Cardiology Patient Stories - Mayo Clinic News Network https://newsnetwork.mayoclinic.org/category/sharing-mayo-clinic-2/cardiology-patient-stories/ News Resources Fri, 05 Sep 2025 15:32:36 +0000 en-US hourly 1 https://wordpress.org/?v=6.8.3 A Mayo first: Innovative transplant procedure saves patient’s life after heart failure https://newsnetwork.mayoclinic.org/discussion/a-mayo-first-innovative-transplant-procedure-saves-patients-life-after-heart-failure/ Wed, 25 Jun 2025 14:51:31 +0000 https://newsnetwork.mayoclinic.org/?p=404065 Sue Baker started having issues with her heart in 2015. By 2019, she began experiencing heart failure. Living in Southeast Georgia, her condition landed her in the hospital seven times before the last visit led to her being transferred to Mayo Clinic in Florida, nearly 90 minutes away, critically ill. "She was really sick — […]

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Sue Baker

Sue Baker started having issues with her heart in 2015. By 2019, she began experiencing heart failure. Living in Southeast Georgia, her condition landed her in the hospital seven times before the last visit led to her being transferred to Mayo Clinic in Florida, nearly 90 minutes away, critically ill.

"She was really sick — in cardiogenic shock, intubated, connected to a breathing machine — she was not going to make it," says Dr. Parag Patel, a Mayo Clinic transplant cardiologist. "She only had three to six months to live, and we needed to act fast."

Watch: Sue Baker's story

Journalists: Broadcast-quality video pkg (2:21) is in the downloads at the end of the post. Please courtesy: "Mayo Clinic News Network." Read the script.

Sue's situation had become dire. She was presented with two options: enter hospice care or have a left ventricular assist device (LVAD) implanted to serve as a bridge to a heart transplant. While she chose the LVAD to buy more time, by 2023 she was experiencing dangerous heart rhythms and other challenges.

Complicating matters, her body was producing more antibodies, making it increasingly difficult to find a suitable transplant donor.

"It was devastating to know that I'm actually going to die," says Sue. Still, she did not lose hope. "You just grab hold of God and keep praying," she says.

Sue's care team also remained determined to help her hold on. They explored an innovative approach — called Heart After Liver Transplant with a Domino Liver to another patient (HALT-D) — that had shown success in patients with similar antibody counts.

HALT-D, however, had never been attempted on someone with a heart pump like hers. This procedure would be a first for Mayo Clinic, at any of its transplant sites.

Although Sue's liver was healthy, she would need to get not just a heart transplant but also a donor liver to help remove the antibodies from her body and reduce the risk of her new heart being rejected. This meant a rare and complex domino transplant, involving both a liver and a heart, where Sue's liver would also become part of the donor chain.

"We take the liver of the patient who's receiving the heart after liver, and we take that liver and we put it into another recipient so that we do not waste an organ," says Patel.

Preparing for this complex procedure involved extensive multidisciplinary collaboration between a variety of Mayo Clinic departments. Sue spent months in the hospital, waiting for a match. During her wait, fellow patients and staff began calling her "mama" for the care and support she provided everyone else, despite her own challenges.

"We get to know each other and kind of help each other out," says Sue. "That was a lot of healing and helpfulness there."

Sue Baker with members of her Mayo Clinic care team - where she had a Heart After Liver Transplant with a Domino Liver or HALT-D
Sue Baker with members of her care team.

"Sue not only helped people on the floor, but she's helped other patients who didn't have an opportunity" for transplant, says Patel.

Finally, in September 2024, the domino transplant was performed successfully.

Today, Sue is on the path to recovery, growing stronger each day. Her motivation to live is fueled by the desire to honor her donor, whose gift has given her a second chance at life.

"I would love to thank and meet the family," says Sue. "I'm not going to sit back and do nothing. That person will always be special."

Her story is a testament to the power of medical innovation, the dedication of healthcare professionals, and the resilience of the human spirit.

"I love her, and I appreciate the doctors and all the nurses that have been so loving and caring for Sue,” says Charlene Taylor, Sue's caretaker.

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

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Dr. Jason Anderson discussing the new valve with Kyle Davidson

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

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

Watch: Kyle Davidson's story

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

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

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

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

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

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

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

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

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

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

Kyles new valve

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No one expected how this night would end.

Watch Colt Ford's story of survival

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

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

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

No one expected what happened minutes later

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

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

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

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

Colt Ford

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

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

A silent killer

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

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

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

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

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

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

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

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

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

"I'm back, baby!"

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

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

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

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

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‘I’m so happy we’re here:’ An unexpected diagnosis saves Rich Bugay’s life https://newsnetwork.mayoclinic.org/discussion/im-so-happy-were-here-an-unexpected-diagnosis-saves-rich-bugays-life/ Fri, 07 Jun 2024 13:55:43 +0000 https://newsnetwork.mayoclinic.org/?p=388591 Rich Bugay had an appointment with the Division of Gastroenterology and Hepatology at Mayo Clinic in Rochester, Minnesota, on a Monday, where he had hoped to get answers and relief for what he thought was refractory acid reflux — until his doctor discovered a heart murmur. The next morning, Rich was told he had congenital […]

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Rich Bugay had an appointment with the Division of Gastroenterology and Hepatology at Mayo Clinic in Rochester, Minnesota, on a Monday, where he had hoped to get answers and relief for what he thought was refractory acid reflux — until his doctor discovered a heart murmur. The next morning, Rich was told he had congenital heart disease and a severely dilated aorta that could rupture. Just two days later, Rich underwent lifesaving heart surgery. After a whirlwind four days, Rich was on the road to recovery.
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Rich Bugay, an HVAC business owner, husband, and father to two children, hadn't been feeling well for over a year. What started out as sinus issues gradually turned into severe acid reflux and exhaustion, making it hard for Rich to get through the workday.

"I wasn't feeling well — I had a lot of acid reflux and stomach discomfort. I had been going to a lot of different doctor visits, like my family practitioner, and I wasn't getting any answers," says Rich. "And so, at some point, I decided I wanted to go to the best place I could go."

Watch: Rich's story

Rich and his wife, Lori, left their house in Escanaba, Michigan, and drove more than six hours to Mayo Clinic in Rochester for an appointment with Dr. Houssam Halawi, a Mayo Clinic gastroenterologist.

During the appointment, Dr. Halawi listened to Rich's history, concerns and symptoms.

"And what caught my attention was, he had a lot of different symptoms that didn't really belong in the GI (gastrointestinal) world," says Dr. Halawi. "And at that point, in my mind, I was thinking this is not an acid reflux problem."

Dr. Halawi listening to Rich's heart

When Dr. Halawi listened to Rich's heart, he heard a suspicious murmur. He knew something — potentially big — was going on, and he recommended that Rich receive an urgent echocardiogram. An echocardiogram is a common test that uses sound waves to create pictures of the heart to find heart disease and other heart conditions.  

Rich was hesitant to have the echocardiogram since he just wanted some relief from his presumed acid reflux and didn't think he had a life-threatening issue.

Knowing that Rich would most likely go home if the echocardiogram couldn't be scheduled quickly, Dr. Halawi asked the scheduling team if there was any way they could arrange the echocardiogram for the next day. When the scheduler asked, "Would tomorrow morning work for you?" Dr. Halawi didn't expect it to be that quick.

Rich and Lori decided to stay at Mayo Clinic for the echocardiogram the next morning.

Dr. Jain meeting with Rich

Confirming suspicions

Kylie Marvin, the sonographer who performed the echocardiogram, immediately noticed something was seriously wrong. She walked out into the hallway and informed Dr. Charles Jain, a Mayo Clinic cardiologist, about her findings.

"His aorta was severely dilated, well over what we would traditionally consider as the surgical cutoff for elective intervention," says Dr. Jain.

A severely enlarged aorta — the pipe that delivers blood out of the heart — could have acute complications, such as a rupture, which can be life-threatening.

The echocardiogram also showed that Rich had a bicuspid aortic valve.

The aortic valve usually has three cusps. A bicuspid valve has only two cusps. Rich's bicuspid valve wasn't closing tightly, which was causing blood to flow backward.

Dr. Jain called a radiologist and arranged an urgent CT scan for Rich that same day. The results of the CT scan confirmed the findings, and Dr. Jain called Dr. Gabor Bagameri, a Mayo Clinic cardiovascular surgeon, who was willing to make room in his schedule to quickly see Rich and arrange for surgery.

"At Mayo Clinic, the needs of the patient always come first, and even in the middle of the night, 24/7, you can always reach for help," says Dr. Bagameri.

He encouraged Rich that his heart problems were fixable and advised him not to wait to undergo surgery.

"He let me think about it and came back into the room about five minutes later and he says, 'OK, so we're going to do this Thursday, right?' I say, 'You know it.' And he says, 'I knew you were going to say that!' So, we were ready," says Rich.

"Like a well-oiled machine"

On the day of the surgery, Rich said everything was very structured and organized. The surgery itself was a success, as was his hospital stay.

"Like a well-oiled machine, everything just went so well, so smoothly," says Lori. "I've never experienced anything like that before, and that's how healthcare should be everywhere. Everyone deserves to be treated like they do here."

Now, nearly six months after his procedure, Rich feels almost 100% better.

"They saved my life," says Rich. "I'm a completely different person — I feel like a million bucks. I can do what I want to do, and my energy levels are much better."

Looking back on the experience, Dr. Halawi recognizes that Rich wouldn't have had such a positive outcome without every single person involved at Mayo Clinic. Dr. Jain echoes that sentiment, "When there are patients who are having a significant abnormality, particularly with urgency, such as Rich's, everything is already set up for teamwork to be natural, and fortunately, this makes it all relatively seamless."

Reflecting on his healthcare journey, Rich says that you need to advocate for yourself.

"If you haven’t been feeling right for a long time and feel like you're not getting answers, come to Mayo Clinic because they'll get to the bottom of it," says Rich.

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A promise delivered: A new heart for a new mom https://newsnetwork.mayoclinic.org/discussion/a-promise-delivered-a-new-heart-for-a-new-mom/ Thu, 29 Feb 2024 13:29:49 +0000 https://newsnetwork.mayoclinic.org/?p=382509 A challenge from the beginning 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 […]

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A challenge from the beginning

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."

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.

Watch Promise's Story

Promise Garell tells her story

"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 to Mayo Clinic.

Mayo Clinic provides new heart, new lease on life

In early September 2022, Promise arrived at Mayo Clinic in Florida. Throughout her life, she says 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 Dr. Rohan Goswami, a Mayo Clinic transplant cardiologist. "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 Dr. Parag Patel, a Mayo Clinic transplant cardiologist.

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 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."

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Heart transplant patient finding motivation through competition, music and the Mayo Clinic community https://newsnetwork.mayoclinic.org/discussion/heart-transplant-patient-finding-motivation-through-competition-music-and-the-mayo-clinic-community/ Thu, 22 Feb 2024 16:30:00 +0000 https://newsnetwork.mayoclinic.org/?p=382327 The fall It was Good Friday 2023. Mark Forbess was just leaving Mayo Clinic in Florida after his first appointment as a new patient at the heart failure program, when everything went black. "I found myself on the pavement in front of Mayo Clinic," says Mark. "I was emerging from unconsciousness. Everything was dark. I […]

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Mark Forbess playing the piano in the Mayo atrium

The fall

It was Good Friday 2023. Mark Forbess was just leaving Mayo Clinic in Florida after his first appointment as a new patient at the heart failure program, when everything went black.

"I found myself on the pavement in front of Mayo Clinic," says Mark. "I was emerging from unconsciousness. Everything was dark. I opened my eyes to see that my face was pressed onto the hot, black pavement."

People nearby ran to his aid as he experienced excruciating pain in his head, back and neck. From there, he was rushed to the emergency department in the building he was just leaving.

Mark had experienced a devastating heart electrical event.

Where it all began

At around 33 years old, Mark was diagnosed with hypertrophic cardiomyopathy (HCM), a disease in which the heart muscle becomes thickened. The thickened heart muscle makes it harder for the heart to pump blood.

"Over time, my heart health began to decline," says Mark. "The heart failure turned into devastating episodes of atrial fibrillation (AFib) and ventricular tachycardia (V-tach). During this time, I experienced four V-tach episodes which required my implantable cardioverter defibrillator (ICD) to bring me back to life, in addition to eight cardiac ablations."

In the fall of 2022, he was referred to Mayo Clinic for a PET scan to look for other heart diseases. At the time, nothing was found that met Mayo Clinic's heart failure treatment criteria, so he was not approved as a cardiology patient. However, in March of 2023, after experiencing congestive heart failure while being treated at another medical institution, he was referred to Mayo Clinic again as a candidate for the heart failure program.

The following month, he was approved for the program under the care of Dr. Melissa Lyle, a Mayo Clinic cardiologist.

A candidate for transplant

After the emergency department triage, Mark recalls his cardiologist saying, "Congratulations, Mr. Forbess. You just won a ticket to be evaluated for the heart transplant program." From there, he went through a battery of evaluation tests, which he passed, officially allowing him access to Mayo Clinic's heart transplant program.

"I knew that when Dr. Lyle told me I was entered into the Mayo Clinic heart transplant program that God was in total control of my life," says Mark. "He was guiding her and providing the confidence, from years of training, that I could live a happy life again by having a new heart."

Within a month, Mark was admitted to Mayo Clinic and waitlisted for his new heart. Transplant patients are ranked by necessity, and due to his condition, he was at the top of the list.

Mark had a rare heart deformation in which his left ventricle was very enlarged. This is considered unusual in HCM patients because their heart walls are usually very thick and the ventricles are small. As a result, Mark became eligible for a cardiac device — a small heart pump that helped improve his oxygen blood levels while he waited for his heart transplant.

The Daytona 500 meets the ICU

In an effort to lift the spirits of their patients and encourage some much-needed exercise, the nurses on Mark's floor came up with some competitive fun.

"These patients are not your typical ICU patients," says Sara Vilela, registered nurse. "They are often walking and talking, something we are not used to in the ICU. This means we have to make sure we are catering to this special patient population and ensuring that not only their medical needs are being taken care of, but also their social needs."

Mark and fellow cardiac ICU playing dominoes

The nursing staff set up a series of games from dominoes to a "Cardiac Device 500" footrace between patients around the hospital unit, measured by the distance they walked each day.

"It was a bit of a leap to think playing games at a time like this was appropriate," says Mark. "After all, we were in the ICU. When you showed up and participated, you were hooked. It was that much fun and necessary. No medical tests, no medicine and no bad news. Nothing but fun, and that’s always good for the soul. I participated in afternoon game sessions with other heart transplant patients, their families, my brother Jeff and the outstanding Mayo nursing staff. We looked forward to the opportunity to meet each other and focus our minds on something we had in common and away from our current health status."

The games were a big hit among the patients, inspiring much creativity, especially the races. They created names for their cardiac devices, team logos and even fake sponsors. Mark named his heart pump "Archie," after his father.

Mark recalls being barely able to walk a small lap at the beginning of this journey. However, walking more and more each day, motivated by a new heart and some friendly competition, he began walking about five to seven miles a day, even hitting a heart pump record of 10.8 miles.

"By hosting game times, these patients were able to talk to one another about the struggles of waiting for a heart transplant, but also the triumphs, such as beating their previous day's record of laps," says Vilela. "They connected over this unique experience and bond with one another, which resulted in a patient population encouraging each other, remembering they are not alone on this journey."

Inspired by memories

Mark lost his wife of nearly 40 years, Michele, in June 2022, approximately 10 months before entering Mayo Clinic on the heart transplant waitlist.

"I had spent many days grieving in the Mayo atrium over my wife," he says. "I wanted to change that to positive, fun memories instead by providing a little entertainment playing the beautiful grand piano and maybe brighten someone else's day." He pursued the opportunity to play with the encouragement of one of his nurses, Frances Ausley, and Rose Grace from the Humanities in Medicine Department. Grace is a concert level pianist herself who occasionally visited Mark in his hospital room to play the keyboard.

"Frances Ausley has incredible capabilities and a very hard work ethic while providing care to all those around her," Mark says. "Rose Grace encouraged me and gave me the confidence that I could play the piano under these circumstances."

While playing the piano helped, he still found himself battling anxiety and sadness around the anniversary of losing his wife.

"Managing anxiety on the one-year anniversary of my wife's passing was going to be very difficult," Mark says. "Wanting to celebrate her life outside, I was stuck in the ICU waiting for a heart, knowing that any high anxiety could trigger severe heart arrhythmia. Carolina Robles de Brady, a wonderful and thoughtful nurse from El Salvador, secretly arranged to reenact the dinner my wife and I had made on our first date — chicken cordon bleu with blueberry fluff as dessert. She asked me the day before about memories of a favorite dinner with my wife. I was pleasantly surprised as Carolina kept me calm while we celebrated my wife's life."

Later on, Mark would nominate Carolina for a DAISY Award, honoring nurses who go above and beyond to provide compassionate care to patients and families. She was selected and recognized with the award in December 2023.

A new heart, a new day, a new future

On July 14, 2023, Dr. Rohan Goswami entered Mark's room. Expecting another donor update, the news was different this time. "I found you the perfect heart," Mark recalls Dr. Goswami saying.

"I never had children, but I’m guessing this is one of the most exciting pieces of medical news you could ever receive," says Mark. "After several months of waiting, Dr. Goswami is telling me I have a heart coming. It was an unbelievable experience. The sacrifice a donor family makes to give organs to another human being is one of the greatest acts of unselfishness and kindness a person can do on this earth. It's real, and it's effective. My donor family will be forever in my soul as I wake up every day thanking them in my prayers."

Mark Forbess

Mark received his new heart on July 17, 2023.

After more than 30 years as an investment banker, Mark started thinking about a long-term career goal he'd always wanted to pursue. Since childhood, he wanted to be a screenwriter and filmmaker.

"Before I entered the hospital for my transplant, I purchased screenwriters professional software used to write film scripts and loaded it onto my computer," says Mark. "I always wanted to produce films that would help people find true, long-term happiness in life. If I could write one particular story while waiting for my heart transplant, I would be a happy person myself."

Since leaving the hospital, he has achieved this goal by completing his first screenplay and has begun the process of marketing it to the film industry. As for his health journey, he continues to excel at cardiac rehabilitation, lowering medications every month as his recovery progresses.

Paying regular visits to Mayo Clinic staff since his transplant, Mark acknowledges that everyone he met while waiting for his transplant helped make his experience a good one.

"During this time, I would meet many incredible nurses, doctors, physician assistants, housekeeping team members, Food Services team members and a host of other personnel who took great pride in their roles," says Mark.

His interactions with all staff, even beyond his hospital room, became an expansion of his care team. Many share that Mark had just as much of an impact on them.

"The power of food and how it changes the patient experience by broadening the scope of meal service providing comfort, connection and nutrition is a component of their care," says Casey Wingerter, patient ambassador for Mayo Clinic Food Services. "During Mark's stay at Mayo, meals became a medium for connection, and connection was critical for his transplant journey. He healed while at Mayo, and it was the people that made the difference. That human connection is what he held on to and is why he became a bright spot in our staff's days as well."

Mark recalls how much Wingerter and her team truly made a difference. Before he left the hospital, he says the Food Services team gifted him a small suitcase full of his favorite gum as a way of saying thank you from Wingerter and the Food Services team.

"I firmly believe God answers our prayers," says Mark. "My hope is that my testimony can serve as a powerful tool for you to convey the profound significance of God in our lives. His presence can guide us through seemingly impossible challenges, which will lead to a truly long-term, happy life."

Additional resources:

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A Valentine’s Day story of love, legacy and the gift of life https://newsnetwork.mayoclinic.org/discussion/a-valentines-day-story-of-love-legacy-and-the-gift-of-life/ Tue, 13 Feb 2024 16:36:35 +0000 https://newsnetwork.mayoclinic.org/?p=381750 The Duffer family’s home is filled with lots of love this Valentine’s Day. They have a new baby girl, and dad got the lifesaving heart transplant he needed. Take a look at the special way the Duffer family is now recognizing love, legacy and the gift of life. Watch: A Valentine’s Day story about love, […]

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Harley and Justine Duffer with their newest family member, Peyton

The Duffer family’s home is filled with lots of love this Valentine’s Day.

They have a new baby girl, and dad got the lifesaving heart transplant he needed.

Take a look at the special way the Duffer family is now recognizing love, legacy and the gift of life.

Watch: A Valentine’s Day story about love, legacy and the gift of life

Journalists: Broadcast-quality video pkg (1:50) is in the downloads at the end of this post. Please courtesy: “Mayo Clinic News Network”. Read the script.

Harley’s fight to survive

Being together as a family has a deeper meaning for the Duffer family this Valentine’s day. In 2021, Harley suffered heart failure stemming from a rare genetic condition. He says doctors told him his only chance for survival was to get a heart transplant.

“I was basically on my deathbed,” says Harley. “They told me I had six months to live.” Doctors also told Harley the transplant would be the hardest thing he’s ever done in his whole life.

Harley says he had to fight to survive for his family.

Harley was placed in a medically induced coma while on the heart transplant waiting list
(photo courtesy: Duffer Family)

The wait for a heart donor

Harley was placed in a medically induced coma at Mayo Clinic to minimize damage to his heart while waiting for a donor organ to become available. Each passing day took its toll on the family.

"There were several instances where the fear of him not making it through set in very heavy. And then you have a daughter at home saying ‘Where’s daddy? Where’s daddy?’ It was a lot to go through,” remembers Justine.

The Duffers got the call they were hoping for - a donor heart was available. Harley underwent a successful transplant and began his long road to recovery.

Harley Duffer leaving Mayo Clinic after his successful heart transplant
(photo courtesy: Duffer Family)

Heartfelt gratitude

After regaining his health, Harley got the chance to do something he never expected. He was given the opportunity to meet the family of his organ donor, Peyton Nurse.

Both families got together and listened to Peyton’s heart beating healthy and strong in Harley’s chest.

“I could not have asked for a better donor family. They are so caring and welcoming,” says Harley. “I understand they are going through a loss, but I want to be here for them. They are just the best kinds of people.”

Lesley Nurse listens to the heartbeat of her son Peyton’s donated heart

Remembering the life and legacy of Peyton Nurse

Peyton is remembered as a loving son, a brother, a friend to all, and a star student who always sought to help others in his community. He tragically lost his life in a car accident. His last wish was to be an organ donor. Peyton’s heart became the gift of life for Harley.

“We went to see Peyton’s resting place,” says Harley. “Such bravery and selflessness from a young man. I just want to say thank you to Peyton’s family, for your son’s bravery and the sacrifices he’s made.”

Peyton Nurse lost his life at the age of 21. His last wish was to be an organ donor
(photo courtesy: Lesley Nurse)
Harley Duffer visiting the gravesite of his heart donor, Peyton Nurse
(photo courtesy: Duffer Family)

Harley and Justine are now back at home with their daughter, Libi, and their newborn baby girl. With their hearts full of love and gratitude, and the hope to carry on the legacy of their heart donor, they named their new baby girl, Peyton.

“We want her to know the importance of organ donation, and that’s why her daddy is still here, to raise his girls, and be here with us all together,” says Justine.

Peyton Duffer at four weeks old

Carrying on the legacy of her son’s name means the world to his mom Lesley. “I can’t wait to hold baby Peyton in person and hold her in my arms,” shares Lesley. The name “Peyton” holds a special place in her heart because not only was it her son’s name, but a name that was handed down for several generations in her family.

Lesley shared these two pictures as a Valentine’s Day message to serve as a reminder of the power of love, legacy and the gift of life.

Peyton Nurse
Peyton Duffer

“Naming their baby after my son Peyton is the highest honor and symbol of gratitude, magnitude, and love. Thus he, through his gift of organ donation and now his name, is part of their family forever. Names create legacies. We will always be connected in so many ways.
We are forever grateful.

Lesley Nurse, Heart donor’s mom

Related articles:


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Remarkable recovery after minimally invasive heart surgery https://newsnetwork.mayoclinic.org/discussion/remarkable-recovery-after-minimally-invasive-heart-surgery/ Sun, 12 Nov 2023 11:00:00 +0000 https://newsnetwork.mayoclinic.org/?p=376391 In Steve Bernstein, M.D.'s neighborhood, Halloween is a fun time for children and families. Dressed in their costumes, they visit neighbors' homes; the chorus of "Trick or Treat" rings out as goodies are dropped in their bags. Halloween 2022 was particularly remarkable for Dr. Bernstein, however. He'd undergone a minimally invasive aortic valve replacement surgery […]

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In Steve Bernstein, M.D.'s neighborhood, Halloween is a fun time for children and families. Dressed in their costumes, they visit neighbors' homes; the chorus of "Trick or Treat" rings out as goodies are dropped in their bags.

Halloween 2022 was particularly remarkable for Dr. Bernstein, however. He'd undergone a minimally invasive aortic valve replacement surgery just four days earlier but now felt well enough to join the trick-or-treaters.

Dr. Bernstein's path to this remarkable recovery started many years earlier.

An unlikely diagnosis

The 65-year-old is a urologist in Minneapolis, seeing patients with prostate, bladder or kidney conditions. Dr. Bernstein also has a passion for action, from sailboat racing to vigorous bicycling, which at times has led to an injury.

During an emergency department visit in 2015 for a broken foot, he was diagnosed with a heart murmur. Dr. Berstein was surprised. With no heart murmur symptoms, like shortness of breath, chest pain or dizziness, he had been unaware of the condition affecting his heart. The emergency department team recommended a follow-up appointment with a cardiologist.

The exam and testing by a cardiologist determined that Dr. Bernstein had aortic regurgitation and left ventricular hypertrophy. Aortic valve regurgitation causes the valve between the lower left chamber and the body's main artery to not close tightly. As a result, blood can lead backward out of the left ventricle, the heart's main pumping chamber.

Left ventricular hypertrophy develops gradually, and some people, like Dr. Bernstein, don't have symptoms. Symptoms can develop, however, as the thickening in the heart walls makes it harder for the heart to pump blood to the body effectively.

A holding pattern

After the diagnosis of left ventricular hypertrophy, Dr. Bernstein continued with his medical practice and enthusiasm for sailing and biking. His cardiologist monitored his condition for the next seven years.

During that time, he knew he eventually would need a procedure to address the aortic stenosis. When the valve narrows, the heart must work harder to pump blood into the aorta.

In 2022, Dr. Bernstein and his cardiologist decided it was time to take action with an aortic valve replacement.

Researching the best treatment

During aortic valve replacement, a surgeon removes the damaged valve and replaces it with a mechanical valve, or one made from cow, pig or human heart tissue. The valve replacement may be done through traditional open-heart surgery, also called a midline sternotomy, which involves an incision in the middle of the chest and dividing the sternum or breastbone. A more minimally invasive method uses a smaller incision in the chest or a catheter inserted in the leg.

Bernstein began extensive research on aortic valve replacement surgery and called on his colleagues for recommendations for a cardiovascular surgeon.

"Anyone who has kidney or prostate surgery is going to have trepidation about it; there's no denying that," says Dr. Bernstein. "The trepidation before open-heart surgery is even greater, and I had some of that."

His research led him to Robert Wiechmann, M.D., at Mayo Clinic Health System in Eau Claire, Wisconsin. Dr. Wiechmann and the surgery team perform a minimally invasive procedure to insert a mechanical valve through a small incision in the right chest, providing the same result as traditional open-heart surgery.

"It wasn't just that I got a thumbs up on Dr. Wiechmann, it was the credentials of the people who gave him a thumbs up," says Dr. Bernstein. "It's one thing to ask friends on Facebook, but when you talk to senior cardiac surgeons around the country, and they give a thumbs up — to me, that gives it a lot of clout."

The reputation that Dr. Wiechmann and the Mayo Clinic Health System cardiac surgery team have established around the country led Dr. Bernstein to determine he would have his surgery in Eau Claire.

"I made the decision to drive a few hundred miles to get the best possible treatment for my particular condition. I left a big city — with a big academic, highly regarded medical center — to go to the relatively small city of Eau Claire because I thought it was that important of an investment to make," he says.

Care like clockwork

After deciding to have Dr. Wiechmann perform the aortic valve replacement, Dr. Bernstein was scheduled for a pre-op physical exam and bloodwork.

"I drove to Eau Claire, and everything went like a Swiss watch. And that's very reassuring for someone who's going to have surgery," he says. "The trepidation balanced with my confidence in the surgeon, his team and the health system."

Several weeks later, Dr. Bernstein returned to Eau Claire for the surgery.

"The cardiothoracic surgery team at Mayo Clinic Health System is leading the field in bringing the latest advances in cardiac surgery to patients," says Dr. Wiechmann. "The team specializes in performing minimally invasive surgical procedures, which provide a quicker, less painful recovery to help people, like Dr. Bernstein, get back to doing the activities they enjoy sooner."

A remarkable recovery

Following the successful surgery, Dr. Bernstein was moved to the ICU.

"The pain was well-controlled; it was uncomfortable, but not horrible. I was less uncomfortable than I expected," he says.

Dr. Bernstein had been told to expect to be in the hospital for four to six days to regain strength and monitor his heart. By Sunday, just two days after surgery, he felt pretty good.

On Monday morning, Dr. Wiechmann checked on his patient and, after the exam, didn't find a reason to keep him in the hospital any longer.

"Dr. Bernstein's active lifestyle and good physical health before his surgery played a role in his rapid recovery in the hospital," says Dr. Wiechmann.

Although his inpatient stay was short, Dr. Bernstein appreciated his interactions with the care team.

"All of the touchpoints that I had when I was there were outstanding, from the nurses at the bedside managing all the tubes and fluids, the X-ray people who took my picture every morning, Dr. Wiechmann's nurse practitioner, physician assistant and the housekeeping and dietary people. All the people, without fail — everyone was professional and compassionate," says Dr. Bernstein.

The at-home preparations done in advance for his recovery, including obtaining a shower chair, turned out to be unnecessary. Showering, dressing and moving around the house proved to be easier than he had expected.

Getting back on the bike

For the next two weeks, Dr. Bernstein stayed active by walking in the local mall. Three weeks after the surgery, he was anxious to get back on his exercise bike.

Dr. Wiechmann agreed he could start slowly with a low-resistance, 20-minute ride. With no issues from the initial biking exercise, Dr. Bernstein continued to increase his activity level and duration.

By Thanksgiving weekend, just four weeks after surgery, he was ready to ride his snow bike with studded tires outside in the crisp fall weather.

Although Dr. Bernstein felt well enough to return to work after just six weeks, he took the recommended 12 weeks off. By then, he was back to 100% health with no deficiencies after the surgery and ready to rejoin his busy medical practice.

While the routine post-op follow-up visit is typically done in person at the hospital, Dr. Bernstein was able to do his post-op appointment using telehealth with Dr. Wiechmann's nurse practitioner.

"The incision is basically invisible. It looks like a plastic surgeon closed it," says Dr. Bernstein.

Going forward

Dr. Bernstein continued his heart care with his cardiologist after the surgery and recovery. A postoperative echocardiogram was performed to look at his heart and establish a new baseline. The echocardiogram showed a typical result for heart function.

"So the beginning of hypertrophy of the left ventricle has resolved, as Dr. Wiechmann suspected it would, and my heart is normal after the aortic valve replacement," says Dr. Bernstein.

"Treating complex cardiac conditions with a minimally invasive approach provides the best outcome possible for candidates of the surgery," explains Dr. Wiechmann. "The goal is to provide the highest-quality heart care for our patients."

With his background in healthcare leadership, Dr. Bernstein is experienced in evaluating care to look for opportunities to increase efficiency, decrease cost or improve patient experience.

"As I look back on my experience with heart surgery, I can't find anything to improve. I couldn't recommend Dr. Weichmann and his team more strongly for patients with surgical heart valve disease."

This article first published on the Mayo Clinic Health System blog.

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Ceramide testing reveals risk of heart attack https://newsnetwork.mayoclinic.org/discussion/ceramide-testing-reveals-risk-of-heart-attack/ Sun, 20 Aug 2023 10:00:00 +0000 https://newsnetwork.mayoclinic.org/?p=372777 Red meat and high-starch foods like mashed potatoes were the family fare while Stephanie Blendermann was growing up in Long Island, New York. Her father was a butcher after all, and a smoker, who eventually required bypass surgery for clogged arteries. And tragically, three of her sisters died prematurely (in their 40s and 50s) from […]

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Red meat and high-starch foods like mashed potatoes were the family fare while Stephanie Blendermann was growing up in Long Island, New York. Her father was a butcher after all, and a smoker, who eventually required bypass surgery for clogged arteries. And tragically, three of her sisters died prematurely (in their 40s and 50s) from heart attacks. So as she approached 65, even though her LDL (or “bad”) cholesterol levels were fine, Stephanie was concerned her family history might catch up with her. At Mayo Clinic, she underwent ceramide testing, a novel assay that can reveal more about heart disease and stroke risk than standard lipid tests.

“I’m sure my sisters’ early deaths were partly from lifestyle, and from smoking, which I never took up,” says Stephanie, a real estate agent based in Prior Lake, Minnesota, who specializes in executive relocation for top corporations. “It’s pretty devastating to think here I am now, just about 65, and they didn't get to live full lives and see all the things I've seen.”

Stephanie came under the care of cardiologist Vlad Vasile, M.D., Ph.D., co-director of Mayo Clinic’s Clinical Specialty Laboratory and medical director of the Cardiovascular Health Clinic, who recommended ceramide testing. “Coronary artery disease and plaque formation are both very complex processes,” says Dr. Vasile. “I think the more tests we have, to assess cardiovascular risk of a specific patient, the better off we are. One of these tests is the ceramide score that we developed here at Mayo Clinic, and I use it extensively in my practice.”

Ceramides are sphingolipids, found everywhere in our body. Though they are “ubiquitously expressed,” the test focuses primarily on three ceramides of cardiovascular interest. “The beauty of these three ceramides is they’re involved in different pathways,” says Dr. Vasile. “All of them are involved in plaque formation, some reflect inflammation, some of these ceramides reflect the bad cholesterol, and some coagulation or thickening of the blood.”

Jeff Meeusen, Ph.D., co-director of the Clinical Specialty Laboratory, chimes in: “I think ceramides are a very biologically active group of signal molecules. So, whereas cholesterol is more or less a scaffolding, a building block that the cells can use to make other things, these ceramides seem to be specific actors in these different roles. So when they're imbalanced they seem to have a stronger physiological signal that informs our ceramide test.”

A simple number correlates with heart attack risk

The ceramide test uses liquid chromatography-mass spectrometry technology, which sorts through complex molecular compounds and then renders an algorithmic score — a simple number that places the patient in a “bucket” of risk. For clinicians, it’s easy to interpret because this number is correlated with one of four categories of risk, from low risk to very high risk.

Stephanie’s ceramide score was an 8, which put her at higher risk for a heart attack. The score was “eye-opening” to her because she had long ago cut out red meat and was staying active. Still, she noticed shortness of breath on walks, especially when trying to take hills, as well as achiness and a lack of energy.

“I couldn't figure out what was wrong with me,” says Stephanie, who also suffers from a connective tissue disorder, a chronic inflammatory condition that can contribute to coronary plaque formation. “I just knew I wasn’t myself. But I wasn’t having heart pain or anything else. And I just figured the achiness was from the statin I was on. But we found out from the ceramide test that I have certain ceramides where you get a thickening of the blood in your body, in your arteries and whatnot. And it just doesn’t let the body act as efficiently as it should even though my cholesterol was going down.”     

Ceramide testing is not the only assay for assessing cardiovascular risk. Cardiologists like Dr. Vasile also use traditional blood tests like the lipid panel and lipoproteins as blood biomarkers to indicate coronary artery disease risk factors. There’s also a coronary calcium score and ECG chest X-ray, among others.

“WE’RE LOOKING AT MANY, MANY THINGS, NOT JUST ONE PARAMETER,” EMPHASIZES DR. VASILE. “WE ALSO HAVE CERTAIN CALCULATORS WHERE WE PLUG IN ALL THESE CLINICAL PARAMETERS, LIKE BLOOD DATA SUCH AS CHOLESTEROL, AND THE DEMOGRAPHICS OF THE PATIENT. AND THESE CALCULATORS RENDER A CERTAIN RISK FOR DEVELOPING HEART ATTACKS AND STROKES WITHIN THE NEXT 10 YEARS, OR OVER THE LIFETIME, FOR EXAMPLE. BUT WE KNOW VERY WELL THAT THESE CALCULATORS ARE FAR FROM BEING PERFECT. THERE IS A LOT OF CRITICISM WITH THESE CALCULATORS BECAUSE CORONARY ARTERY DISEASE AND PLAQUE FORMATION ARE, AS I’VE SAID, VERY COMPLEX PROCESSES.”

Dr. Vasile puts a high value on ceramide testing because it rises above such calculators to better inform him on treatment plans for patients like Stephanie. “When you look at a traditional biomarker, such as a lipid profile, it really only looks at the LDL or bad cholesterol that deposits on the plaque,” he says. “So it’s just one risk factor out of the many risk factors. But the ceramide score is a more comprehensive biomarker because it looks at three different pathways that are involved in plaque formation. So, I trust the ceramide score more than just a simple biomarker like the lipid profile.”

Dr. Meeusen adds, “We would still recommend starting with the standard lipid assessment and other risk factors. And when there is intermediate risk and you’re trying to gauge how aggressive you want to take your treatment plan, the ceramide test is designed to help with that scenario.”

A new lease on life

Once he knew Stephanie’s ceramide test score, Dr. Vasile refined her statin medication. “Mrs. Blendermann’s ceramide score of 8 placed her at high cardiovascular risk,” he says. “So this number told me that we needed to be aggressive. We needed to not only address her lifestyle with diet and exercise, but we also needed to be more aggressive with lowering her lipids, her LDL cholesterol.”

The LDL target for the average population should be less than 100 milligrams per deciliter. But given Stephanie’s ceramide score, Dr. Vasile recommended an LDL target of less than 70 milligrams per deciliter. A higher LDL level is always correlated with heart attacks and strokes; thus, the lower the LDL, the lower the risk of developing these events down the line.

As for lifestyle changes, Dr. Vasile recommended that Stephanie improve her dietary habits. “When I first saw her, she was not following a perfect diet, but she was not on a bad diet either,” he says. “We did have her talk with our dietician in the Cardiovascular Health Clinic, who recommended a Mediterranean diet, and she really changed her diet accordingly. We also recommended initiation of a systematic aerobic exercise. She talked with our cardiovascular physiologist who tailored her exercise program at home. So she did both these things. She is a very compliant patient.”

Dr. Meeusen also advocates diet and exercise. “People with high ceramides received a stronger benefit than those with normal ceramides when they were on the Mediterranean diet intervention,” he says. “The ceramide score can respond quickly to improved diet and increased exercise, which can motivate patients to maintain their healthy lifestyle changes.”

TODAY, STEPHANIE FEELS LIKE A NEW PERSON WHO IS BETTER ABLE TO ENJOY HER ACTIVE LIFE. AND SHE NOW LOOKS FORWARD TO MANY YEARS AHEAD. “MY CERAMIDE TEST SCORE REALLY PUT ME IN HIGH GEAR TO MAKE CHANGES,” SHE SAYS. “IT’S AMAZING HOW YOU CAN ADJUST YOUR WAY OF THINKING AND DESIRES OF WHAT YOU WANT TO EAT. AND WITH DR. VASILE’S TREATMENT, IT’S MADE A REMARKABLE DIFFERENCE, REALLY A REMARKABLE DIFFERENCE.”

It’s also a little bittersweet for Stephanie, who adds, “Had my sisters had ceramide testing, and had they had this type of great medicine at Mayo, I think that would have given them longer lives.”

This article originally appeared on the blog of Mayo Clinic Laboratories.

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Embracing wellness following massive heart attack https://newsnetwork.mayoclinic.org/discussion/embracing-wellness-following-massive-heart-attack/ Sun, 30 Jul 2023 10:00:00 +0000 https://newsnetwork.mayoclinic.org/?p=371287 Editors note: This is a first-person account written by Kim Sidlak I was 46 years old when I had a massive heart attack. It was a Wednesday evening, June 4, 2014. It was a day I will never forget. My grandmother and mother both died from heart issues in their early fifties, so I knew […]

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Kim Sidlak standing on a field of grass with trees in the background.

Editors note: This is a first-person account written by Kim Sidlak

I was 46 years old when I had a massive heart attack. It was a Wednesday evening, June 4, 2014. It was a day I will never forget. My grandmother and mother both died from heart issues in their early fifties, so I knew heart disease ran in my family. I had read about heart disease in women, eating healthy, staying active, and keeping my cholesterol low. I tried to do all those things. However, six months before my heart attack, my doctor put me on high cholesterol medication. The reason was because I could not get my numbers low enough with diet and exercise alone.

I was working out regularly and actively enrolled in an 8-week boot camp fitness program.  Then one evening, I came home with back pain between my shoulder blades. I assumed it was muscle related.  I then talked to my trainer to let him know about my family history but, we kept moving forward with working out. Three weeks later I experienced the same pain again, however this time it got increasingly more painful, I laid down and told my husband to call 911. Due to my knowledge through reading about heart disease in women, I felt like this medical concern could be heart related.

By the time the ambulance arrived, I was in excruciating pain. I remember throwing up and getting cold sweats. I passed out as the paramedics were taking me down the steps. Looking back now, I can remember them hitting me telling me and saying, “Stay with us!” As I arrived at the Emergency Department, a defibrillator was used to revive me. I was taken back to have surgery immediately. My main artery was 100% blocked and a stent was inserted to restore blood flow to my heart.

For one month my recovery included cardiac rehabilitation. It also involved being placed on multiple medications for years afterwards. I was excited about going to cardiac rehabilitation because I was active before my heart attack and wanted to be active again as soon as I could. Cardiac rehabilitation involved exercising three times a week while being monitored. Once a week I would receive education about heart disease, exercise, eating healthy, and my current medications. After the month of cardiac rehabilitation was complete, I was instructed to have someone with me while exercising which I did.

Nine years after the heart attack I follow a healthy diet, exercise daily, and pay attention to any signs or symptoms of heart disease. My diet consists of low-fat proteins including fruits and vegetables. I also eat good carbohydrates including oatmeal and whole wheat breads. I see my primary doctor and cardiologist yearly. I also monitor my blood pressure at home. Fortunately, I am currently only taking one medication.    

Looking back on this experience, the most useful advice I would pass along is to stay active, follow a heart healthy diet, and manage stress as much as possible. Even moderate activity like walking is so important to our health but all these actions collectively play a role in being healthy. Be sure to talk with your doctor if you have any concerns about heart health. Know your numbers as far as blood pressure and cholesterol. I learned that heart disease does not just happen to individuals that lead an unhealthy lifestyle and I hope that my story resonates with others. I have found that total wellness requires taking care of yourself physically, emotionally, and spiritually.

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