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

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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."

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."

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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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.

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.

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.

The post Hidden mutation leads to groundbreaking genetic discovery appeared first on Mayo Clinic News Network.

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

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"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.

"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.

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.

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.

"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. 

"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."

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.

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. Grewal, director 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. 

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.

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."

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."

Related articles

• Mayo Clinic researchers lead transformative shift toward neurorestorative treatment strategies for most severe forms of epilepsy
• Epilepsy Treatment
• Minimally invasive epilepsy treatment
• Mayo Clinic Minute: Demystifying epilepsy
• Epilepsy Surgery
• Laser ablation surgery helps treat young man’s epilepsy

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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."

The post Honoring a young girl’s love of nature on her final day appeared first on Mayo Clinic News Network.

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

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"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

"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.

"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

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 pressure, shortness 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.

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.

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• Heart Transplant Innovation: New ‘heart in a box’ technology provides gift of life to Arizona man, as couple prepares to celebrate 50-year anniversary

The post (VIDEO) Country rap musician Colt Ford shares his personal story of surviving a near-fatal heart attack appeared first on Mayo Clinic News Network.

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:

• Ty Diwan, M.D., a transplant surgeon at Mayo Clinic in Rochester
• Carrie Jadlowiec, M.D., a transplant surgeon at Mayo Clinic in Arizona
• Shennen Mao, M.D., a transplant surgeon at Mayo Clinic in Florida

###

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.

Media contact:

• Heather Carlson Kehren, Mayo Clinic Communications, newsbureau@mayo.edu

Additional resources:

• Mayo Clinic Minute: What to expect as a living kidney donor

The post Experts bust 5 myths about living kidney donation appeared first on Mayo Clinic News Network.

At just 19, Angela Bristow's life took an unimaginable turn. A college student with her future ahead of her, she was thrust into a world of MRIs, surgeries and grueling treatments when diagnosed with ependymoma, a cancer that typically affects the brain and spine. In her case, however, the tumor was located near her coccyx — an exceptionally rare location for this type of cancer.

"I'll never forget how difficult the recovery was after that first surgery to remove the tumor," Angela recalls. "I ended up with an infection while still recovering at home with my parents. I tried to go back to college afterward, but being away from my support system made everything so much harder."

Looking back on those early days, she shares, "Doctors didn't know what we were dealing with. I wasn't angry — I just kept going because that's all I could do."

Life regained some normalcy after her initial recovery. She met Chris — her future husband — and started planning a future. But less than a year into their marriage, the cancer returned, this time requiring surgery and 30 days of radiation. Two years later, the disease spread to her pelvic lymph nodes.

This marked a turning point. Angela sought a second opinion at Mayo Clinic, where her care team removed 13 lymph nodes, sparing her from further therapies. "Mayo became my anchor," she says. "For the first time, I felt like I wasn't fighting this alone."

Over the next two decades, Angela’s life became a cycle of surgeries, treatments and recoveries, as tumors returned every two years. Yet, she found strength in her "dream team" at Mayo Clinic, including her palliative care team, who are dedicated to easing suffering by managing symptoms associated with serious illness. Beyond medical care, they provide compassionate support to patients and their loved ones during life's most trying moments.

"I have the distinct privilege of supporting Angela as she navigates the challenges of living with cancer," Dr. Liz Sokolowski, Angela’s palliative care physician, says. "From our first meeting, I was deeply moved by her resilience and strength, and how she continues to maintain hope and her sense of humor. Patients like Angela are true heroes. They teach us daily about courage, and they remind us why we do this work."

Advances in treatment provided new hope. What began with surgeries and radiation evolved into cryoablation, thermal ablation and, more recently, oral chemotherapy. Even when the cancer metastasized to her lungs a decade ago, Angela faced each recurrence with determination, balancing the fear of the unknown with acceptance. "Cancer doesn't own me," she affirms. "It's part of my story but not the whole story. I'm still learning, still growing and still fighting. There's a reason I'm here."

Angela's journey is one of resilience, self-advocacy and profound partnership — with her care team and her family. Chris has been her unwavering support, whether staying overnight in hospital chairs or managing wound care. Their daughter, now a teenager, has grown up witnessing her mother's courage. "She was just 3 months old when she stayed in my hospital room. She's my light, and Chris is my rock."

Now, at 48, Angela speaks with heartfelt wisdom.

"I wish I could tell my 19-year-old self it will be OK. Cancer doesn't define life; it's just a part of it," Angela says. For those walking a similar path, she offers this advice: "Advocate for yourself, build a trusted care team, and don’t let cancer take more than it has to. You are stronger than you think."

Tips for navigating long-term cancer care

Managing cancer can feel overwhelming, but with the right tools and mindset, balance and strength are possible. Whether you're newly diagnosed, in treatment or in remission, here are Angela's practical tips:

1. Stay proactive with checkups.
   Maintain regular checkups with your healthcare team, even in remission. Work with your healthcare professional to set a personalized schedule for follow-ups and tests. Many hospitals offer apps or portals to help manage appointments and stay on top of your care.
2. Explore integrative therapies.
   Cancer care extends beyond medical treatment. Services like acupuncture, meditation or aromatherapy can help manage side effects and improve well-being. Ask your care team about available options.
3. Build a support network.
   A strong support system can make all the difference. Lean on family, friends or support groups to stay connected. If in-person groups feel daunting, consider online options or platforms like CaringBridge for sharing updates and receiving support.
4. Consider clinical trials.
   Clinical trials can offer access to innovative treatments and contribute to advancing cancer care. For patients with rare cancers like ependymoma, organizations like Collaborative Ependymoma Research Network (CERN) provide valuable resources and information about ongoing trials. Speak with your oncologist to explore research organizations that may help guide your treatment options.
5. Tap into health resources.
   Cancer education centers often provide free workshops, nutrition guidance and creative outlets like art therapy. These resources can keep you informed and engaged in your care.
6. Care for your emotional health.
   Therapy offers a safe space to process emotions and build coping strategies. If traditional therapy isn't for you, mindfulness practices like deep breathing or meditation can reduce stress. Activities like a walk in the park, a lunch outing or a favorite hobby also can lift your spirits.
7. Personalize your journey.
   Cancer is deeply personal, affecting everyone differently. Begin with one or two strategies that feel right for you, and gradually explore more as you're ready. Small, intentional steps can help you build a meaningful and well-supported life.

Angela's story is a reminder that while cancer may shape your path, it doesn't define your destination.

"No matter what, there is always more life to live, more love to give and more reasons to keep fighting," Angela says.

The post Living beyond diagnosis: Angela’s 30-year journey with ependymoma cancer appeared first on Mayo Clinic News Network.

There is new hope in the fight against glioblastoma, the deadliest and most aggressive form of primary brain cancer.

Currently there is no cure, but results of a new study conducted at Mayo Clinic show patients experienced improved overall survival while maintaining quality of life after undergoing a novel approach to treatment.

Watch: Breakthrough in the fight against glioblastoma

Journalists: Broadcast-quality video (2:45) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

Richard Casper was one of the study participants. The Arizona man enrolled in the clinical trial at Mayo Clinic in Phoenix after his diagnosis of glioblastoma in 2019. Richard was given only months to live, but his family says thanks to his strength, perseverance, and innovative medical care, he survived nearly double the amount of time.

"To be almost two and a half, three years in after being told you only have a few months, it's quite remarkable," says Susan Casper, Richard's daughter.

Richard succumbed to the disease in 2023. During the treatment, his family says he had little to no side effects. In the months before his passing, Richard stated, "I feel great. If someone didn't tell me I have the glioblastoma, I wouldn't even know it."

The clinical trial was led by Dr. Sujay Vora, a radiation oncologist at Mayo Clinic in Arizona. The small, single-arm study incorporated the use of advanced imaging technology combined with cutting-edge radiation therapy in patients over the age of 65 with newly diagnosed World Health Organization (WHO) grade 4 malignant glioblastoma.

"The patients lived longer than we expected. This patient population is expected to live six to nine months. Our average survival was 13.1 months. There were some patients that were out closer to two years. The results exceeded our expectations. We are very pleased," says Dr. Vora.

The study is published in The Lancet Oncology.

Why is glioblastoma so deadly?

Glioblastoma is among the most challenging cancers to treat. The disease is aggressive and invades healthy brain tissue with hairlike tentacles. "That is why doing a complete surgery is very difficult, as compared to say breast cancer, where a lumpectomy can be performed to remove not only the tumor, but a healthy rim of tissue around it," explains Dr. Vora.

Surgery for glioblastoma presents a different set of obstacles. "When it comes to glioblastoma, it is challenging to do that level of surgery. You try to surgically remove whatever you can safely without leaving the patient worse off after surgery."

Another factor that makes glioblastoma so lethal is that it can be fast- growing and unresponsive to treatment.

"These cancer cells are quite challenging to overcome," says Dr. Vora. "There are some patients we see after their surgery, and by the time we are ready to start their treatment, they've already had a recurrence of the disease."

An estimated 14,500 people will be diagnosed with glioblastoma in the U.S this year. "In the best of circumstances the average survival rates are in the 14-15 month range. But for patients 65 and older, the group that was the focus of our study, patients do even worse. The prognosis for this population is between six and nine months," says Dr. Vora.

Symptoms of glioblastoma

• Headache
• Nausea and vomiting
• Confusion or decline in brain function
• Memory loss
• Personality changes
• Vision changes
• Speech difficulties
• Trouble with balance
• Muscle weakness
• Seizures

Attacking glioblastoma with a triad

For the clinical trial, Dr. Vora and his team mapped out a plan that would allow them to be more intentional and precise with treating the location of the glioblastoma.

The imaging incorporated the use of ¹⁸F-DOPA PET and contrast-enhanced MRI. "¹⁸F-DOPA PET is an amino acid tracer that can cross the blood brain barrier, and it can accumulate within the glioblastoma cells itself," says Dr. Vora.

Researchers combined these images to determine the location of the most metabolically active "hot spots" of the cancer in the brain.

Taking aim with proton beam therapy

Study investigators used one of the most advanced forms of radiation treatment, called proton beam therapy.

"With standard radiation, the beams go through the brain tissue, so there's an entrance dose and the exit dose. But with proton beam therapy, we dial up how deeply we want the radiation to go," explains Dr. Vora. "It drops off its energy in the tumor, and then there's basically no radiation after that. It allows us to be more preferential into the delivery of radiation and protect more of the healthy surrounding tissue."

During proton beam therapy, a patient lies on a table while the machine rotates around the patient's head targeting the tumor with an invisible beam. The patient is awake for the procedure. It is painless with many patients reporting fewer to no side effects.

Unlike traditional radiation for glioblastoma, which is typically delivered over the course of three to six weeks, treatment with proton beam therapy for the study was conducted in one to two weeks.

"I am hopeful that this is the first step of many where we can continue to move the needle and allow patients to live longer and live well," says Dr. Vora. "The goal is to improve the outcomes for our patients allowing them to spend more time with their families."

Nadya's story

2022 was a tough year for Nadya El-Afandi. She was on the verge of celebrating a long but successful battle with breast cancer.

"Out of the blue, I had a seizure. I went to the hospital, they did an MRI. After additional tests they told me the news: 'You have a glioblastoma,'" recalls Nadya. She asked her doctor if she should continue her breast cancer treatment. "He said, 'No'-meaning the glioblastoma would kill me before the breast cancer."

Nadya was not about to give up.

Nadya is a wife and mother of four children. She lives just outside of Rochester, Minnesota. "My children said to me, 'Mom, you're a unicorn. Of course you'll live.' My mother has had a number of medical conditions and we never expected her to live this long. And she's still alive and with us," says Nadya. "My children have also said, 'You've got grandma's blood in you. You will live.'"

Nadya is receiving care at Mayo Clinic in Rochester. That's where she learned about a new clinical trial called SAGA, or stereotactic ablative radiation treatment for glioblastoma. The phase 2 clinical trial is building upon Dr. Vora's research and studying a larger group of patients. The study is being led by Dr. William Breen, radiation oncologist at Mayo Clinic in Rochester.

It has been 15 months since Nadya began treatment for glioblastoma. So far, there is no sign the glioblastoma has returned. "Nadya has already exceeded the time that's expected time to have a tumor recurrence, and she continues to do well," says Dr. Breen. "Nadya is beyond some measures of what the average, overall survival time would be."

While Nadya's progress in encouraging, Dr. Breen says it is important to note that it is too early to draw any conclusions about safety or efficacy of this approach to treatment until the study is completed.

Meanwhile, Nadya is focused on living her life to the fullest. Fifteen months after undergoing treatment, Nadya embarked on an adventure to Hawaii, where she spent time taking helicopter tours, snorkeling and hiking.

Related articles

• Breakthrough in treatment approach showing promise in the fight against glioblastoma, the deadliest and most aggressive type of brain cancer
• (VIDEO) Focus on hope: Brescia’s Story
• All-Star pitcher Liam Hendriks shares how he closed out cancer at Mayo Clinic in Arizona
• Cancer is tough. Evelyn Owens is tougher
• https://cancerblog.mayoclinic.org/2021/12/21/glioblastoma-in-older-adults-improving-survival-and-quality-of-life/
• https://cancerblog.mayoclinic.org/2024/05/15/technology-clinical-trials-offer-hope-after-glioma-diagnosis/

The post (VIDEO) Breakthrough in the fight against glioblastoma appeared first on Mayo Clinic News Network.

Joshua Abelson, a 63-year-old aviation sales and supply chain professional, has faced numerous health challenges with remarkable resilience. Originally from Fort Worth, Texas, Joshua now resides in Jacksonville, Florida, where he continues to inspire others with his story.

Joshua's transplant journey began in 2009 when he first noticed symptoms that led to a diagnosis of interstitial lung disease (ILD), specifically pulmonary fibrosis, after numerous X-rays and scans. This diagnosis marked the start of a long and arduous battle with his health.

After his initial diagnosis, Joshua says, "Nothing really changed, and I was living my normal life, traveling the world for business, playing golf regularly and taking my wife dancing."

In 2016, Joshua experienced a spontaneous pneumothorax in his left lung, which required a 10-day hospital stay to reinflate and stabilize his lung. The incident was a significant setback, but Joshua's determination never wavered. "After that, I resumed my normal activities again," he says.

Early 2020 brought another challenge when Joshua and several colleagues fell ill after a business trip to China. "I got sick, and while we weren't testing for COVID-19 yet, I believe I may have had it," he says. The illness further compromised his already fragile lungs. "After that, my lung function began decreasing, and I found I could not fly without supplemental oxygen," he says.

In mid-2021, Joshua suffered a gallbladder attack and was hospitalized again. During this time, he was diagnosed with COVID-19, which further deteriorated his lung function, leading him to regularly rely on portable oxygen.

Despite those setbacks, Joshua and his wife moved to Jacksonville in late November 2023 for work. However, during a holiday visit to Texas in December 2023, he contracted pneumonia and spent several days in a Texas hospital.

Upon arriving back to Jacksonville, he made the decision to seek care at Mayo Clinic in Florida. "Living in Jacksonville, we knew we had two potential choices," says Joshua. "After doing our research and praying about it, we chose Mayo. I had my initial consultations. Everyone agreed I was a candidate, and the evaluation process started." After a thorough evaluation, he was added to the lung transplant waitlist.

"We feel that a patient's quality of life will improve significantly after transplant," says Dr. Maher Baz, division chair of Lung Failure and Transplantation at Mayo Clinic in Florida. "Because they're no longer on oxygen, they can be out and about, they can walk farther, they can go vacations and improve their survival."

Joshua received his lung transplant in August 2024. The lungs he received underwent ex vivo lung perfusion (EVLP) technology in which donor lungs are flushed and ventilated while being monitored in isolation. This process allows transplant programs to reevaluate lungs that would otherwise have been discarded. In collaboration with United Therapeutics, Mayo Clinic in Florida introduced EVLP to its campus in 2019.

"We have something called ex vivo lung perfusion, or EVLP," says Dr. Baz. "It is a setup where we put the donated lungs on a breathing machine and we circulate fluid in them. We test them for about three to four hours to make sure that they are good lungs. And that has increased our yield for transplantation. The benefit to the patient is a shorter waiting time because now we are identifying organs at a higher rate by using EVLP."

Today, Joshua's health has improved, and he dedicates his time to promoting organ donation awareness and supporting others on similar transplant journeys. "I feel great, and I am incredibly blessed," says Joshua. "I am in an international Facebook support group for patients and caregivers, so I have heard many stories of people who have had, and continue to have, issues from their transplant, meds and underlying conditions. I have not had any setbacks at this point. I think it's important to stress the need for prehab and rehab. Mayo provided a great opportunity for me to do both, which got me in the best shape possible before my transplant and made my recovery easier."

His story is a testament to the power of resilience and the importance of organ donation. Joshua's journey continues to inspire and offer hope to others facing similar health challenges. "I contacted Donate Life Florida and have now become a registered volunteer to promote organ donation awareness," he says.

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A 30-year-old Michigan man can smell, swallow, blink and smile for the first time in a decade thanks to a face transplant at Mayo Clinic.

In the last 20 years, just a little more than 50 face transplants have been performed worldwide. This is the second face transplant completed at Mayo Clinic.

For Derek Pfaff, the transformational surgery has been life-changing.

Watch: Derek Pfaff's story

Journalists: Broadcast-quality video (6:32) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

On the shore of Lake Huron in a small town with just one traffic light, everybody knows everybody in Harbor Beach, Michigan. A decade ago, the face of Derek Pfaff was well-known in this tight-knit community.

"He was kind of that hometown hero," says Lisa Pfaff, Derek's mother.

The son of Jerry and Lisa Pfaff, Derek was a straight-A student and captain and star running back on the school's only state championship football team.

On the night of March 5, 2014, Derek, then 19, was home from college on spring break when he decided to take his own life.

"I looked across, and the gun cabinet was open … I just … my heart dropped," says Jerry Pfaff, Derek's father.

"He does not remember getting the gun. He does not remember going outside. He does not remember shooting himself," says Lisa. "We met with the doctors, and they told us that there was no way Derek was going to make it."

But Derek did survive. "It's a miracle he lived," Lisa says.

However, most of his face was gone.

"I should have died that night. I'm thankful to be alive," Derek says.

Thankful to be alive, but after 10 years and 58 reconstructive surgeries, what remains of Derek's face is unrecognizable. He has only one eye and is unable to blink. He struggles with speaking and breathing normally, and no longer has a sense of smell. He can't chew or swallow food, and uses a feeding tube to eat.

"After my last surgery, the doctor told my parents that there's nothing more he could do except refer us to a place to get a face transplant," Derek says.

Ultimately, that place would be Mayo Clinic in Rochester, Minnesota.

"The thought of this surgery is our ray of hope," Lisa says.

"Life-changing for him," Jerry says.

It's a second chance at life for Derek.

"The heart is a lifesaving operation. The kidney, for the most part, is a lifesaving operation. With facial transplantation, it's a life-giving operation. You can live without it, but you're missing out on life," says Dr. Samir Mardini, surgical director of Mayo Clinic's Reconstructive Transplant Program. "Face transplant is a rare surgery. There are only a few teams around the world that are doing them."

Derek's surgery is Mayo Clinic's second face transplant and its most complex and extensive procedure to date. A face transplant replaces all or part of the face with donor tissue. Dr. Mardini estimates 85% of Derek's face needed to be replaced.

"In Derek's case, the donor tissue included part of the forehead, the upper and lower eyelids on the right side, the nose, the mouth, the upper and lower jaws — including the teeth — as well as all of the skin, muscles and nerves of the entire face and neck," says Dr. Mardini.

The most meticulous part of this complex surgery is reconnecting the many small nerves between Derek and the donor to ensure function, like eating, blinking and even smiling, is restored.

In extensive preparation for Derek's surgery, the face transplant team spent nearly nine months, including many weekends, rehearsing the procedure. Detailed scans of the face allowed the team to practice the surgery virtually. The latest technology in medical modeling and 3D printing also played a vital role in the planning and execution of the surgery.

"The restorative nature of the facial transplant makes it very complex," says Dr. Mardini.

In February 2024, a donor becomes available. Six surgeons and a multidisciplinary medical staff numbering more than 80 complete a surgical marathon lasting nearly two and a half days.

"We're trying to give Derek back functions he was missing for 10 years," says Dr. Mardini.

Still healing nearly a month after surgery — and 10 years to the day of his suicide attempt — Derek gets the first glimpse of his new face. In the months to follow, Derek has additional surgeries to refine his appearance, improve his tongue and eyelid function, and ensure the connection of nerves is working properly.

"This is not an aesthetic operation, although the side benefits of it are hugely beneficial for the aesthetics of the patient," says Dr. Mardini. "Derek is looking to be normal. He's looking to walk on the street and not have anyone notice anything on him."

As he approaches a new year in 2025, Derek is just another face in the crowd now — with a new smile.

"It makes my heart so full to see him smile and happy and just be a normal person again," Lisa says.

"It's been 10 years since you've seen a nose, lips and teeth on your son — just totally amazing, a miracle," Jerry says.

"It wasn't just Derek's face that was given. It was his other organs as well. So there were multiple recipients tied to that one donor, and that is the greatest gift that someone can make the courage and the decision to do," Lisa says.

Because of that donor's gift, Derek, now 30 years old, is ready to start the next chapter in his life.

"One day, meet someone, start a family," Derek says.

And he has found purpose as a public speaker for suicide prevention.

"Talk to someone. Tell them how you're feeling," Derek says.

"He's received so many letters that it's kind of like his calling now to continue to impact people and share," Lisa says.

"Hearing their stories and how I helped them, makes me feel pretty good," Derek says. "I lived for a reason. I want to help others anyway I can."

Related content:

• Mayo Clinic performs successful face transplant, restoring vital functions for Michigan man
• Transforming a life: Mayo Clinic announces its first face transplant
• Mayo’s first face transplant patient meets donor’s family

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