HCM Archives - Mayo Clinic News Network https://newsnetwork.mayoclinic.org/ News Resources Tue, 26 Mar 2024 13:11:46 +0000 en-US hourly 1 https://wordpress.org/?v=6.8.2 Spotlight on early detection of 3 heart diseases using ECG-AI  https://newsnetwork.mayoclinic.org/discussion/spotlight-on-early-detection-of-3-heart-diseases-using-ecg-ai/ Thu, 22 Feb 2024 12:30:00 +0000 https://newsnetwork.mayoclinic.org/?p=382201 ROCHESTER, Minn. — Too often, the first sign of cardiovascular disease may be a major event like a heart attack, stroke or cardiac arrest. Now, researchers and clinicians at Mayo Clinic are using artificial intelligence (AI) technology to flag heart problems earlier, boosting the abilities of a diagnostic test that has been around for over […]

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ROCHESTER, Minn. — Too often, the first sign of cardiovascular disease may be a major event like a heart attack, stroke or cardiac arrest. Now, researchers and clinicians at Mayo Clinic are using artificial intelligence (AI) technology to flag heart problems earlier, boosting the abilities of a diagnostic test that has been around for over a century — the electrocardiogram (ECG).   

Early detection of heart disease can make a significant difference in a patient's quality of life and longevity, but a lack of defining symptoms adds complexity. The AI-enabled ECG provides a way to potentially detect heart disease earlier and track disease progression using a test that is relatively inexpensive, readily available and often already part of a patient's electronic health record.

Mayo Clinic has developed ECG-AI algorithms that are currently used in research to predict a patient's likelihood of having heart conditions like atrial fibrillation, amyloidosis, aortic stenosis, low ejection fraction, hypertrophic cardiomyopathy (HCM) and more. The AI can also predict a patient's biological age using traditional 12-lead and single-lead ECGs from smartwatches and portable devices.

One standout application is the use of ECG-AI to detect low ejection fraction, commonly called a weak heart pump. The 12-lead algorithm for detecting this condition is cleared for clinical use by the Food and Drug Administration (FDA) and licensed to Anumana. A single-lead algorithm for handheld devices externally applied to the chest is licensed to Eko Health for commercial development.

Diagnosing a weak heart pump

Approximately 3% of Americans have a treatable condition called low ejection fraction, where the heart is weakened and pumps less blood out to the body. The underlying causes and symptoms are often treatable, but people may not be aware of their condition until symptoms such as shortness of breath, fatigue and swelling in their legs start to get worse. Left untreated, low ejection fraction can progress to worsening heart failure, affecting quality of life and potentially become severe enough to require a heart transplant or lead to cardiac arrest.

Unfortunately, the symptoms of a weak heart pump can be confused with those seen with normal pregnancy. At Mayo Clinic in Florida, Demilade Adedinsewo, M.B., Ch.B., a cardiologist, uses AI as a tool to detect a condition in women called peripartum cardiomyopathy, a weak heart pump that can develop during pregnancy or shortly after giving birth. Heart muscle weakness can be predicted with AI from a traditional 12-lead ECG and from an AI-enabled digital stethoscope that captures single-lead ECG and heart sound recordings.

"Our research with obstetric patients in Nigeria suggests that portable technology like the AI-enabled digital stethoscope has the potential to flag twice as many cases of peripartum cardiomyopathy as compared to routine care," says Dr. Adedinsewo. "It may be a powerful tool to bring portable cardiomyopathy diagnostics to more women in underserved urban and rural populations around the world. Access is an important consideration in addressing health disparities in the U.S., because Black women have up to a sixteenfold greater risk of developing peripartum cardiomyopathy, compared to white women."

Watch: Dr. Demilade Adedinsewo explains peripartum cardiomyopathy in this Mayo Clinic Minute

Amyloid buildup in the heart

Amyloidosis is a rare disease of misfolded proteins that go astray to form deposits of amyloid in organs, nerves and tissues. There are several different types, but when enough amyloid builds up in the heart, it causes heart failure and symptoms such as shortness of breath, fluid buildup and fainting. Patients also can have heart rhythm problems and might need a pacemaker. Early diagnosis is critical because, while amyloidosis is not curable, it is treatable with new medical therapies that can dramatically reduce the amount of amyloid produced and stop disease progression.

Using ECG-AI, clinicians at Mayo Clinic can potentially flag patients who are in the early stages of cardiac amyloidosis. The technology is used in research and has FDA breakthrough device designation.

"We've done some research indicating that, if we apply artificial intelligence just to the electrocardiogram, we can suggest if the patient has the diagnosis, often before a clinician has even suspected it. So we believe that this is a way to make an early diagnosis," says Martha Grogan, M.D., a cardiologist at Mayo Clinic in Rochester, Minnesota. "Now, it has to be put in clinical context. It's not just that one AI ECG, but it can really help us suspect amyloidosis."

"It's a very powerful tool because it's inexpensive. It's available almost everywhere. Our research showed that even a single lead, which is something that you could do on a watch or a simple mobile device, can give us this prediction of amyloidosis," says Dr. Grogan. "So, one could imagine that, in underserved populations throughout the world, a simple ECG might help determine if a patient has amyloidosis, especially in those high-risk groups."

Watch: Dr. Martha Grogan discusses detecting cardiac amyloidosis using AI and the ECG

Journalists: Broadcast-quality sound bites with Dr. Grogan are available in the downloads at the end of the post. Please courtesy: "Mayo Clinic News Network." Name super/CG: Martha Grogan, M.D./Cardiovascular Medicine/Mayo Clinic.

Hypertrophic cardiomyopathy

Hypertrophic cardiomyopathy is one of the most common genetic heart diseases, affecting 1 in 200 to 500 people. HCM happens when the heart's walls become thicker over time, which can disrupt the heart's electrical signals, increasing the risk of sudden cardiac death. Unfortunately, people often don't notice any symptoms until the disease progresses. It's like having a silent intruder in your heart.

Early detection is crucial but challenging. HCM does not always show up on basic tests, such as a 12-lead ECG. Most patients would not be referred to more resource-intensive tests, like an echocardiogram or MRI, unless a problem was suspected. But ECG-AI can spot HCM by recognizing subtle patterns that even expert clinicians might miss.

"Applying this AI algorithm to routine ECGs shows promise as a means to make early detection of HCM more practical, accurate and accessible as part of a heart health checkup," says Konstantinos Siontis, M.D., a cardiac electrophysiologist at Mayo Clinic in Rochester. "Athletes with yet undiagnosed HCM, who may be more at risk of dangerous arrhythmias during exercise, could benefit from early detection. And because HCM often runs in families, detecting it early in one person can lead to identifying other family members at risk."

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About Mayo Clinic 
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Sharing Mayo Clinic: A heart patient’s fall picks up something big https://newsnetwork.mayoclinic.org/discussion/sharing-mayo-clinic-a-heart-patients-fall-picks-up-something-big/ Sun, 15 May 2022 10:00:00 +0000 https://newsnetwork.mayoclinic.org/?p=338241 Mitch Prust has fond memories of spending long hours hiking the trails at his getaway in northwestern Wisconsin, but during a visit in late September, it's what he didn't remember that put him on a new path. It was not hours or minutes; it was just a few seconds. While this was a short lapse […]

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Mitch Prust has fond memories of spending long hours hiking the trails at his getaway in northwestern Wisconsin, but during a visit in late September, it's what he didn't remember that put him on a new path. It was not hours or minutes; it was just a few seconds. While this was a short lapse of time, the positive result of this experience will last a lifetime.

Around 9 p.m. while walking through the woods with his wife to his residence, he jokingly pretended to hear an animal and sprinted a few yards. He then fell on his face and sustained a bloody nose.

He doesn't recall falling or his wife flipping him over onto his back. He thought he tripped. The couple rested a few minutes, continued home and retired for the evening. The next morning, Mitch woke up with a new curiosity. Did he simply stumble, or was there another reason?

He was asking these questions because he has a serious heart condition.

In 2014, before becoming a patient at Mayo Clinic, the 55-year-old inventor and tech industry executive from St. Paul, Minnesota, was diagnosed with a heart murmur. Three years later, in 2017, Mitch was asked by his new doctor in the same practice how he was managing those initial findings. That's because, in addition to the murmur, he was told for the first time that those earlier tests indicated that he might have a complex disease that affects 1 in 500 people: hypertrophic cardiomyopathy (HCM).

a medical illustration of a normal heart and one with hypertrophic cardiomyopathy

Mitch says that was news to him, and that motivated him to search for answers. "This was super concerning for me because I felt I learned about potentially having hypertrophic cardiomyopathy back in 2014."

After researching centers of excellence on hypertrophic cardiomyopathy and reading a story on Sharing Mayo Clinic, Mitch sought care with Jeffrey Geske, M.D., a Mayo Clinic cardiologist. After extensive testing and evaluation, Mitch's questions were answered. And there was no doubt he had hypertrophic cardiomyopathy.

"Hypertrophic cardiomyopathy is a condition where the heart muscle becomes too thick. Because of this thickening, blood flow exiting the heart can become obstructed. The most common symptoms associated with hypertrophic cardiomyopathy are chest pain or shortness of breath. However in a small group of patients, unfortunately, the first symptom can be sudden cardiac death," says Dr. Geske.

With the new diagnosis, Dr. Geske and the team designed a treatment plan with Mitch, who has always been active. In high school, he wrestled, played football and ran track. Even as an adult with hypertrophic cardiomyopathy, he continued to play in hockey leagues under the close supervision of his care team.

He is also a big fan of the Minnesota Wild hockey team, and it was attending their games that he noticed a steep deterioration in his stamina.

"In the beginning with my diagnosis of HCM, I was asymptomatic. But I noticed that when I'd go up a few flights of stairs at the arena, I felt like I'd hit a wall, and get lightheaded and be on the verge of fainting."

After noticing he was tiring more easily and after more evaluation, Mitch and Dr. Geske determined that a septal myectomy would be his best option. During this open-heart procedure, the surgeon removes part of the thickened, overgrown heart wall between the heart chambers, called the septum. This procedure seeks to improve blood flow out of the heart and reduce backward flow of blood through the mitral valve. Mitch says that after Hartzell Schaff, M.D., a Mayo Clinic cardiovascular surgeon, performed the procedure, he felt better immediately.

Still feeling great about six months after his surgery during a routine checkup, Mitch followed up with Dr. Geske. Mitch's EKG, a test to evaluate electrical signals in the heart, showed that Mitch had developed a left bundle branch block, which is a delay in the pathway of electrical impulses that make the heart beat.

Dr. Geske explained that this is a common finding seen in nearly half of patients who undergo septal myectomy. Although Mitch had a different "electrical fingerprint" after surgery, his heart rhythm was still normal. Dr. Geske asked Mitch if he would be interested in participating in a study looking for abnormal heart rhythms, such as atrial fibrillation or ventricular tachycardia in patients with hypertrophic cardiomyopathy who do not have a history of any abnormal heart rhythm.

Mitch is dedicated to helping others with hypertrophic cardiomyopathy, especially contributing to data to learn more about the disease, so when Dr. Geske asked if he'd be interested in the study he said yes.

"I just really wanted to help. I was doing so well. It was to benefit other people, and, you know, there was a chance it could pick something up," says Mitch.

A portion of the study involved implanting a device smaller than a AAA battery under the skin. This device continuously recorded heart rhythm data. While visiting Mayo in December 2020 to take part in another study, Mitch had the loop recorder implanted by Konstantinos Siontis, M.D, Heart Rhythm Services. The placement of that recorder may have saved his life.

About a year later and back to the Wisconsin woods — the day after his fall — Mitch sent a message to Dr. Geske asking if the device indicated any unusual heart activity that night. After receiving the message, the health care team called Mitch, asking how quickly he could get to Mayo Clinic in Rochester, Minnesota. The loop recorder data showed that Mitch's heart stopped beating for 10 seconds.

After Drs. Geske and Siontis evaluated the data and examined Mitch, he was diagnosed with an episode of complete heart block. "Because of Mitch's surgery, he was more dependent on the other side of his conduction system — the right bundle branch. When this side unexpectedly stopped working correctly, nothing told Mitch's heart to beat. Without the loop recorder, we would not have known what Mitch's heart rhythm was when he passed out. It really clarified what was going on."

To prevent this from happening again, Mitch had a pacemaker implanted right away. "His pacemaker now prevents him from having his heart stop beating again," says Dr. Geske. "I suspect he will do quite well. Patients with pacemakers can lead normal lives. Mitch's surgery was very successful at alleviating his obstruction, but he still needs regular follow-up of his HCM to ensure we keep his heart 'tuned up.'"

Mitch agrees with Dr. Geske and says he is doing quite well these days. He looks forward to creating new memories in the woods of Wisconsin, attending a lot more hockey games and educating others about hypertrophic cardiomyopathy. He wants people to know how to identify symptoms at any age and ways to diagnose and treat hypertrophic cardiomyopathy — all with the goal of doing his small part to save lives and improve the quality of life for fellow patients living with this disease.

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Sex and race disparities found in management of patients with hypertrophic cardiomyopathy in the hospital https://newsnetwork.mayoclinic.org/discussion/sex-and-race-disparities-found-in-management-of-patients-with-hypertrophic-cardiomyopathy-in-the-hospital/ Tue, 07 Dec 2021 10:00:00 +0000 https://newsnetwork.mayoclinic.org/?p=326298 ROCHESTER, Minn. — In recent decades, implantable cardioverter-defibrillator (ICD) use in the management of patients with hypertrophic cardiomyopathy (HCM) has increased. However, a new Mayo Clinic study finds that ICDs are not used as often for female patients and patients of color. Data from the National Inpatient Sample, an all-payer administrative database of inpatient hospitalizations, […]

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ROCHESTER, Minn. — In recent decades, implantable cardioverter-defibrillator (ICD) use in the management of patients with hypertrophic cardiomyopathy (HCM) has increased. However, a new Mayo Clinic study finds that ICDs are not used as often for female patients and patients of color. Data from the National Inpatient Sample, an all-payer administrative database of inpatient hospitalizations, showed disparities regarding which patients commonly receive this therapy in the hospital. The data also revealed regional variations in the overall use of ICDs in patients with hypertrophic cardiomyopathy.

Hypertrophic cardiomyopathy is a disease in which the heart muscle becomes abnormally thick, making it harder for the heart to pump blood. This may cause chest pain, shortness of breath or problems with the heart's electrical system that can result in arrythmias or even sudden death. Medications and surgical procedures can be used to address the symptoms of hypertrophic cardiomyopathy. Some patients are still at risk of cardiac arrest and opt to receive an implantable cardioverter-defibrillator, which continuously monitors their heartbeat and delivers precise electrical shocks when needed to restore a normal heart rhythm. 

"Racial disparities exist in hypertrophic cardiomyopathy with regards to disease expression and worse outcomes. As with sex-specific differences, this could be the results of systemic bias with inequity of clinical care. The fact that ICD use is more common in large and teaching hospitals suggests that patients in smaller hospitals may not have access to specialists in hypertrophic cardiomyopathy management. Improving access to centers offering the highest level of specialized care may help reduce these disparities. How our findings relate to care access, socioeconomic status and patient-shared decision-making warrants further study," says Sri Harsha Patlolla, M.B.B.S., a postdoctoral fellow in the Department of Cardiovascular Surgery at Mayo Clinic.

Dr. Patlolla is first author of the study, which identified 23,535 adult hospitalizations for hypertrophic cardiomyopathy during a 12-year time span. Study findings are published in Mayo Clinic Proceedings. The proportion of these patients who received an ICD increased from 11.6% in 2003 to 17% in 2014. Regional differences reflected overuse in some areas of the country and underuse in others. Women had a lower proportion of ICD use compared to men across the study period; 12.8% versus 22.7% respectively. Women also had higher rates of ventricular arrhythmias, being more likely to receive an ICD after experiencing heart electrical issues. Other studies have revealed that women with hypertrophic cardiomyopathy are diagnosed later and show more symptoms as compared to men.

"With those findings in mind, several different explanations could support our results," says Jeffrey Geske, M.D., a cardiologist at Mayo Clinic. "It is possible that focusing on symptom management shifts focus away from sudden death risk assessment in women more than men, and shared decision-making may result in different choices between sexes. In combination with current findings, these suggest a need for providers to recognize sex-specific differences in outcomes and management trends in women with hypertrophic cardiomyopathy."

ICD use was similar across all races, but differences became apparent when considering patient demographics by race. Compared to white patients admitted to the hospital for hypertrophic cardiomyopathy, patients of color were younger, less affluent and more likely to receive care at a teaching hospital. Patients of color also showed higher incidence of hypertension, kidney disease and atrial fibrillation.

"The ICD trends raise important questions about the underlying causes of these disparities," says co-author Steve Ommen, M.D., a cardiologist and medical director of the Mayo Hypertrophic Cardiomyopathy Clinic. "Why are patient outcomes different based on sex and race? Does this reflect an inherent bias, or is it the result of underlying differences in disease expression? As further studies are pursued, providers should seek to eliminate potential bias in ICD decision-making, given the known mortality benefit associated with appropriate ICD implantation."

"Sudden cardiac death risk stratification and ICD decision-making are pillars of clinical care of patients with hypertrophic cardiomyopathy. Despite growing recognition of this disease, the degree of inequity across patient populations was quite surprising," says Hartzell Schaff, M.D., a cardiovascular surgeon at Mayo Clinic and senior author of the study.

"Regardless of whether this inequity reflects access to care, provider bias, disease expression, shared decision-making or another explanation, I believe that greater access to multidisciplinary hypertrophic cardiomyopathy centers with graduated levels of expertise remains important for the best possible care of patients with HCM, a finding highlighted in the most recent ACC/AHA guidelines," says Dr. Schaff.

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Connecting Patients: Talking about hypertrophic cardiomyopathy https://newsnetwork.mayoclinic.org/discussion/connecting-patients-talking-about-hypertrophic-cardiomyopathy/ Fri, 14 Feb 2020 00:26:59 +0000 https://newsnetwork.mayoclinic.org/?p=262143 Hypertrophic cardiomyopathy (HCM) is a disease in which the heart muscle (myocardium) becomes abnormally thick (hypertrophied). The thickened heart muscle can make it harder for the heart to pump blood. Hypertrophic cardiomyopathy often goes undiagnosed because many people with the disease have few, if any, symptoms and can lead normal lives with no significant problems. […]

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a medical illustration of a normal heart and one with hypertrophic cardiomyopathy

Hypertrophic cardiomyopathy (HCM) is a disease in which the heart muscle (myocardium) becomes abnormally thick (hypertrophied). The thickened heart muscle can make it harder for the heart to pump blood.

Hypertrophic cardiomyopathy often goes undiagnosed because many people with the disease have few, if any, symptoms and can lead normal lives with no significant problems. However, in a small number of people with HCM, the thickened heart muscle can cause shortness of breath, chest pain or problems in the heart's electrical system, resulting in life-threatening abnormal heart rhythms (arrhythmias).

Join the Hypertrophic Cardiomyopathy page on
Mayo Clinic Connect
Share stories, resources
and find other useful information. 

"I was officially diagnosed with HCM about 3 years ago, however, I have been feeling the symptoms since childhood. I always felt something was wrong and have been to the cardiologist many times and they didn’t find anything until about 8 years ago, a very pronounced murmur appeared and they were looking into what was causing it."- Mayo Clinic Connect Member

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Infographic for Hypertrophic Cardiomyopathy

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Hypertrophic Cardiomyopathy/Sacroiliac Joint Pain/Hot Tub Safety: Mayo Clinic Radio https://newsnetwork.mayoclinic.org/discussion/hypertrophic-cardiomyopathysacroiliac-joint-painhot-tub-safety-mayo-clinic-radio/ Sun, 28 Feb 2016 20:14:09 +0000 https://newsnetwork.mayoclinic.org/?p=84467 During American Heart Month ... a personal story of how a routine express care visit for the flu uncovered a potentially life-threatening heart condition. On the next Mayo Clinic Radio, Mayo Clinic Department of Public Affairs communications director Ron Petrovich shares his personal story about being diagnosed with hypertrophic cardiomyopathy (HCM). And heart disease specialist Dr. Jeffrey […]

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During American Heart Month ... a personal story of how a routine express care visit for the flu uncovered a potentially life-threatening heart condition. On the next Mayo Clinic Radio, Mayo Clinic Department of Public Affairs communications director Ron Petrovich shares his personal story about being diagnosed with hypertrophic cardiomyopathy (HCM). And heart disease specialist Dr. Jeffrey Geske joins the discussion about why it's critical to get treatment for HCM. Also on the program, orthopedic surgeon Dr. William Cross explains how the sometimes overlooked sacroiliac joints can cause of chronic back pain. And Dr. Thomas Allison answers the question, "Are hot tubs safe ... and can using them be good for your health?" Dr. Allison is director of the Sports Cardiology Clinic and the Integrated Stress Testing Center at Mayo Clinic.

Here's the Mayo Clinic Radio podcast.

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Mayo Clinic Radio: Hypertrophic Cardiomyopathy/Sacroiliac Joint Pain/Hot Tub Safety https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-radio-hypertrophic-cardiomyopathysacroiliac-joint-painhot-tub-safety/ Thu, 25 Feb 2016 20:00:35 +0000 https://newsnetwork.mayoclinic.org/?p=84389 During American Heart Month ... a personal story of how a routine express care visit for the flu uncovered a potentially life-threatening heart condition. On the next Mayo Clinic Radio, Mayo Clinic Department of Public Affairs communications director Ron Petrovich shares his personal story about being diagnosed with hypertrophic cardiomyopathy (HCM). And heart disease specialist […]

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person drawing a heart and heartbeat
During American Heart Month ... a personal story of how a routine express care visit for the flu uncovered a potentially life-threatening heart condition. On the next Mayo Clinic Radio, Mayo Clinic Department of Public Affairs communications director Ron Petrovich shares his personal story about being diagnosed with hypertrophic cardiomyopathy (HCM). And heart disease specialist Dr. Jeffrey Geske joins the discussion about why it's critical to get treatment for HCM. Also on the program, orthopedic surgeon Dr. William Cross explains how the sometimes overlooked sacroiliac joints can cause of chronic back pain. And Dr. Thomas Allison answers the question, "Are hot tubs safe ... and can using them be good for your health?" Dr. Allison is director of the Sports Cardiology Clinic and the Integrated Stress Testing Center at Mayo Clinic.

Myth or Matter-of-Fact: Hypertrophic cardiomyopathy affects far more men than it does women.

Listen to the program at 9:05 a.m. CT, Saturday, February 27 and follow #MayoClinicRadio.

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Mayo Clinic Radio: Hypertrophic Cardiomyopathy/Sacroiliac Joint Pain/Hot Tub Safety https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-radio-hypertrophic-cardiomyopathysacroiliac-joint-painhot-tubs-and-health/ Mon, 22 Feb 2016 12:46:16 +0000 https://newsnetwork.mayoclinic.org/?p=84087 During American Heart Month ... a personal story of how a routine express care visit for the flu uncovered a potentially life-threatening heart condition. On the next Mayo Clinic Radio, Mayo Clinic Department of Public Affairs communications director Ron Petrovich shares his personal story about being diagnosed with hypertrophic cardiomyopathy (HCM). And heart disease specialist Dr. Jeffrey […]

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During American Heart Month ... a personal story of how a routine express care visit for the flu uncovered a potentially life-threatening heart condition. On the next Mayo Clinic Radio, Mayo Clinic Department of Public Affairs communications director Ron Petrovich shares his personal story about being diagnosed with hypertrophic cardiomyopathy (HCM). And heart disease specialist Dr. Jeffrey Geske joins the discussion about why it's critical to get treatment for HCM. Also on the program, orthopedic surgeon Dr. William Cross explains how the sometimes overlooked sacroiliac joints can cause of chronic back pain. And Dr. Thomas Allison answers the question, "Are hot tubs safe ... and can using them be good for your health?" Dr. Allison is director of the Sports Cardiology Clinic and the Integrated Stress Testing Center at Mayo Clinic.

Myth or Matter-of-Fact: Hypertrophic cardiomyopathy affects far more men than it does women.

Listen to the program at 9:05 a.m. CT, Saturday, February 27.

Miss the show?  Here's the Mayo Clinic Radio podcast.

Follow #MayoClinicRadio and tweet your questions.

Mayo Clinic Radio is available on iHeartRadio.

Mayo Clinic Radio is a weekly one-hour radio program highlighting health and medical information from Mayo Clinic.

Access archived shows.

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Crystal M: My Mayo Clinic Story https://newsnetwork.mayoclinic.org/discussion/crystal-m-my-mayo-clinic-story/ https://newsnetwork.mayoclinic.org/discussion/crystal-m-my-mayo-clinic-story/#comments Thu, 27 May 2010 11:00:20 +0000 https://sharing.mayoclinic.org/?p=3606 Crystal M writes from North Carolina: I saw the invitation to share your story in the newsletter and thought that I would share mine with you. I am a Family Nurse Practitioner in hospitalist medicine, working in an approximate 150 bed facility in North Carolina. At the age of 23 I was diagnosed with Hypertrophic […]

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Crystal M writes from North Carolina:

I saw the invitation to share your story in the newsletter and thought that I would share mine with you. I am a Family Nurse Practitioner in hospitalist medicine, working in an approximate 150 bed facility in North Carolina. At the age of 23 I was diagnosed with Hypertrophic Cardiomyopathy, this was around three years after my father had been diagnosed with this genetic condition. I had no symptoms at the time, continuing to work as a cardiac ICU nurse and eventually graduate as a nurse practitioner.

Things began to change around late 2007 when I was 32 years old. I could no longer participate in much physical activity and over the next year things progressed to the point that I could no longer climb stairs and work was becoming increasingly difficult. It seemed that no one in my local area was comfortable treating my condition and several referrals were made with no treatment resulting in any measurable improvement.

I made the decision on my own to travel to Minnesota and it was by far the best decision I have ever made. When I arrived in the HCM clinic I finally began to understand what was happening to me and receive clear guidance. One week later I underwent surgery in St. Marys Hospital, which was a life-changing experience. Before this I was nearing the point of being unable to work, and eight weeks after surgery I returned to seeing patients full time.

I have been in healthcare for years and it is difficult for me to imagine that there is care out there anywhere that surpasses Mayo Clinic. My experience changed my life and I think about this every day in my interactions with others who are suffering. Thank you does not even begin to express my gratitude for what the clinic gave me- my life back.

If you would like to share your Mayo Clinic story, you may do so in the comments on this post, or see this page for more options.

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Hypertrophic Cardiomyopathy – Bernyce’s Story https://newsnetwork.mayoclinic.org/discussion/hypertrophic-cardiomyopathy-bernyces-story/ https://newsnetwork.mayoclinic.org/discussion/hypertrophic-cardiomyopathy-bernyces-story/#comments Thu, 19 Feb 2009 12:00:47 +0000 https://sharing.mayoclinic.org/?p=770 The Internet makes it possible for Mayo Clinic to gather its worldwide community of 500,000 annual patients and 50,000 employees through Sharing Mayo Clinic. Disease-oriented patient groups likewise have formed online, where patients share their stories and offer support. The Hypertrophic Cardiomyopathy Association is one such patient group, which has both online and in-person components, […]

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The Internet makes it possible for Mayo Clinic to gather its worldwide community of 500,000 annual patients and 50,000 employees through Sharing Mayo Clinic. Disease-oriented patient groups likewise have formed online, where patients share their stories and offer support.

The Hypertrophic Cardiomyopathy Association is one such patient group, which has both online and in-person components, including a community forum and an annual meeting to be held this year in late May in New Jersey. Several Mayo Clinic cardiologists and surgeons serve on the association's medical advisors group.

A patient named Bernyce recently shared her story on the HCMA Web site. Here's an excerpt:

August 27 2007 – I wrote to the cardiologist to let him know that I had been quite distressed over the weekend with the same complaints and that I had tried to reach him but he was not on call. His associate told me to double up on the Lanoxin but it did not help. I was so exhausted I could barely walk from the bathroom to the bedroom for lack of breath.

I went to the Mayo Clinic in Rochester, Minnesota. I was fortunate that my daughter accompanied me and she pushed me in a wheelchair on the trip all over the clinic to my several appointments, which included an echocardiogram that lasted for two hours and was done by two technicians and two medical doctors. There were several other tests as well.

August 29, 2007 -- I met with Dr.Ommen, one of the nicest and kindest doctors I have ever met. He reviewed the tests with me and finally told me that I needed surgery for my HCM, and for an aortic valve replacement and possibly a mitral valve replacement as well. He was not certain about the mitral valve because the echo left some things unclear. I returned home and called the Mayo Clinic to make an appointment for surgery with Dr. Joseph Dearani.

You can read the rest of Bernyce's five-year story on the HCMA site, where she also expresses gratitude for the existence of organizations like HCMA that provide resources for patients like her. Here is her conclusion:

I am 81 years old and feel reborn again.

I am eternally grateful to the HCMA for all the information they make available. I am eternally grateful that the HCMA helped me to find Dr’s Ommen and Dearani and for the time they spent with me on the phone before and after surgery. I'm eternally grateful that there are such places as the Mayo Clinic and I am proud that it is in the United States and I told that to many people that I've met there and others at home about my experience. The attitude of all of the people who work there is simply superb. I wish I could say that for all the clinics and hospitals I've been to and there have been many including the National Institute of Health where I was in a protocol for 15 years, unrelated to hypertrophic cardiomyopathy. At Mayo the attention and care of their nurses is something I have not seen anywhere else. The cleanliness and punctuality throughout the place was marvelous. I cannot speak highly enough about the Mayo Clinic.

Please excuse me for being so long-winded but I wanted to share my experience with you all. If you should want to put any of this on your website, you have my permission to do so.

The post Hypertrophic Cardiomyopathy – Bernyce’s Story appeared first on Mayo Clinic News Network.

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