very aggressive about treating epilepsy with all the tools we have available," says Dr. Parker.

Current treatment options for patients with DRE include surgical procedures such as brain resection to remove a portion of the brain tissue responsible for generating seizures. A less invasive procedure involves laser ablation therapy that pinpoints and destroys abnormal brain tissue. While often effective, these surgical approaches carry the risk of possible side effects, such as memory impairment, motor deficits and speech difficulties. 

Neuromodulation is another surgical approach that uses electrical or magnetic stimulation to interrupt abnormal neural activity without removing brain tissue.

Unlocking new hope for patients

Now, a growing number of scientists across the globe are part of an innovative trend in research, investigating novel ways to treat DRE. It involves the use of regenerative medicine as a "reparative" approach to help the brain heal. 

Dr. Parker is the lead investigator of the first-in-human clinical trial at Mayo Clinic which studies the use of implanted specialized inhibitory brain cells as a potential reparative treatment for DRE. Dr. Parker's clinical trial is underway in Arizona.

Dr. Parker and team during brain cell implant procedure at Mayo Clinic in Arizona

"This is an exciting time for regenerative medicine and the potential it may have for millions of people who suffer from the debilitating side effects of drug-resistant epilepsy."

Dr. Jonathon J. Parker, neurosurgeon and clinical trial lead investigator

Mayo Clinic in Arizona is one of 29 sites nationwide participating in the inhibitory brain cell implant clinical trial for patients with focal epilepsy, where seizures originate in a specific region of the brain. 

Anthony became Mayo Clinic's first patient to undergo the investigational brain cell implant. 

"We use a very minimally invasive technique where we inject the inhibitory cells through a pencil eraser-sized incision in the back of the head. Our hope is that, over time, these cells become part of the brain and help repair the neural circuitry, and reduce or prevent seizures without the side effects," says Dr. Parker. The cells are implanted in a one-time, single-dose procedure.

"Honestly, it was pretty easy," says Anthony. "I had no trouble with it." Anthony was discharged from the hospital the next day.

Doctors say it is still too early to determine whether the brain cell implant was effective, but they are hopeful.

Dr. Amy Z. Crepeau and Anthony after brain cell implant at Mayo Clinic

"Anthony has been doing great since the procedure," says Dr. Amy Z. Crepeau, a neurologist at Mayo Clinic. "We have a great deal of optimism in regard to the potential of this brain cell therapy. Developing a safe and effective, minimally invasive treatment that does not carry the possible negative side effects could be a game changer in treating patients with DRE and improving their quality of life."

Tabitha's life-long struggle to control seizures

Tabitha Wilson lives in fear, never knowing when or where the next seizure will strike.

The Florida resident was diagnosed with epilepsy at the age of 2. She was placed on medication that adequately managed her seizures — until the week before her high school graduation. 

Tabitha was diagnosed with epilepsy at the age of 2 Photo courtesy: Tabitha Wilson

"I was 17 years old sitting in history class when the seizure happened," recalls Tabitha. "They had to load me up in an ambulance in front of the whole school."

"It was traumatizing. Something I will never forget."

Tabitha Wilson describing her seizure during class in high school

Tabitha tried new types of medications, but the seizures only got worse.

"I fell down a flight of stairs, burned myself while cooking. I've completely blacked out and don't know where I am or who you are," says Tabitha. She was eventually diagnosed with drug-resistant epilepsy.

Tabitha underwent three brain surgeries to treat her DRE. Still, the seizures continued.

"I'll have good days and bad days. Some days, I'll have two, three, four seizures, back-to-back," says Tabitha.

Tabitha Wilson, drug-resistant epilepsy patient, FL
Despite the sudden return of her seizures just a week earlier, Tabitha walked proudly with her high school graduation class
Photo courtesy: Tabitha Wilson

Her uncontrolled seizures have robbed Tabitha of the ability to live independently. "I can't drive. I can't cook. I can't go swimming alone. I can't take a bath, only a shower and if someone is home with me," says Tabitha.

Watch: Tabitha Wilson shares what it's like to live with drug-resistant epilepsy.

Tabitha turned to Mayo Clinic in Florida where she learned about a clinical trial also investigating the potential of regenerative medicine as a possible treatment for DRE.

Dr. Sanjeet S. Grewaldirector of stereotactic and functional neurosurgery at Mayo Clinic, is leading a team of researchers studying the use of implanted stem cells in conjunction with deep brain stimulation for patients like Tabitha.

Deep brain stimulation is one of the most recent FDA-approved methods of neuromodulation therapy for epilepsy. Studies show that patients who undergo deep brain stimulation experience median seizure reduction up to 70% after five years. However, Dr. Grewal says it is uncommon for patients to become seizure-free. 

"Unfortunately, neuromodulation doesn't give us the seizure freedom we want, and that's why we are trying to combine deep brain stimulation with stem cell therapy to see if we can increase the efficacy of neuromodulation," he says. 

Dr. Alfredo Quinones-Hinojosa (left), Dr. Sanjeet S. Grewal (right) and team performing stem cell implant at Mayo Clinic in Florida Photo courtesy: Dr. Loizos Michaelides

Tabitha became the first patient to undergo the investigational treatment. Dr. Grewal says she is also the first person in the world to undergo surgery for deep brain stimulation and receive stem cell therapy in the thalamus in her brain as a potential treatment for DRE. 

Watch: Dr. Sanjeet Grewal, neurosurgeon, explains how Mayo researchers are leading a new trend in research for treating patients with drug-resistant epilepsy.

The clinical trial involves the use of mesenchymal stem cells, a type of adult stem cell that has anti-inflammatory properties. MSCs may also support tissue repair and healing. Further scientific research is needed to confirm their therapeutic potential in the field of regenerative medicine.

"There are some patients whose seizures are just much harder to treat with the technology we have today. Our hope is that by adding stem cells and their regenerative potential, we can increase treatment success."

Dr. Sanjeet Grewal, Neurosurgeon and Clinical trial lead investigator

The MSCs used in the clinical trial are derived from fat tissue and created at the Human Cell Therapy Laboratory at Mayo Clinic in Jacksonville, Florida under the leadership of Abba Zubair, M.D., Ph.D., a pioneer in cell therapy.

Dr. Zubair's research teams have developed a cost-effective method of producing MSCs for use in potential treatments for conditions such as stroke.

Dr. Zubair has also led innovative research, including sending stem cells to the International Space Station to investigate how microgravity impacts their growth.

"My mission is to discover ways to address problems that patients have been struggling with and find a solution for them.
I believe the future is bright. "

Dr. Abba Zubair, Pioneer in Cell therapy, Mayo Clinic in Florida

Dr. Zubair has several research projects scheduled to launch into space in 2025.

"MSCs are what we call multipotent, meaning they can differentiate into different cell types based on where they're placed. If they are placed near blood vessels, they can become blood vessel types. If they're placed by heart cells, they can become heart cell types," explains Dr. Grewal.

The hope is the MSCs eventually become neural or brain cell types and interact in the part of the brain where the seizures occur. "It's called paracrine signaling, where they're releasing signals to the brain tissue around them and interacting in a way to try to repair that tissue."

"I'm willing to try everything and anything to get some sort of control over these seizures because I've been living with this for so long."

Tabitha Wilson, Clinical Trial participant

Since undergoing the procedure, there has been an improvement in Tabitha's seizure management. However, Dr. Grewal says it is too early to know whether this is due to the deep brain stimulation, stem cells or both. 

Drs. Grewal and Parker say there is still a long road ahead to determine whether these cell therapies are proven safe and effective for patients with DRE. But they agree each day brings them one step closer to a potential treatment or cure for patients like Tabitha and Anthony.

"We've thought about this for generations, we just didn't have these technologies to enable it. Now we do," says Dr. Grewal. "So, whether it's wound healing, neurodegeneration, epilepsy or stroke, there are so many different studies going on investigating the potential of regenerative or reparative therapies."


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Honoring a young girl’s love of nature on her final day https://newsnetwork.mayoclinic.org/discussion/honoring-a-young-girls-love-of-nature-on-her-final-day/ Thu, 27 Mar 2025 14:00:00 +0000 https://newsnetwork.mayoclinic.org/?p=401255 On a Saturday evening in September of 2024, Mae Helgeson arrived at Mayo Clinic in Rochester, her small body reeling from the trauma of a life-threatening accident. Although she was intubated and sedated, it didn't take long for the care team to learn what made this little girl special.  "I distinctly remember meeting her parents […]

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On a Saturday evening in September of 2024, Mae Helgeson arrived at Mayo Clinic in Rochester, her small body reeling from the trauma of a life-threatening accident. Although she was intubated and sedated, it didn't take long for the care team to learn what made this little girl special. 

"I distinctly remember meeting her parents — you just immediately felt warmth and love," says Dr. Brenda Schiltz, a physician in Rochester's pediatric intensive care unit (PICU). "I could so clearly understand who Mae was through them."

At age 11, Mae was both an old soul and a spirited child. "She was a petite thing with huge energy," says her mom, Julie Helgeson. "She was a deeply feeling person."

Mae thrived on being outside, photographing birds on her family's property, her favorite field guide in tow. Mae loved to draw. She was learning to play the ukulele. Her passions began to bloom once the family started homeschooling, allowing Mae to learn in her ideal environment — among the trees.

It was obvious to everyone who met the family that they were tight-knit. "You could tell they knew that girl in and out," says Claire Shea, a nurse who cared for Mae early in her stay.

From the beginning, the team focused on incorporating all the things that mattered to Mae. While this is the goal for every patient, the family's well-defined sense of their daughter enabled the PICU staff to honor her in unique ways.

"I often ask parents to tell me about their child. Is there anything you think is important or that I should know about your family?" says Paige Dighton, one of the Child Life specialists who partnered with Mae's family. "This allows them to share the special things — those unique qualities that make them a family. You learn more than just what's in their chart."

What her parents shared influenced everything from the small details — like the hand-colored paper birds the nurses hung in her room — to the most impactful moments — like how Mae would spend her final hours. 

"They held Mae's hopes and dreams alongside the decisions they were making," says Dighton.

Those decisions were the hardest ones her parents have ever faced.

A musical pause

Several days after her arrival, caring for Mae meant providing a moment of reprieve through music.

When her dad, Matt, stopped Maureen Howell in the hallway of the PICU, he shared how much his daughter loved music and invited her to visit. As a music therapist on the Child Life team — usually with a guitar or guitalele strung across her back — Howell was eager to offer whatever support they wanted.    

The hours she spent in that hospital room would prove to be deeply memorable.

"Before my visit, they had gotten some difficult news from neurology," recalls Howell, "There was a weight — a heaviness — in the room."

Part of her role is to adapt her offerings, which range from therapeutic songwriting to guided imagery for pain relief, to meet the needs of the patient. That meant getting to know Mae and her family first.

"We're not just treating and healing physical needs," explains Jennifer Rodemeyer, manager of the Child Life program in Rochester. "We're also treating and healing the emotional needs of families," making care like Howell's so important.

Family photos and Mae's brothers' artwork decorated the hospital room, giving Howell an immediate sense of their connectedness. A few days earlier, Shea — one of the nurses who'd been there the first night — had decorated Mae's orthopedic boots with Sharpie to highlight her favorite things, from art to trees to tacos, while the nurses' vibrant paper birds had transformed the room into a nature scene.  

"We don't just think about the medical things going on in a patient's room," says Shea. "There's a lot of power in seeing them as a person, hearing the stories and bringing that in." Beyond creating a comfortable space for the family, this can help new members of the care team, like Howell, know how to connect.

As she talked with Mae's parents, they shared videos of their daughter playing the ukulele, welcoming Howell into their world. When she asked if she could sing for them, others in the room quietly departed.

It almost felt like time stood still as she strummed song after song, giving Mae's parents the opportunity to simply hold their girl and grieve.

"They were just lying in bed with her — singing along with me at times, crying, just kind of blocking out everything else that was happening," Howell says. "They just took that time to be together."

From "Over the Rainbow" to "Yellow" by Coldplay, Howell adapted her playlist — and in some cases, the song's lyrics — to offer as soothing an experience as possible for Mae's parents.

At a couple points, Julie noticed Matt glancing at her, silently asking if she needed a break. "I was like, 'No, stay,'" says Julie. She didn't want Howell's music — or their moment with Mae — to end. "Maureen created a remarkable, sacred space."

A devastating decision

It was only a couple of days later that Mae's family was faced with the devastating decision they'd hoped to avoid. As the severity of Mae's brain injury became apparent, they realized their daughter wouldn't be coming home. The question shifted from "Can we save her?" to "How do we say goodbye?"

Following their lead, the team began focusing on end-of-life care.

"Dr. Schiltz gave us the space to think and process our emotions — it didn't feel rushed," says Matt. "I think she would have sat there all day with us. There were some pretty long, quiet times with her next to us, which was what we needed."

From the beginning, Julie and Matt had been clear that a meaningful life for Mae would include photographing her beloved birds and enjoying nature.

"Life in that way for Mae was really not negotiable," Julie says. "They supported us following our instincts. To stay true to who we believe Mae is and what she would want."

"Sometimes, we just need to give the families 'permission' to know what's best," says Dighton.

The team also sat down with the extended family to explain Mae's condition, which wasn't always obvious, since she still looked like Mae — a beautiful sprite of a girl with sun-kissed hair.   

"We wanted to make sure that everybody walked away from this awful, tragic situation feeling as at peace as possible," says Dr. Schiltz.

With the guidance of the Child Life team, the parents took their boys — Henrik, 9, and Oscar, 7 — to a nearby park to prepare them, but also to seek their perspective, which they considered as valuable as their own. "I asked them, 'What would feel like a good life for Mae?'" says Julie.

Even as young kids, they knew what their parents did — that a life for Mae was a life spent outdoors. Freedom for Mae meant engaging intimately with the natural world.  

Before heading to the hospital, Henrik and Oscar chose a leaf to give to their sister, which they planned to add to the growing collection of bird feathers clutched tight in her hands.

Back in Mae's room, the boys peered quietly at the medical equipment, soaking it all in. They showed Dighton the leaf they'd found. Too nervous to place it in Mae's hand, they asked their dad to do it — their own quiet goodbye.   

"This family handled everything with such compassion and tenderness," says Dighton. "They were the epitome of creating something beautiful and impactful," while facing the outcome no family wants.

A beautiful goodbye

With the support of the care team, Julie and Matt carried that beauty into Mae's final day.

"When they were ready to take her off life support, they wanted to do it outside," says Dr. Schiltz.

Several days before, the team had brought Mae into a courtyard near the PICU, giving her the fresh air she loved so much. Now, the family wanted to venture farther out to a quiet, grassy knoll on Mayo's grounds. "We found these big, majestic trees — not just one kind, but like four different species," says Matt. He and Julie appreciated the nod to Mae's love of natural diversity.

Dr. Schiltz, Katie Schiltz, a nurse, and Nanette Matzke, a respiratory therapist, were determined to give them this gift. Together, the trio created a plan to transport Mae, along with her ventilator and other medical items they would need to keep her comfortable.

"This is what we do for our kids and families," says Dr. Schiltz. "We will do everything humanly possible to give every child the best possible care. And that care doesn't end because we can't save them."

As the little group wheeled Mae outside, others in the unit came together to show their love and support. "We turned the corner, and every single nurse was lining the hallway," remembers Julie. "I just dropped to the floor. That moment was as challenging as it was beautiful."

After taking Mae to the family's chosen spot, Matt laid his little girl on a blanket spread across their laps under the trees. The team extubated her, and as the ventilator quieted, chickadees and nuthatches flittered nearby. A brave squirrel ventured close to the blanket.

"Nature showed up right when we needed it," says Matt. "We couldn't have hoped for anything else in that moment."

In the stillness of the day, "her parents just held her," recalls Dr. Schiltz. "They spent a couple of hours outside, with the birds and the sunshine coming through the trees. It was as beautiful a situation as you could ever want."

Later the next day, on Sept. 9, 2024, Mae passed away in her room at Saint Marys with her parents by her side.

Remembering Mae

During her time in Mae's room, Howell had watched Julie and Matt listen to their daughter’s heartbeat with a nurse's stethoscope. She'd asked them if they wanted to record the sound.

Their "yes" enabled Howell to care for them in one final way.

When invited to sing at Mae's funeral, Howell suggested a more lasting way to honor her legacy — recording a song with Mae's heartbeat thrumming in the background. The family played the song at the service, an audible reminder illuminating their daughter's boundless, beautiful energy.

The care team has found their own ways of remembering Mae, who left a mark on all their hearts.

"It was so clear that Mae and her family touched so many people and that so many people were able to support them," says Howell. "This was one of the most beautiful examples of that in my time at Mayo."

Many of the staff still cry when they talk about her. When teaching trainees, Dr. Schiltz makes a point to bring up Mae, encouraging them to care for patients the way the PICU team cared for her.

"None of this was because any one individual did something. It was because we had an entire team focused on helping this family," she says. "It was about giving them everything we could in such a tragic situation."

For Julie and Matt, that care was apparent in the tender way the nurses cleaned Mae's hair. The shared sadness they saw in others' eyes. The willingness to do whatever it took to give them their goodbye. "We were all praying for a miracle at the end of this," says Matt. "It was the miracle we didn't get, but the care we received was remarkable. It was just as much about what we wanted for her as what we needed for us. There was care for all of us."

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(VIDEO) Country rap musician Colt Ford shares his personal story of surviving a near-fatal heart attack https://newsnetwork.mayoclinic.org/discussion/video-country-rap-musician-colt-ford-shares-his-personal-story-of-surviving-a-near-fatal-heart-attack/ Tue, 11 Mar 2025 16:45:00 +0000 https://newsnetwork.mayoclinic.org/?p=400725 It was the evening of April 4, 2024 on a concert stage in Gilbert, Arizona. Colt Ford and his band were performing their signature blend of country, rap and hip-hop music. It was a sold-out crowd. Colt was feeling at the top of his game, and the concert was shaping up to be one of […]

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Colt Ford at Mayo Clinic nine months after a heart attack that nearly claimed his life

It was the evening of April 4, 2024 on a concert stage in Gilbert, Arizona.

Colt Ford and his band were performing their signature blend of country, rap and hip-hop music. It was a sold-out crowd. Colt was feeling at the top of his game, and the concert was shaping up to be one of the band's best shows ever.

No one expected how this night would end.

Watch Colt Ford's story of survival

Journalists: Broadcast-quality video (3:52) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

"Like it was really clicking. We had just made some changes in the set and it was feeling really good. The vibe was good, it all felt good," remembers Colt. "My stage manager said 'That's the best show we've done this year, man, you killed it,' It was incredible."

At the end of the show Colt thanked fans, turned and exited the stage.

No one expected what happened minutes later

Colt Ford at Mayo Clinic in Phoenix, AZ Photo courtesy: Colt Ford

"I woke up seven or eight days later, whatever, and I woke up in the hospital and was like 'What's going on?' I had no concept of anything," says Colt. "When I played the show that night I could do anything but when I woke up in the hospital I couldn't pick up a cup with ice in it and feed it to myself."

Minutes after exiting the stage, Colt suffered a massive heart attack. He was found slumped over in a chair backstage by one of his fellow band members. Emergency crews responded immediately and Colt was rushed to the hospital.

"I couldn't have been anymore on death's door. I died twice that day."

Colt Ford

"When one of the top heart doctors in the world looks at you and goes 'You're 1% of 1%,' it can't get anymore dire than that," says Colt about his odds of surviving his heart attack.

Colt went into cardiac arrest twice. He was revived with electric shocks from a defibrillator to restart his heart in both instances. "He would simply not have survived in most parts of the world that don't have access to such a high level of cardiogenic shock care. Most people do not survive globally," says Dr. Kwan Lee, interventional cardiologist at Mayo Clinic. Lee is part of the multidisciplinary team overseeing Colt's care at Mayo Clinic. Colt also underwent a 10-hour surgery and, for a time, was placed in a medically induced coma.

A silent killer

a graphic of the human chest in blue, orange and red, illustrating heart disease

Heart disease is the leading cause of death worldwide. One of the most common types of cardiovascular disease is a heart attack. In the United States alone, it is estimated that every 40 seconds, someone has a heart attack.

Doctors often warn about the signs and symptoms of a heart attack, such as chest pain or pressureshortness of breath, and fatigue. However, roughly 21% of heart attacks in the U.S. occur with minimal or even no symptoms, according to the American Heart Association. These "silent" heart attacks are known as silent ischemia or silent myocardial infarction.

Colt says he had recently undergone a regular check-up at a different medical center and got a clean bill of health.

"This is the unfortunate nature of heart attacks. It is possible to have tests which don't show blockages, but the nature of blockages is that they can behave unpredictably and suddenly occur," says Dr. Lee. "Despite our best efforts, on a populational level, heart attacks can still occur in patients out of the blue."

Nearly nine months after his heart attack, test results at Mayo Clinic indicate Colt is making excellent progress. Exercise combined with a heart-healthy diet has helped him shed 60 pounds. "I'm about back to being in my college shape," says Colt, who played on the golf team for the University of Georgia before his singing career took off.

Colt and his cardiologist, Dr. Kwan Lee at Mayo Clinic

While his physical health improves, Colt admits the health scare has left him battling anxiety and panic attacks. "For me to say I'm having anxiety and panic attacks, that's even hard for me to say because I ain't scared of nothing," Colt says. "But I'm having to deal with that and share my feelings and all that kind of stuff. So, if you're feeling something, advocate for yourself. Don't just tough it out. Tell somebody."

Dr. Lee says it is not uncommon for patients to experience anxiety, panic attacks and even depression following a heart attack. He recommends patients maintain an open dialogue with their health care team and discuss any issues that arise.

"I'm back, baby!"

Colt has been open about sharing his experience with his nearly three million followers on social media. "I'm back, baby!" Colt shared recently on Instagram. "It's been quite a journey but you guys have inspired me, you kept loving me, kept praying for me, kept sending me messages and I'm working hard to get better."

Just a year shy of his heart attack, Colt has released a new song and is embarking on a new tour. He is hoping his music and story will serve as inspiration for others.

"Be happy that you're here and you're alive and you get a chance. I get a second chance and I want to do something positive with it. I hope I can make a difference in somebody else's life."

Colt Ford
This image has an empty alt attribute; its file name is Screenshot-Colt-Ford-new-headshot-1024x903.png
Photo courtesy: Colt Ford

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Experts bust 5 myths about living kidney donation https://newsnetwork.mayoclinic.org/discussion/experts-bust-5-myths-about-living-kidney-donation/ Mon, 10 Mar 2025 14:15:00 +0000 https://newsnetwork.mayoclinic.org/?p=400677 ROCHESTER, Minn. — More than 90,000 people are on the waiting list for a kidney in the U.S. Unfortunately, less than a third of those waiting for a kidney transplant can expect to get one this year. This comes as rates of chronic kidney disease, which can lead to kidney failure, continue to climb across […]

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Megan Barrowclough donated a kidney to her childhood best friend Regina Bence at Mayo Clinic.

ROCHESTER, Minn. — More than 90,000 people are on the waiting list for a kidney in the U.S. Unfortunately, less than a third of those waiting for a kidney transplant can expect to get one this year. This comes as rates of chronic kidney disease, which can lead to kidney failure, continue to climb across the globe. But there is a way to help. Healthy people can donate one of their kidneys, giving someone a much-needed second chance.

"For people with kidney failure, receiving a kidney from a living donor is the best possible option. When healthy people donate a kidney, they give someone a second chance. This helps kidney recipients get transplanted faster and enjoy a healthier life," says Carrie Jadlowiec, M.D., Mayo Clinic transplant surgeon.

There were more than 6,400 living kidney donations in 2024. And while the number has increased in recent years, it is still less than it was five years ago. Ahead of World Kidney Day on March 13, Mayo Clinic experts are helping dispel some of the most common myths surrounding living kidney donation.

Myth: Living kidney donors need to be in perfect health.

False. While it is important for kidney donors to generally be in good health, there is no expectation that donors be in perfect health. For example, some potential donors with controlled high blood pressure or type 2 diabetes are eligible to be donors. All potential donors need to be at least 18 and undergo a rigorous medical and psychological evaluation to make sure they are a good candidate to donate. At Mayo Clinic, those evaluations can be completed in a single day.

Myth: Anyone over age 50 can't be a living donor.

False. Plenty of people over 50 are living donors.

"We accept donors starting at age 18. There is no upper age limit for someone to be a kidney donor. We do a comprehensive assessment on all potential donors, regardless of their age, to make sure they are an appropriate candidate," says Ty Diwan, M.D., Mayo Clinic transplant surgeon.

Myth: You must be related to someone to be a match.

False. Anyone can be a living kidney donor. You can consider donating a kidney to a relative, friend, acquaintance or anonymously to someone on the waiting list. Sometimes a potential donor who wants to give to a family member or a friend isn't an optimal match for that recipient. In those situations, paired donation is considered. Donors and recipients are matched with other donors and recipients, creating what is known as a kidney chain. People without a specific recipient in mind can also choose to donate to a stranger via nondirected donation.

Myth: Kidney donors can't live an active lifestyle after donation.

False. In most cases, kidney donors can return to normal activities four to six weeks after surgery. Most donors undergo a laparoscopic procedure that involves making a few small incisions instead of a larger one. In some cases, minimally robotic surgery is also an option. Both types of surgery reduce recovery time. Many donors return to their pre-donation hobbies such as running, biking and swimming. As with any surgery, there are risks, and it is important for potential donors to discuss those with their healthcare team.

Myth: Donating a kidney shortens your lifespan.

False. Multiple studies have shown that donating a kidney does not shorten one's lifespan. In fact, kidney donors tend to live longer than the general population.

"Kidney donors undergo rigorous screening prior to donation, and those accepted as donors are often healthier than the general population at baseline. These individuals often continue to live healthy lifestyles post-donation, which can lead to a longer lifespan," says Shennen Mao, M.D., Mayo Clinic transplant surgeon.

Mayo Clinic has several transplant physicians who can talk about living kidney donation, including:

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