A Promise Delivered: A New Heart for a New Mom

Promise Garell grew up with a congenital heart defect. She was born with transposition of the great arteries, where her heart vessels and her heart were not correctly transfigured, preventing her heart from providing adequate blood flow to the rest of her body. Her first surgery to address this was at 3 days old. Throughout her formative years, she says her childhood was normal. She was active and even played sports. 

"I was fine until I was probably 8 years old, when the symptoms started," says Promise. "At the time, I was having signs of a heart attack, but it was because my troponin levels were elevated. This would happen sporadically when I was working out or playing softball." 

It would be another seven years before Promise would receive open-heart surgery to address these issues. "I think I was 15, and finally, after about seven years of having these issues and being in and out of the emergency room undergoing constant testing, I received an invasive procedure that lasted about 5 ½ hours," says Promise. "Luckily, after that surgery, I was pretty healthy." 

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A Perfect Match: AI’s Role in Kataliya’s Heart Transplant Journey

For Kataliya, AI was more than just a technology — it was a lifeline.

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In 2020, she married her husband, Andrew, who serves in the Navy. By early 2022 at age 24, Promise received the exciting news that their family was growing. She was expecting their first child. About six months into her pregnancy, she began to struggle. The toll of carrying a growing baby led to complications during her pregnancy, including congestive heart failure. 

"I was fine for the first couple of months, and then the third trimester came, and my body could not handle the fluid shifts," says Promise. "Due to that, I ended up in cardiogenic shock, which is pretty much where your whole body is just shutting down because your heart is no longer perfusing like it's supposed to." 

Promise's son, Paxton, was born 11 weeks early in June. He spent two months in a neonatal intensive care unit. Throughout this time, Promise's health continued to decline due to heart failure. She would spend time in and out of several hospitals as teams tried to determine the best course for her care. Ultimately, Promise and her family made the decision to transfer her care to Mayo Clinic. 

New Heart, New Lease on Life 

In early September 2022, Promise arrived at Mayo Clinic in Florida. She says that throughout her life she always kept Mayo Clinic in the back of her mind as one of the top healthcare institutions she would use in the event of an emergency. 

"As a congenital heart defect patient or someone with lifelong heart issues, you always keep in mind the right places to go just in case something happens," says Promise. "And luckily, it worked in my favor." 

Thanks to a timely military transfer, stationing her husband at Naval Air Station Jacksonville, Promise was now close enough to the healthcare institution she often thought about throughout her health journey. "The Navy definitely got us where we needed to be at the right time," says Promise. 

Doctors immediately knew Promise needed to be transferred to the ICU, where temporary pumps and medication helped keep her alive until her care team could figure out if she was a candidate for a transplant and if she would survive one. 

"When we met Promise for the first time, we realized she was probably one of the sickest patients that we would encounter," says Rohan Goswami, M.D., a transplant cardiologist at Mayo Clinic. "It was clear within minutes of seeing her she was going to need to be transferred to the ICU. We had a new mother really working to survive to take care of her family." 

Two days after arriving, she was added to the heart transplant waitlist. 

"I knew the doctors were going to do what they needed to get me on the list, to get me a heart," says Promise. "I think them knowing that I had a 3-month-old son was just as much a motivation for them as it was for me." 

Seeking a plan on how to transplant Promise's heart, the team needed more information about the vessels in her heart. "We needed to have a game plan for how we were going to take the heart out, what type of heart we were going to accept, and how we were going to implant it," says Parag Patel, M.D., a transplant cardiologist at Mayo Clinic. 

3D technology emerged as the solution. Given the complexity of her situation, surgery would not have been possible without a 3D rendering for planning. The 3D team received the request from Promise's transplant team, and within 24 hours, they were able to research, design and deliver. 

"Through a multidisciplinary fashion with our heart transplant team, critical care team, cardiothoracic team and cardiac anesthesia, we were able to work together to find out what things would prevent us from being successful with her care," says Dr. Patel. "It became very evident that in order to optimize her care, we needed to know what we were getting into, how her heart position was actually related to her chest wall, and how her vessels were within her chest. So we reached out to our 3D printing team and our 3D reconstruction team and asked them to reconstruct Promise's heart."  

The 3D renderings helped the team to quickly establish a game plan. The surgeons were able to reference the model in the operating room even as they performed her procedure. 

When listed for her transplant, Promise's team decided to employ a strategy for a donation after cardiac death heart using ex vivo perfusion, also known as "heart in a box." This allowed the heart to beat while being transported from the donor center and thereby allowed physicians to monitor the donor heart closely to ensure it was stable before the transplant.  

Her doctors say both hearts — her "original" heart and the donor's heart — were beating simultaneously in the same room prior to the start of the procedure. Organ perfusion systems, such as "heart in a box," have allowed for increased use of donation after cardiac death, where the heart stops beating. Once the heart is reanimated, the function of the organ is assessed for transplant. The system allows the organ to stay warm and metabolically active, extending the time between retrieval and transplant by several hours. 

Promise's new heart came from a hepatitis C-positive donor. In an effort to expand donor pools, organs that previously would have been discarded are now saving more lives thanks to a new generation of highly effective antiviral medications that allow for safe transplantation. After the transplant, patients begin antiviral treatment that will eliminate the virus. 

"Because of the collaborative approach and high level of communication with each of the members of our multidisciplinary team, we were able to take separate pieces of technology and cater our therapies and tailor it for Promise," says Dr. Patel. "The biggest thing to understand is when we have technology, it provides us more knowledge than what we had a year ago. And taking that technology and taking that knowledge is imperative for us to identify, No. 1, how can we do better for our patients? And No. 2, how can we prevent problems for our patients? And most importantly, how can we do things now that we could not do a year or two ago?" 

Promise’s New Heart 

Promise received her new heart on Sept. 15, 2022. She has since celebrated many milestones, including her son's first birthday, her 25th birthday and her first transplant anniversary. 

"When you come to Mayo Clinic, they care," says Promise. "They want to make you better. They will do whatever it takes to make you healthy, and I am forever grateful for that. Being on that table as a new mom, as a wife, a daughter, I think the biggest thought was I had to pull through this surgery for my son — if not for myself, my husband, my mom and my brother — for my son. My son needed me." 

This article was originally published in Mayo Clinic News Network.

The post A Promise Delivered: A New Heart for a New Mom appeared first on Mayo Clinic Magazine.

Falling behind her siblings was an early sign of the condition that would soon shape her life. "I remember running after my brothers and I couldn't keep up. Then I would turn blue,” she says. 

Unfortunately, she wasn’t the only one in her family with heart problems. By her early teens, Kataliya experienced the devastating death of her younger sister, who passed away suddenly from a heart condition — a loss that underscored the urgency of Kataliya's own. From then on, her life became one of medications and caution, aimed at keeping her alive. 

Despite these efforts, Kataliya’s health began to decline in 2020. "I felt like I was suffocating," she recalls. That led her to Mayo Clinic, where she worked with transplant cardiologist Rohan Goswami, M.D., to find a lasting solution. 

Defying the Odds 

Kataliya had a difficult journey ahead of her. According to Dr. Goswami, the challenge in her case was twofold. First, she had a specific heart condition, hypertrophic cardiomyopathy, that elevated the risks associated with using any support devices. Additionally, she had a high level of antibodies in her bloodstream, further complicating her situation. 

“I came in at 97% antibodies, which means my systems would fight 97 out of 100 hearts,” Kataliya says. “Basically, I had a very small chance they could find a match [for a transplant]. How could they find that one heart of millions that I would not reject?” 

The Future of AI and Transplants 

Artificial intelligence (AI) is emerging as a powerful ally in organ transplantation, paving the way for safer and more effective outcomes. "It takes lots of patients over lots of treatment pathways and helps us identify the best one for the person sitting in front of me,” Dr. Goswami says.

Kataliya’s case is a prime example. According to Dr. Goswami, AI added a new dimension in helping her medical team understand her risks and gauge her potential for a successful match before her transplant. But that’s only scratching the surface of AI’s transformative role in transplantation. 

"I think organ matching, patient survival and also looking at the ability to predict who's a high-risk or a low-risk patient are going to change the landscape of transplant in the next couple of years,” says Dr. Goswami. 

At Mayo Clinic, research is already underway to explore the full potential of AI’s capabilities in transplantation. Dr. Goswami explains that advanced algorithms are helping researchers “understand and identify the factors that may be playing a more significant role in a patient's risk for infection, cancer or rejection” — insights that extend far beyond the traditional models clinicians have relied on for over 20 years. 

"We are using AI to redefine our understanding of chronic disease, potentially preventing the need for organ replacement therapy altogether,” he says. 

Living Life Out Loud 

On June 6, 2023, Kataliya got her perfect match. 

After receiving her life-changing transplant, she could, as she puts it, finally start "living life out loud." She even began running — an achievement that had previously seemed completely out of reach. "It feels very powerful," she says. 

We are using AI to redefine our understanding of chronic disease, potentially preventing the need for organ replacement therapy altogether.

— Rohan Goswami, M.D.

For Kataliya, AI was more than just a technology — it was a lifeline. Thanks to the power of AI and her team's experience, she’s living a life she once thought impossible. And for the future of transplant patients, AI offers the hope of a similar second chance.

The post A Perfect Match: AI’s Role in Kataliya’s Heart Transplant Journey appeared first on Mayo Clinic Magazine.

Time Is Brain

In stroke care, time is brain.

From the moment a stroke begins until clinicians have restored normal blood flow in the brain, the clock is ticking. Every minute can mean the death of millions of neurons — our brain’s fragile, critical cells that control our every function. But it takes time to determine if a patient is experiencing a stroke and, if so, what kind of stroke they are having, before any treatment can be given. When it comes to improving stroke care, anything that can speed up the process of identifying and addressing the condition can have an enormous impact on patient recovery.

Enter: Artificial intelligence (AI). At Mayo Clinic, clinicians are using AI algorithms to speed up stroke detection and diagnosis and coordinate care teams to get patients the treatment they need sooner, saving millions of brain cells and improving patient outcomes.

A Ticking Clock

For Sophia Chan, that clock started ticking at approximately 2:05 on a Thursday afternoon in February 2022. It was just another day at her high-pressure job as a television producer when she began to experience a severe headache.

She explains that she doesn’t remember what happened that day — she only knows what she’s heard from her husband and the first responders. “Normally I would just go lie down for a bit and hope for the headache to go away,” Sophia says. “Apparently that day I did end up calling for help, and that’s what saved my life.”

By the time the first responders arrived just minutes later, she was unresponsive. She’d suffered a brain aneurysm while she was home alone. She was transported to Mayo Clinic in Jacksonville, just 15 minutes away.

While Sophia can’t remember anything from that day, her husband, Bobby Cullen, remembers it all in vivid, painful detail, recalling how he spoke to her just hours before a neighbor texted to ask about the ambulances outside their house.

He had been out of town for work, and it took him five hours to get back home. By the time he arrived, Sophia had already been in and out of surgery, and her status was still so tenuous that he wasn’t allowed into her room. He was finally allowed to see her in the earliest hours of the morning, when a clinician told him that it was time to say goodbye — Sophia wasn’t expected to survive for much longer. “I stood by her head for the next eight hours,” Bobby says. “The doctors tried to tell me to sit down, but I told them I wouldn’t sit down until she’d taken her last breath.”

Those eight hours turned into 36 hours, then 72. “On day 7, one of the doctors told me that I should go home and take care of myself,” says Bobby. Sophia continued to beat the odds, but she wasn’t out of the woods. It took almost three weeks for her care team to fully stabilize her condition. She can’t remember anything that happened during the first 21 days of her hospitalization.

Accelerating Diagnosis and Intervention

William Freeman, M.D., is focused on developing systems to better recognize and treat hemorrhagic strokes like Sophia’s, which are less common but often more debilitating than ischemic strokes. This is because ischemic strokes are the result of a blocked blood vessel, which leads to brain tissue injury as the cells are deprived of oxygen. Hemorrhagic strokes, caused by a ruptured blood vessel, result in rapid tissue damage as blood pools and increases pressure in the brain.

The treatments for the two types of strokes are different. Treatment for an ischemic stroke involves breaking up the blood clot, either with a medication or mechanically, so the blood can flow again. Hemorrhagic strokes are treated by providing medications to reverse any blood thinners the patient may be on, stop the bleeding, and relieve pressure on the brain to reduce tissue damage.

Knowing which kind of stroke a person is having is very important for choosing the right treatment. The wrong treatment could make a patient’s condition worse.

With the help of AI, a process that once could take half an hour or longer can now take just seconds. When a patient enters the emergency department with a suspected stroke, the first critical step is getting them a CT scan, generating detailed images of the patient’s brain using X-rays. Technicians then review the images looking for abnormalities in the brain to determine the location of the stroke and what type of stroke it is.

Now, an AI algorithm trained on a database of CT images from patients who have had strokes can rapidly scan hundreds of images and pull out the ones showing an abnormality. A technician reviews the relevant images and confirms the algorithm’s assessment. “A full CT and CT angiogram can be up to about 1,200 pictures,” says Dr. Freeman. “And before the software came into play, we’d be looking manually, slice by slice. It seems like it takes an eternity. AI can compress all those minutes down into seconds.”

After diagnosis comes intervention. Once the stroke has been located and clinicians determine its type, a care team is gathered to initiate the appropriate treatment. Dr. Freeman says AI can smooth this process too by sending automated messages to on-call clinicians as soon as a diagnosis is reached.

“Now, I’ll be in the CT control room, and while a technician is still processing the images, my smartphone pops up with a notification telling me that it’s go time,” he says. “It’s really a sight to behold.”

42 Million Neurons Saved With AI Intervention

30 MINUTES

Patient experiences ischemic stroke symptoms, such as slurred speech, numbness or weakness on one side of the body, or a sudden severe headache.

+20 MINUTES

EMT services are called for the patient, and patient is transported to hospital by EMTs.

+10 MINUTES

Patient arrives at hospital and is triaged in the emergency department. Care team suspects a stroke, and the patient is sent for a CT scan.

+10 MINUTES

Patient undergoes CT scan, and images are sent for review.

WITHOUT AI INTERVENTION

+25 MINUTES

CT images are manually reviewed by a technician to identify the stroke site and type. Care team is gathered to provide treatment. Patient receives treatment for stroke and begins the recovery process.

TOTAL TIME: 95 MINUTES

TOTAL NEURONS LOST: 180.5 MILLION

WITH AI INTERVENTION

+3 MINUTES

CT images are run through AI algorithm to identify stroke site and type. AI system alerts care team and directs them to the patient for treatment. Patient receives treatment for stroke and begins the recovery process.

TOTAL TIME: 73 MINUTES

TOTAL NEURONS LOST: 138.7 MILLION

The Difference a Minute Can Make

While AI tools have been well studied in ischemic stroke, they are less developed for use with hemorrhagic stroke, and that’s what Dr. Freeman wants to change.

“In a hemorrhagic stroke, patients get super sick, super fast,” he explains. “We estimate that patients lose between 6 million and 8 million brain cells per minute in just the first two hours. AI can help get patients out of the waiting room and into treatment much faster.”

Research has found that integrating AI into care for an ischemic stroke can save an average of about 22 minutes. With an estimated 1.9 million neurons lost during every minute of an ischemic stroke, this adds up to about 42 million neurons saved. With even more neurons lost per minute in hemorrhagic stroke, saving even just 10 minutes could have a dramatic impact on a patient’s recovery.

This technology, along with training and teamwork, is already having an impact in the clinic. “With AI implementation, we’re absolutely seeing a difference,” says Kacie Brewer, P.A.-C., who is a member of Sophia’s care team. “It’s getting patients the care they need faster by speeding up the diagnosis and pulling together the right team as quickly as possible.”

Sophia is acutely aware of the importance of those 10 minutes. Her proximity to Mayo Clinic and the AI algorithms that allowed the care team to find her aneurysm in minutes are likely the keys to her remarkable recovery. “I feel very fortunate to have been near Mayo Clinic,” she says. “The care I received was the best of the best.”

Her treatment at Mayo Clinic did more than just save her life. Many who survive hemorrhagic strokes go on to have significant lifelong disabilities. Two years after her stroke, Sophia is thriving, getting back to her active lifestyle of chasing around her sporty 9-year-old twins and easing into her yoga practice.

The family has moved to California to be closer to family, but still travels back to Jacksonville for follow-up visits.

Sophia’s case is remarkable because it’s still not yet the norm — most patients who suffer a hemorrhagic stroke do not experience a recovery like hers. Dr. Freeman believes that better AI algorithms and implementations, along with other cutting-edge technologies, can change that.

Sophia is now participating in the DISCOVERY study, a clinical trial leveraging Mayo Clinic’s expertise in neurology and neuroimaging to understand the risks of post-stroke cognitive impairment in diverse populations. She hopes that the research can lead to better outcomes for other patients like her.

And, every year, she and Bobby make a special effort to send treats and thank each of the doctors and nurses who provided so much of the care and support their family received during those first few impossible weeks.

“We really believe in Mayo Clinic’s values and mission,” says Bobby. “We could see how all of Sophia’s care was really a group effort, and it saved her life.”

The post Time Is Brain appeared first on Mayo Clinic Magazine.

From the day of her birth in April 2022, Makrii Omot has lived up to that name, amazing her multidisciplinary pediatric care team with her strength and determination.

Discovering Congenital Complications

From the start, Makrii needed those characteristics. At 28 weeks of pregnancy, Swina had an ultrasound that revealed something completely unexpected — abnormalities indicating that Makrii's diaphragm hadn't fully developed. The condition is called congenital diaphragmatic hernia (CDH) and occurs in about 1 in 5,000-8,000 births annually.

The diaphragm is a muscle separating the chest and the abdomen and is the primary muscle for breathing. If the separation isn't complete, organs from the abdomen can move into the chest, press against the lungs and affect their development.

Not only can this condition cause the lungs to be smaller and immature, but it also can lead to pulmonary hypertension, or high blood pressure, in the lungs. Both situations make it difficult for the baby to breathe after delivery and can increase the risk of severe decompensation (organ failure). A baby's chances of surviving with CDH are low unless doctors act quickly to correct the condition.

Creating a Working Diaphragm

After receiving the diagnosis at Mayo Clinic Health System in Austin, Minnesota, Swina and her family moved to Rochester to be closer to Makrii's pediatric care team.

Makrii was born at 36 weeks at Mayo Clinic in Rochester. To help her breathe, she was placed on extracorporeal membrane oxygenation (ECMO) by Cardiovascular Surgery.

At 1 day old, while Makrii was still on ECMO, D. Dean Potter, M.D., a pediatric surgeon, performed the first surgery to correct her CDH. The surgery involved shifting her abdominal organs back into place and covering the large hole (hernia) in her diaphragm with a synthetic patch.

"The hernia is relatively easy to repair, and the recovery for patients is fairly straightforward," says Dr. Potter. "But the real consequences of CDH are its effect on lung development."

Helping Makrii Breathe

For Makrii, those consequences were severe, resulting in tracheobronchomalacia (TBM), an airway disorder of the main bronchial tubes that causes them to be abnormally floppy. Even with sedation and maximum support from a ventilator, Makrii's trachea and airways tended to collapse, causing her oxygen levels and heart rate to drop.

"Makrii was very sick," says pediatric surgeon Stephanie Polites, M.D. "Tracheobronchomalacia can improve over time as the cartilage in the trachea strengthens, but Makrii's condition was so severe, we didn't have time to wait."

For her mom, Swina, and dad, Naney Omot, enduring the ups and downs of Makrii's condition was frightening and draining.

"We got to the point where we thought, 'Just let it be. If God wants her to be alive, she'll live,'" says Swina. "We knew she was in the best place, with the people who had kept her alive since she was born."

Crafting an Unconventional Solution

Dr. Polites quickly pulled together a team of Mayo Clinic experts from several specialties to find a solution for Makrii.

"She faced such tough odds but was so brave that she inspired the team to think outside the box. The surgical procedures that we perform more commonly for tracheomalacia wouldn't have been sufficient," says Dr. Polites.

"The full length of Makrii's trachea was floppy, and the bronchi on both sides were severely affected," says pediatric pulmonologist Paul Boesch, D.O. "Her airway was about the diameter of a pencil, and even providing structural support with an extra-long tracheostomy tube inside her trachea wasn't keeping it from closing."

The multidisciplinary team needed to find a solution that would support an airway segment longer than the trachea, including the bronchial tubes to each lung. They decided one potential option, inserting devices like stents inside the multiple small airways, wouldn't be effective and would cause other problems.

To provide maximum support of the trachea and main bronchial tubes without injuring Makrii's small airways, the team developed a plan to craft a customized external splint, like a partial cast, around the airway. To prevent collapse, they would stitch the trachea to the sternum in the front and the spine in the back.

Dr. Polites' team relied on Mayo Clinic's 3D Anatomic Modeling Laboratory to recreate Makrii's anatomy based on the results of pulmonary imaging. This 3D model allowed the team to better understand what would be needed during surgery.

"Combining these three procedures and the individualized approach to Makrii's complex anatomy made the surgery exceptionally innovative," says Dr. Boesch.

Assembling the Team for Surgery

Splinting of the trachea is a rare procedure performed at only a few hospitals in the U.S. Makrii would be Mayo Clinic’s first pediatric patient to undergo this operation.

On October 13, 2022, everyone was ready. Makrii was placed on ECMO again to support her heart and lungs during the complex surgery.

Dr. Polites molded warmed plates of bioabsorbable material to create the splints and then secured the splints around the front of Makrii’s airways. The splints would maintain the shape of the airways and keep them open, allowing Makrii to breathe easier. The surgery was successful, and Makrii began to improve almost immediately.

Breathing Easier, Growing Stronger

Today, Makrii is at home and doing well. Her parents and grandmother share care duties such as managing her feeding tube and tracheostomy. She is getting stronger every day and reaching developmental milestones. The supportive plates put in during surgery will be absorbed by Makrii's body over time as her airways become stronger.

"It was exciting, yet humbling, to work with such an exceptional team dedicated to getting Makrii better so that she could go home with her family, grow and develop," says Dr. Polites.

Thinking back on her choice of name for Makrii, Swina says, "I'm glad I kept 'Makrii' because she is strong. It matches how she is on the inside, the outside and how she will be as she grows."

This article was originally published in Mayo Clinic News Network.

The post Baby Makrii Breathes Easier After Innovative Airway Surgery appeared first on Mayo Clinic Magazine.

One day on the court in 2022, a seizure dropped 6-foot-8-inch Parker to the floor.

"The next thing I know, I'm lying down in the middle of the basketball court, and there's a stretcher coming to pick me up and [they] drive me to the ER," recalls Parker. "That's when it really hits that, no, we're not just done and out of this. Something really is going on."

That something turned out to be a skull abnormality called an encephalocele, which caused Parker to have seizures.

Three years after his journey with epilepsy started, Parker's seizures are in control, and he's enjoying new responsibilities at his job and shooting hoops again.

If sharing his experience could help someone else find answers, Parker is all in — especially as he's learned that encephaloceles are becoming more recognized as a cause of seizures. "If talking about this can help someone else, absolutely, without question," Parker says.

Re-Review of Imaging

There are distinct types and severities of encephaloceles. Some are present at birth and can be large. One in every 10,400 babies is born with this type of rare, large encephalocele, according to the Centers for Disease Control and Prevention (CDC).

Other encephaloceles, like Parker's, occur after birth when the bony plates of the skull do not fuse together completely during growth, explains Jeffrey Britton, M.D., a Mayo Clinic neurologist. This allows part of the brain to push through small gaps in the skull, producing an encephalocele. These small encephaloceles are typically under a half-inch in size. As a result, they are difficult to detect on MRI scans.

"Their relevance as a seizure cause has been increasingly appreciated in recent years," Dr. Britton says. "The ability to visualize them has increased with technological advances, and our ability to recognize them as clinicians and radiologists is improving."

In a retrospective study analyzing encephalocele cases in patients with epilepsy who underwent surgery from 2008 to 2020, Mayo Clinic researchers reported that the encephaloceles were initially overlooked on MRI in 31 of 34, or 91%, of cases. Expert re-review of patients' imaging as part of Mayo Clinic's weekly multidisciplinary epilepsy surgery conference has significantly improved identification of encephaloceles, says Kelsey Smith, M.D., a Mayo Clinic neurologist and first author of the study published November 2023 in Epilepsy & Behavior.

Drs. Smith and Britton are part of the integrated team of Mayo Clinic neurologists, neuroradiologists, neuropsychologists and neurosurgeons that meets weekly to discuss patient cases and recommend individualized, innovative treatment plans. They review patients' medical histories and look for brain image irregularities that may indicate an encephalocele.

"When you have someone with drug-resistant epilepsy, if you can find a lesion that's the cause of their epilepsy, it really changes the possibilities for the patient's treatment," Dr. Smith says. "That is why looking at imaging closely for abnormalities like encephaloceles is very important."

Since the Mayo Clinic study ended in 2020, the team has found roughly 20 encephaloceles in additional patients with epilepsy, Parker among them. Parker has a scar — shaped like a question mark over his left temple — to prove it.

Seizure Triggers

In May 2021, Parker was a 21-year-old junior at the University of Wisconsin-Stout in Menomonie when he first had a seizure. "I'm hanging out with a buddy, and suddenly he tells me he called an ambulance. He said, 'Dude, you just had a seizure,'" Parker recalls.

With no prior history of seizures, medication might not be started after one seizure. But a month later, Parker had a second. He underwent testing at Mayo Clinic Health System in Eau Claire, Wisconsin, and was prescribed anti-seizure medication.

For over a year, Parker was seizure-free. But after his seizure that day on the basketball court, epilepsy began to rule Parker's life. Following standard treatment, Parker's medication dosage was increased, and another medication was tried. His seizures would be under control and then return.

"It got to a scarily regular basis, where I was having the grand mal seizures about monthly, and then I was having the focal 'zone out' seizures at least weekly," says Parker, despite taking medication diligently.

Dr. Britton describes epilepsy as a temporary electrical short circuit or an electrical storm in the brain. "The one thing that different types of seizures have in common is that they result from a sudden surge in the excitability of the brain," he says.

Dangerous Complications

Epilepsy is common. Worldwide, it's estimated more than 50 million people of all ages have epilepsy, according to the World Health Organization. In the United States, more than 3 million people have epilepsy, according to the CDC. For a third of them, like Parker, medications don't control their seizures.

Dangerous complications can result from seizures — falling, drowning, motor vehicle accidents, dealing with side effects of medications and the mental stress of illness, and even sudden, unexpected death.

Parker fell and hit his head several times during seizures. A woman discovered him on the sidewalk near his office. She called 911 and his parents, thanks to an identification bracelet Parker wears.

Once, after being seizure-free for a few months, Parker crashed his car during a seizure. He shudders to think what would have happened if anyone had been seriously hurt in the accident.

Parker stopped driving. He curtailed his social activities. At work in Eau Claire, he was glad for a desk job — on carpeting — in case he fell.

"I'm not going outside and doing anything else because I just have that shadow in the back of my head," says Parker, offering thanks to his family and friends who gave him rides and support during some frustrating and frightening months.

Finding the Culprit

Parker was hospitalized in Eau Claire to monitor his seizures using an electroencephalogram (EEG), a test that measures electrical activity in the brain using small, metal electrode discs attached to the scalp. Parker's seizures were found to arise from his temporal lobe on the left side of his brain.

At Mayo Clinic in Rochester, Minnesota, that EEG information and Parker's medical history suggested the temporal lobe was the source of his seizures. Identifying the underlying encephalocele involved the use of advanced imaging:

• Fluorodeoxyglucose positron emission tomography (FDG-PET) scan, which indicates how glucose is fueling parts of the brain. Parker's scan showed a specific area of abnormal glucose uptake in the front tip of the left temporal lobe.
• 3D-rendering CT scan, which can enhance visualization of the skull base. Parker's scan revealed a defect in the floor of the left middle of the skull base and the corresponding encephalocele.
• 7T MRI scan, which can reveal subtle brain differences, and is used when the team is highly suspicious that a lesion is present but conventional imaging has not helped.

"The location of Parker's encephalocele had complex, curved anatomy with brain, bone and air close together," says Karl Krecke, M.D., a Mayo Clinic neuroradiologist, describing Parker's roughly half-inch encephalocele.

"When each of these imaging data pieces line up, we feel confident that we have found the culprit, and we can consider options to treat the patient's problem."

Surgery Date Is 'My New Birthday'

Dr. Britton delivered the news to Parker and his parents that an encephalocele likely was causing his seizures, and surgical repair was an option. "It's really a privilege to be in a position where you can be a part of a process that brings clear benefits to an individual patient," Dr. Britton says. "It's what keeps you going."

Jamie Van Gompel, M.D., a Mayo Clinic neurosurgeon, soon met with Parker and his family to discuss the risks and benefits of surgery. Research by the Mayo Clinic team has shown that a more limited surgery is best for a temporal encephalocele on the left side of the brain, which controls speech and memory.

"We went to surgery and were able to remove a small part of the brain tissue that was hurt by the encephalocele," Dr. Van Gompel says. "Parker was amazing, out of the hospital quickly and back to doing what makes Parker, Parker."

After dealing with fear and anxiety caused by his seizures, Parker had a special message for his operating room team before he went under anesthesia for his October 2023 surgery. As he lay on the operating table, he asked to make an announcement before his procedure started.

"Me and my family have gone through the greatest amount of trauma and stress for something that was out of nowhere," Parker recalls telling the team. "And knowing that you guys are the best possibility for me to get my life back, I'm seeing this as my new birthday. So, thank you."

After a recent checkup with Dr. Britton, Parker reiterates the sentiment. "I can't thank them enough. I don't know how else to put it. I've got my life back."

This article was originally published in Mayo Clinic News Network.

The post Patient Returns to Basketball After Seizure Surgery appeared first on Mayo Clinic Magazine.

At only 6 years old, Evelyn was diagnosed with rhabdomyosarcoma, a rare form of childhood cancer. Evelyn's family traveled from their home in Oregon to Mayo Clinic in Arizona where doctors are using cutting-edge technology that's revolutionizing cancer treatment for many patients like her.

Fighting Cancer With a Smile

No matter what life throws at her, Evelyn's parents say she just keeps on smiling. "That's how she looks 99% of the time even if she doesn't feel good," says her mom, Claire Owens. Evelyn's dad agrees. "She's very, very tough," says Austin Owens.

Evelyn's toughness was put to the test when pathology results revealed she had cancer.

"Everybody thought it was a cyst," recalls Claire. "Even after surgery they said it was a cyst, and then the pathology came back as cancer."

Evelyn and her doctor, Safia Ahmed, M.D., (below) and dog, Duke, (right).

What Is Rhabdomyosarcoma?

Additional tests showed the cancer was rhabdomyosarcoma (RMS). RMS begins as a growth of cells in soft tissue, like muscle. It can start anywhere in the body. RMS most often occurs in children younger than the age of 10. Symptoms depend on where the cancer starts and can include lumps under the skin, redness, swelling and pain.

As part of her treatment, Evelyn's doctors recommended radiation with innovative cancer-fighting technology called proton beam therapy. Her family traveled from their home in Oregon to Mayo Clinic in Arizona so Evelyn could receive the cutting-edge therapy.

Receiving Proton Beam Therapy

"Proton therapy allows us to treat the area we need to treat completely while protecting many of the normal tissues nearby," says radiation oncologist Safia Ahmed, M.D. "And for pediatric patients that's very important because all of their tissues are growing."

Proton beam therapy attacks and destroys cancer cells with radiation by targeting the precise location in the body where the cancer is located. "And minimizing radiation dose and radiation dose side effects to these tissues as they are growing is key. It improves their (patients') quality of life," says Dr. Ahmed.

Evelyn underwent 24 treatments of proton beam therapy over six weeks. Her parents say through it all, she stayed tough and positive.

"I can't imagine going through this with anybody else but you," says Austin about his daughter. "You should be the poster child for going through cancer and cancer treatments. I'm so proud of you and love you so much," he adds.

Evelyn is now 7 years old and back home in Oregon with her family. She will still require some chemotherapy treatment. Doctors say her prognosis looks good. Evelyn will undergo regular monitoring to make sure the cancer does not come back.

These days, Evelyn is back to enjoying the things she loves most, like riding ponies with her brother, Henry, and taking her dog, Duke, on walks.

Evelyn's smile is bigger and brighter than ever.

This article was originally published in Mayo Clinic News Network.

The post Cancer Is Tough, Evelyn Owens Is Tougher appeared first on Mayo Clinic Magazine.

Jackie's note of gratitude to her donor family answered many questions. But the one question she couldn’t quite answer after her heart-lung transplant is why. As in, why was she still here? You know, alive?   

To be sure, her faith, friends and family had played integral, meaningful roles. Those people and beliefs raised her hopes and spirits in dark hours. But Jackie's recollection of her medical journey is matter-of-fact.  

"I was in a pretty bad state," Jackie says. 

There had been close calls. Her implanted defibrillator went off six times in one night at her home in Illinois. Another time she contracted a viral illness. The illness caused physicians at Mayo Clinic in Rochester to intubate her for a week.  

"The odds in many of these situations were not good. Many years ago, I heard a cancer survivor say, 'If someone gives you a 10% chance of recovery — be the 10%.' That resonated with me. Someone has to be the 10%."

Tough Start

Jackie was born with a broken heart, a complex congenital heart condition. Jackie’s pediatrician told her parents that Jackie had an enlarged heart. She might not live to be a teenager.   

At 5 months old, she had surgery in Chicago for coarctation — a narrowing of a short section of the aorta. But even from the beginning, Jackie proved much tougher than anyone expected.  

"I'm very competitive," she says. 

At 13 years old, she had a cardiac catheterization. It ensured the surgery was still allowing sufficient blood supply for an adult. She even passed a stress test. It allowed her to play high school sports, including her favorites — basketball and volleyball. 

After college, Jackie took a job with John Deere. She lived in the Mississippi River town of Moline, Illinois. She had stopped seeing a cardiologist on a regular basis because things had been normal.  

When she first started having symptoms that later turned out to be atrial fibrillation, she didn't know they were related to her congenital heart condition. Even her local cardiologist felt it wasn't anything major.  

Her general practice physician concluded her prior cardiac disorder might be the cause for the symptoms. The physician referred Jackie to Mayo Clinic's Adult Congenital Heart Disease group, a part of the Department of Cardiovascular Medicine.  

There, Jackie met cardiologist Heidi M. Connolly, M.D. After a full battery of tests, Jackie got a new diagnosis. 

"I can remember it like it was yesterday," says Jackie of their meeting in 1994. "Dr. Connolly walked in and told me, 'This is not a small problem. This is significant.'" 

Mayo Clinic determined she would someday need a heart-lung transplant. Her heart muscle was stiff, causing pressure to build in her lungs. Mayo Clinic's multidisciplinary team went to work. They wanted to keep Jackie's heart and lungs healthy in order to postpone a transplant as long as possible.  

"We got into a regimen of medication that allowed me to live a very normal, active life," Jackie says. "I continued to see Dr. Connolly at least once every year. But I was able to travel around the world multiple times and continue to progress in my career at John Deere."  

Life was great for Jackie and her husband, Mike. They lived overseas, and John Deere accommodated Jackie's trips back to Mayo Clinic.  

"We had the opportunity to spend New Year's Eve all over the world — one year in Berlin, one year in London, one year in Paris. I went everywhere for work too — Israel, Brazil, China, India. I was so fortunate to get to visit so many places and experience so many different cultures."

A Normal Day

Things changed in April 2020.  

Jackie felt she had come down with food poisoning and ended up going to the emergency room in Moline. She tested negative for COVID-19 but felt awful and ended up in the ICU.  

After Jackie had spent a few days in the hospital, her local physicians felt she had stabilized and sent her home. 

The next night, her defibrillator pacemaker went off again and again. Mayo Clinic, which remotely monitors the implant, called her early the next day. Jackie had no idea the defibrillator had fired six times.  

Both Jackie and her care team agreed she should get to Mayo Clinic right away.  

"That started the first 10 days I spent at Saint Marys. That's when Mayo Clinic determined I had sustained some major damage to my heart," she says. "After all those shocks and you're still around, you get thinking, why am I still here?" 

Joining the Transplant Waiting List

Jackie regained enough strength to return home. But time was running out. Her trips to Mayo Clinic became routine as fluid built up in her body. In February 2021, the transplant registry accepted Jackie onto the waiting list. She was in line for a new heart and lungs.  

In April 2021, while at Mayo for more testing, she fell ill again. This time, she was unable to breathe. Physicians placed her on a ventilator.  

"It was pretty touch and go by this point," says Jackie. "I don't remember much. I was so critical they had to take me off the transplant list. But after seven days, I was off the ventilator and coming back."  

Jackie grew strong enough to return to the transplant list later that month. Six days after returning to the list she received unexpected news — a heart and pair of lungs were available for a transplant. She received her transplant on April 24, 2021. 

"Saying thank you to the donor family does not seem strong enough to express the gratitude I have for their generosity," Jackie says. "Their organ donation allows me to continue to experience life with my family and friends and share my story and my blessings in life."  

Heart-Lung Transplant No. 31

Mayo Clinic is among the few medical institutions in the country that offer heart-lung transplantation. Its campus in Minnesota has performed 43 heart-lung transplants since the program began in 1990. One of them being Jackie’s. 

Jackie received a transplant certificate from Mayo Clinic following her surgery. It includes a number — 31. 

"I'm number 31 in all Mayo Clinic's history for a heart-lung transplant. That puts it in perspective," Jackie says. "If it weren't for Dr. Connolly and the Mayo Clinic transplant care team, I guarantee you I wouldn't have had the career I had or experiences in life I had." 

Even before her transplant, Jackie decided to make a gift to Mayo Clinic for the exemplary care she received over her 25 years as a patient.  

"I thought that was a good idea, to advance the research in cardiac care," Jackie says. "I've benefited so much from the research Mayo Clinic does, the collaboration they have with others and more." 

For their generosity, Mayo Clinic recognizes Jackie and Mike Zachmeyer as Major Benefactors.  

"It's so gratifying that our team-based approach and patient-centered research allowed us to improve Jackie’s life and the lives of many patients like her," Dr. Connolly says. "We are all incredibly grateful to Jackie and Mike for their support of Mayo Clinic enabling us to continue our work and enhance the lives of future patients like Jackie." 

Perspective 

Jackie continues to have routine checkups at Mayo Clinic to make sure her body isn't rejecting her heart and lungs. She's returning to the things she enjoys — including spending time with her dog, Otto, and riding her horses, Annie and Charlie.  

That thing about why is she still here, which she had trouble expressing as she wrote her letter to her donor’s family? Turns out, she knows after all.  

"My husband and I are average people,” Jackie says. “The care I received allowed me to advance in my career and have a great professional life as well as wonderful personal experiences.

"I'm supposed to do this — to keep giving back and telling my story. If it weren't for Mayo Clinic, it wouldn't have happened." 

The post Heart-Lungs Transplant Recipient: ‘Mayo Clinic’s Care Allowed Me to Experience Life to Its Fullest’ appeared first on Mayo Clinic Magazine.

That’s because he works here.

For staff members in Mayo Clinic’s Department of Development, there is immense joy in working with benefactors to learn their motivations and to amplify their aspirations through Mayo Clinic’s strategic vision for the transformation of healthcare.

Brandon is no different. As an executive director of gift planning administration, he connects with people who want to leave estate gifts and other assets that Mayo Clinic could use like land, buildings, and even antique cars and farm equipment.

Mayo Clinic was a calling for Brandon, whose mom, Rochelle, has worked for years in Mayo Clinic Health System as a registered nurse. He’d heard her stories firsthand and thought it would be a great place to start his own career. Following his graduation with a law degree from Marquette University, Brandon was looking for a new job, and his mom made sure to send him openings about legal opportunities in Rochester.

Becoming a bone marrow donor

Around the time he started at Mayo Clinic in 2015, a close friend told Brandon he had leukemia and needed a bone marrow transplant. After researching how to become a bone marrow donor, Brandon decided to give a blood sample through what was then known as Be the Match to help his friend.

The results came back, and Brandon and his friend weren’t a match, but Brandon signed up for the national registry anyway. Meanwhile, his friend did match with another recipient and received a transplant.

And that was that for seven years.

Then, one day in August 2022, Brandon got an email from Be the Match, now known as NMDP. A patient with cancer needed a bone marrow transplant, and Brandon looked like a good candidate. More testing over the ensuing weeks determined Brandon was the best fit.

“When I first learned I was a match, the first person I called was my friend. We reconnected over the next few months,” Brandon said. “It was so exciting and meaningful to share with him that I was able to give.”

But his friend had tough news of his own to share. His cancer had returned. While his friend was going through treatment and additional care, he passed away.

“Life is short,” Brandon reflects. “My friend was three years cancer-free, and because someone donated for him, he got three more amazing years with his wife and two little girls.

“He wouldn’t have been able to experience that if someone else hadn’t raise their hand and been willing to participate.”

“Life is short. My friend was three years cancer-free, and because someone donated for him, he got three more amazing years with his wife and two little girls."

— Brandon Stenseth

Beyond the gift

There’s a final wrinkle to Brandon’s story. After a year, recipients can choose to voluntarily share information about themselves to their bone marrow donor. Brandon is interested in learning more about the patient who received his donation.

He wants to share the story with them — about his friend’s family and the memories they made together that otherwise wouldn’t be possible without the donation.  

NMDP, the organization that handles the process, believes Brandon’s recipient is still alive but has been unable to share anything more so far.

So Brandon may never know the full story of what happened. How does he feel about the story of friendship left untold to the person who might understand the most?

“I’m so glad I went through with the donation because at Mayo Clinic, the primary value is the needs of the patient come first,” Brandon says. “We spend every day in the Department of Development helping benefactors decide on how to give in a way that inspires their own philanthropic journeys.

“While I give through our employee giving program, this is another way I could help someone in need.”

The post The Gift of Life: Becoming a Bone Marrow Donor appeared first on Mayo Clinic Magazine.

Both Carolyn and Jon grew up in the area and planned to settle there long term, with a barn for Carolyn’s horses — five and counting — and a workshop for Jon’s woodworking.

Their hope? Eventually build a house together.

But they weren’t sure if they would ever have the chance to fulfill their dream. For 13 years, Jon and Carolyn lived and planned their life in two- to three-year increments. In 2007, Jon had been diagnosed with chronic lymphocytic leukemia (CLL) — a cancer that currently has no cure.

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Two at a time

Jon’s diagnosis of cancer happened by chance. After nearly 25 years without visiting a doctor, he decided to go for his first physical since he had exited the military at age 22.

A series of tests showed Jon’s white blood cell count was abnormal. Physicians discovered he had CLL.

CLL is a common form of leukemia in which the bone marrow makes too many white blood cells. This type of leukemia, which affects about 200,000 people in the United States, typically progresses more slowly than other types. Often, patients don’t receive treatment until symptoms become worse.

Jon was shocked. He felt fine, a sign they caught the cancer early. He wouldn’t start his first round of chemotherapy until a year later when he began feeling fatigued.

Jon and Carolyn began dating in 2008 after meeting at the financial software company where they both worked — a year after Jon had been diagnosed with cancer.

“It’s a complicated way to start a relationship,” Carolyn says, “because we really didn’t know what this journey would look like or what the future would hold.”

Shortly after they started dating, Jon began chemotherapy. Doctors told him they anticipated he would have three years with more manageable symptoms before needing treatment again.

“It felt like we were kicking the can down the road,” Jon says. “My doctors knew they were never going to cure my cancer, but they wanted to extend my life as long as they could.”

Jon went through chemotherapy in 2009 at a local oncology clinic and again in 2013 and 2016 at Mayo Clinic. Each time, his cancer would come back slightly different, and within a shorter time frame, than before. In the meantime, Jon and Carolyn spent their days with family — celebrating the arrival of grandchildren, gathering with relatives at reunions and traveling.

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Open image in lightbox

Fading Dreams

In fall 2015, Jon and Carolyn finally bought a plot of land where they hoped to eventually build their home, deciding not to wait for the recurrence of Jon’s cancer but still not confident enough to begin construction.

In the spring, a phone call came that altered everything. Jon and Carolyn were shopping at a department store on a Saturday when Mayo Clinic oncologist Tim Call, M.D., reached out to him.

“Dr. Call said I had a 17p deletion,” Jon says. “It wasn’t until later that we realized the magnitude of what Dr. Call was telling us.”

It was a difficult new twist. A 17p deletion meant part of Jon’s chromosome 17 was missing. This deletion indicates rapid disease progression — meaning the cancer cells have figured out a way to outsmart treatment. His options were running out. Chemotherapy wasn’t going to work anymore.

Carolyn, the planner of the family, immediately became worried.

“You start grasping at straws,” Carolyn says. “I knew it wasn’t good.”

While waiting for next steps, Jon and Carolyn continued living their life as best as they could. They married in summer 2017, a bright spot throughout several emotionally exhausting years.

In 2018, Dr. Call referred Jon to Saad Kenderian, M.B., Ch.B., a hematologist and oncologist who specializes in immunology and immunotherapies — using the body’s own immune system as a method of treatment. Jon and Carolyn began looking at other experimental treatment options. Jon started another round of a BTK inhibitor drug, which blocks the growth of cancer cells. Options, though, continued to dwindle.

“Jon’s cancer was rapidly growing,” Dr. Kenderian says. “We didn’t have many standard of care options that we could offer him at that time.”

In June 2019, Jon received a call from Dr. Kenderian saying that he would be a strong candidate for a new clinical trial — the lifeline he and Carolyn had been looking for.

“It’s like winning the lottery just to get accepted into this clinical trial. I felt really fortunate to have the opportunity. It was hope.”

— Jon Stahlecker

After receiving CAR-T cell therapy treatment, Jon has returned to doing what he loves: carpentry. He enjoys building cabinets and tables, and is planning custom woodwork in his and Carolyn’s new home.

Restoring Hope

The multisite clinical trial was offered as part of Mayo Clinic’s Chimeric Antigen Receptor (CAR)-T Cell Therapy Program, which offers a new cancer immunotherapy that involves genetically modifying T cells to activate the immune system to recognize and destroy certain cancers. The CAR-T cell therapy study enrolled 117 patients with CLL and small lymphocytic lymphoma.

“Clinical trials can be lifesaving,” says Dr. Kenderian, who was the principal investigator for the clinical trial at Mayo Clinic. “It’s how we test new therapies and get them into the clinic to help patients who don’t have other treatment options.”

The criteria to be eligible for this trial included having CLL, having had chemotherapy and having used specific drugs to combat cancer.

“It’s like winning the lottery just to get accepted into this clinical trial,” Jon says. “I felt really fortunate to have the opportunity. It was hope.”

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What Is CAR-T
Cell Therapy?

Traditionally, physicians had three options to treat cancer: surgery, radiation therapy and chemotherapy. But a promising new alternative — chimeric antigen receptor-T cell therapy (CAR-T cell therapy) — has transformed treatment options for certain types of cancer, giving more patients hope.

Discover what CAR-T cell therapy is, how it works and the advancements Mayo Clinic researchers are exploring.

Read More

But it wasn’t an easy journey. Starting the treatment in 2019, Jon experienced dangerously high fevers for the first three weeks and spent that Thanksgiving in the hospital.

Then came a turning point. Jon’s fever broke. And each day he became stronger.

When Jon was infused, 80% of his bone marrow was cancerous. In two months, the cancer was gone — no trace left in his body. After returning home from the hospital at the end of December, he was shoveling snow, determined to live his life as he did before cancer.

The research from the clinical trial found that 18% of participants who, like Jon, had relapsing CLL and no longer responded to treatments such as chemotherapy or BTK inhibitor drugs, experienced complete remission after a single infusion of standard CAR-T cell therapy. The results are encouraging. So far, many patients like Jon are not seeing relapses, even years later.

“If I had developed cancer five years earlier, I don’t think I would be here today,” Jon says. “But I always believed the doctors at Mayo Clinic were going to keep me going. And you know what? They did.”

Despite the immediate results, Jon and Carolyn were still on pins and needles. They faced yet another hurdle: making it one year cancer-free.

That year came and went. And another. And another. What’s more, Jon felt as good as he did before he was diagnosed with cancer.

“It’s really gratifying as a provider to hear that Jon is feeling back to his old self,” Dr. Kenderian says. “I hope we’ll be able to increase the success rate of CAR-T cell therapy to 100% of people across all types of cancers.”

Jon is back to hunting, fishing and golfing. His visits to the doctor’s office continue to decrease, from every three months to now every six.

“I’m back to living an active life,” Jon says, “and I feel better than I have in many years.”

“I’m back to living an active, normal life, and I feel better than I have in many years.”

— Jon Stahlecker

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Researcher Spotlight: Claudia Manriquez Roman, Ph.D., M.S.

Mayo Clinic researchers are enhancing CAR-T cell therapy's effectiveness for cancer treatment.

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The Next Chapter

Jon and Carolyn are now able to live fully, grateful for the newfound freedom that Jon’s cancer most likely won’t return.

Jon spends his days building cabinets, tables and more in his shop on the property and working the land with his tractor as there are still more projects to do after eight years of just getting by. Currently, they live a few miles away in Mosinee, where they spend quality time with their grandkids, who live just across the street.

Most importantly, they have plans to build their house — finalizing the design in fall 2023.

A contractor will build the foun­dation and walls and install the windows. Jon and Carolyn will do the rest, adding touches like Jon’s custom cabinetry. By the time the leaves change colors in 2024, they’ll be living their dream.

“What makes it even more special is that this is something we’ve been wanting to do for eight years, and we couldn’t,” Jon says. “It’s finally really happening thanks to Mayo Clinic.”

The post Building a Home After Cancer appeared first on Mayo Clinic Magazine.

“It was a pivotal moment,” says Rohan M. Goswami, M.D., an advanced heart failure and transplant specialist at Mayo Clinic. “She holds a special place in my career because she was somebody who we learned a lot from.” 

Paula already had a complex health history — leading-edge treatments from a clinical trial had cured her aggressive cancer but caused a rare complication that damaged her heart and eventually caused her to require a heart transplant. 

“In the operating room, she passed away,” Dr. Goswami says. “And the team worked very hard to resuscitate her. We had to make a decision on the fly — do we think she would survive the transplant? 

“Our surgical team, our medical team, our anesthesia team all came together and felt that she was sick enough to take that risk to continue to pursue that transplant. And we were confident that we would be able to manage any complications that came after.” 

After the team worked to resuscitate Paula, the surgery continued. The results were better than anyone expected.

“She actually did great,” Dr. Goswami said. 

Eventually. But her journey wasn’t quite over. 

Timeless Moments

If there’s one place that holds a special place in Paula’s heart — it’s the stables. 

“I think that most people have something in their life that gives them a sense of peace and a sense of connection,” she says. “And that's what I feel with the horses, especially in quiet times when there's not a lot of action in the barn on cold days. You can see their breath and just hear the small noises they make in the stall, the way they greet each other, the way they greet you, just walking through the barn. 

“You see the sunrise and the sunset with their lives — the beauty of seeing the green grass and the mist across the pastures and seeing the horses run across the pasture with the little babies running behind. 

“It's just peaceful. And there's a connection with the world and nature that I just find comforting. I love it.” 

Paula and her husband, Jim, of St. Augustine, Florida, invested in horses in 2004 and did a little bit of everything — breeding, show jumping, racing and more. 

“Paula is just brilliant,” Jim says. “She has an absolutely brilliant mind, and she is a loving, kind and just gracious woman. I was very fortunate to marry up as far as I did.” 

Life was good until 2011, when Paula developed an unexplainable rash and fatigue that wouldn’t go away. She and Jim thought maybe she had pneumonia. Instead, the hospital sent in the chaplain to talk to them before a doctor delivered a diagnosis. 

“I asked Jim after the chaplain left, ‘Why did they send the chaplain in?’” 

“Oh, they just do that,” Jim replied. 

“They didn’t do that when I broke my toe,” Paula quipped at the time. 

The subsequent news would send them into despair. Local physicians determined Paula had an advanced, aggressive form of non-Hodgkin’s lymphoma. 

To determine exactly what kind of cancer they were dealing with, her local care team sent Paula’s samples to Mayo Clinic in Rochester, Minnesota, for evaluation. 

“I looked at Jim and said, ‘If they have to send the sample to Mayo to figure out what it is, I want to be treated there,’” Paula remembers. 

Saving Paula Once

Paula called Mayo Clinic in Jacksonville, Florida, and received an appointment with hematologist James M. Foran, M.D. 

Dr. Foran recommended a clinical trial that Mayo Clinic was leading. The clinical trial wasn’t without risks, including a rare complication — chemotherapy-induced cardiomyopathy. 

“We discussed that with Dr. Foran, and he said, ‘I hate to say this, but let’s hope you live to have heart failure, because the consequences of not having the treatment is that you will die,’” Paula says. “And so, when you put it like that, that becomes a secondary problem.” 

When Dr. Foran first met Paula, he was immediately concerned because she had a very large mass in the center of her chest, compressing her heart, along with blood markers that showed aggressive features of non-Hodgkin’s B-cell lymphoma. 

“We had just opened a clinical trial led by my colleagues at Mayo Clinic in Rochester. Hematologist Grzegorz S. Nowakowski, M.D., wrote the study, giving intensive chemotherapy with curative intent, but adding an additional agent to it,” Dr. Foran says. “We were worried we may not have gotten Paula into complete remission, but we did.”

However, Paula was unlucky — somewhere around 2% of patients can develop a heart side effect of chemotherapy. 

“When it was discovered Paula had this heart problem caused by the chemotherapy drugs, Dr. Foran was devastated,” Jim says. “He was weeping with us. There's just no other way to describe it.” 

As the first integrated, multidisciplinary medical practice in the world, Mayo Clinic not only is an elite institution for cancer care through the Mayo Clinic Comprehensive Cancer Center, but also has one of the top cardiology programs and transplant programs in the world. 

“Paula was initially sent to us in 2015 for consideration of transplant by her cardiologist, Leslie T. Cooper, M.D.,” says Parag C. Patel, M.D., chair of the Division of Advanced Heart Failure and Heart Transplant at Mayo Clinic in Florida. “With medical therapy and with an improvement in her lifestyle, she actually was able to feel better despite having a weak heart.” 

Paula also acknowledges she had “delusional” hope that powered her. 

“When I was first diagnosed with the diminished heart function, I knew there are some cases where it does rebound, so I was sure that it would rebound. And after a certain time passed and it didn't, I still thought it would get better,” Paula says. “There was a period where my heart function did get better, and it was to the point where I could have lived with that. 

“But my niece who is a physician assistant for a transplant surgeon kept counseling me that it was not going to get better. There were only two outcomes — death or a heart transplant.” 

While spending time at the barn in 2017 and 2018, Paula noticed things were getting worse. Her ability to do what she loved diminished to the point she could only ride a small pony named Cowboy. 

“He was a lot of fun. But he grew too old to ride in 2018. And when that happened, I thought I would never ride again,” Paula says. 

Jim realized that changes were ahead too. Paula began staying more and more at the hospital in Jacksonville as her health declined, and Jim would drive home alone to St. Augustine. 

“One night in July 2019 I came to the realization that I was going to have to begin praying for the donor family,” Jim says. “I just began weeping uncontrollably and pulled into the rest stop until I was able to get myself back together again. And to this day, I mean, I still do that every morning when I read my Bible and every night before I go to bed. I think about them and our life. 

“I understand how close we came to Paula not surviving. And I cannot imagine the devastation of the family that lost their loved one.” 

Saving Paula Twice

Mayo Clinic doctors placed Paula on the list for a heart transplant in January 2020. By March, she was running out of time — and each opportunity for a transplant yielded a heart not quite right for her. She was admitted to the hospital late in April 2020. 

“When you see patients like Paula starting to lose muscle mass and having difficulty taking a shower, in my mind, it is almost too late for us to think about transplant,” says Dr. Patel. 

Paula says that by mid-May she felt close to dying. She dwindled to just 85 pounds. 

“I read someplace that a grateful heart is a magnet for miracles,” Paula says. “And I believe that. In the hospital, waiting for my heart, I was thankful every day for the nurses and for the beeping that was keeping me awake — from the machines to the doctors.” 

On May 21, 2020, Paula was wheeled into surgery. And just before the transplant began, her heart stopped beating. 

Warmth and Comfort

Awake. That’s the next thing Paula recognized. 

Intubated, Paula couldn’t feel the beat of her new heart, but the monitors clearly showed her it was vibrant and active. The next sensation was just how good she felt for the first time. 

“Instead of being cold, I felt warm,” she says. “You can feel that your face is flush. You have color, and it’s immediate. It’s immediately like you’re a different person.” 

Says Dr. Goswami: “I remember talking to her afterward in the hospital, joking with her, ‘If you really wanted all that attention, you didn’t have to be all that dramatic.’ 

“I can laugh about it now with Paula.” 

Reflecting, Paula and Jim feel a deep sense of gratitude rooted in their faith. 

“I feel like I have a second life,” Paula says. “Paula 2.0, we sometimes call it.” 

The Anonymous Giver

For Mayo Clinic teams, there is always someone next as the organization fulfills its primary value daily — the needs of the patient come first. Sometimes, the knowledge that patients are waiting for care or pass away during treatment or awaiting a heart transplant challenges even the strongest teams. 

One day a letter showed up for Dr. Patel. 

“It stated somebody had given to Mayo Clinic in honor of our team,” Dr. Patel says. “We go through this day in and day out, pushing to fight for our patients. It really is touching for our entire team, to say the least, to hear that people are contributing on behalf of what we've done.” 

The gift came from a charitable organization the Quinns were active in establishing and have volunteered with over the past 20 years. 

“They wanted to honor me and thank Mayo for the part they had played,” Paula said as she choked back tears. “Jim and I realize how we've been blessed, and we are very grateful that the organization decided to make a contribution to Mayo because those funds not only will help support ongoing infrastructure and staffing, but also ultimately will benefit someone in a situation like mine.” 

Riding Again

After the heart transplant, Paula got stronger and healthier. And she began spending more time at the stables.

Still, she was nervous being around horses, living in fear of heart failure and the potential to be seriously hurt or sick again. When asking for a small bit of advice from Dr. Goswami about being near horses, he told her something else — she could ride again. 

“I can ride?” she queried, surprised. 

“I thought you would have already done so by now,” Dr. Goswami replied. 

The thought stuck in her head, but surely she couldn’t. When she relayed the story to Jim, he asked her if she wanted to do it. And Paula wasn’t quite sure. She put the thought aside. She hadn’t ridden in years. There were too many unknowns. Too many “what ifs.” 

But then, her niece’s two young sons asked about going to a barn to ride a pony. So Aunt Paula dutifully arranged a riding session. 

“When the little boys got off riding the pony, I said to myself, I’m just going to get on.” 

She faltered. Again, doubt flashed through her mind. Would she be strong enough to get on? What about getting off? The safer thing was not to ride. To leave instead and go back home to Jim. 

But those horses — those beautiful, magnificent creatures — remained an irresistible draw. 

She came back to the barn a few days later and talked to Ryan, the man who trains and rides her show horses, about her desire to ride a horse nicknamed Vali that he had been working with. 

“Do you think it would be safe?” 

He nodded. 

Vali was the perfect horse at the perfect time. After Ryan finished with Vali for the day, Paula put her hands gently on the peaceful animal. 

Then she mounted Vali’s smooth leather English saddle, and they moved forward together, as the tears rolled down Paula’s cheeks. 

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