My head pounded incessantly. With every sip of water, I felt like I was swallowing razor blades. I coughed and wheezed so hard that my stomach muscles ached. But as sick as I was, this would be one of my healthiest days, because a visit with a vigilant nurse practitioner at Mayo Clinic may have saved my life.
After feeling really crummy for several days last spring, lying in bed "drinking plenty of fluids," and hoping whatever was ailing me would pass, I decided that I had waited long enough. I visited Mayo Clinic Express Care at one of the Hy-Vee Grocery stores in Rochester, Minnesota. That's where Dawn Kaderabek, a Mayo Clinic nurse practitioner, diagnosed me with Influenza B. She also noticed something unusual.
While listening to my heart, she heard a whooshing sound and asked if I had ever been told about a murmur. I said no, I hadn't. She told me that murmurs are not always dangerous but recommended that I get this checked out sooner rather than later. So I went to see my family physician at Mayo Clinic, who examined me, confirmed the murmur, and sent me for an echocardiogram test to monitor how blood was moving through my heart.
I called my nurse practitioner, who has more than 30 years of nursing experience, to thank her for her for diligence and the tactful nudge to seek further medical attention. She said, "First, let me say I'm sorry to hear you have hypertrophic cardiomyopathy, but I'm so glad we found it and you can start treatment. It is a diagnosis that is often silent and can be deadly, so I'm really, really glad you followed up and are being treated."
"It is a diagnosis that is often silent and can be deadly, so I'm really, really glad you followed up and are being treated."
Shortly after my echocardiogram findings, I underwent a series of tests: an MRI of my heart, an electrocardiogram, blood work, chest X-Ray, and a treadmill test. I also wore a Holter monitor to study the electrical activity of my cardiovascular system. These tests were all used to confirm my diagnoses, as well as to pave a path for individualized treatment.
"Hypertrophic cardiomyopathy is an inherited condition where the heart muscle becomes too thick. Because the heart is thickened, it can become stiff and the heart walls can obstruct blood flow out of the heart. While these changes lead to symptoms such as chest pain or shortness of breath in some patients, unfortunately the first symptom can also be sudden cardiac death. Thankfully, with appropriate medical care, most patients with this condition have an excellent quality of life and normal life span.
"A bicuspid aortic valve is the most common inherited heart abnormality and is a separate diagnosis. The aortic valve separates the heart from the biggest artery in the body, the aorta. In most patients, this valve has three portions (tricuspid), but in 1 to 2 percent of patients, two of the cusps are fused, forming a valve that is bicuspid. Over time, bicuspid aortic valves become either sticky (stenotic) or leaky (regurgitant) and often require replacement."
Until this affected me directly, I didn't know much about either condition, but I recalled the tragic sudden death of college basketball star Hank Gathers in 1990. When I told my daughter Mantha, a pop culture and TV aficionado, about my diagnosis, she knew about the condition from the TV show, One Tree Hill, in which a basketball player was forced to end his career due to this condition.
"Conditions like hypertrophic cardiomyopathy account for at least 40 percent of all sudden deaths in young athletes."
Strenuous activity such as competitive sports can be dangerous for people with conditions like this. Dr. Geske explains: "Conditions like hypertrophic cardiomyopathy account for at least 40 percent of all sudden deaths in young athletes. Vigorous physical activities can worsen the obstruction of blood flow out of the heart or lead to electrical heart rhythm problems that can be deadly. Very heavy lifting can place stress on the aorta, which can be abnormal in patients with a bicuspid aortic valve. While it is important to stay active, certain types of activity can increase the risk of serious heart events. Because of your diagnoses, we are able to give recommendations that will help with symptoms and may prevent an unexpected, tragic heart event."
I feel fortunate that I never experienced any major incidents, such as passing out or cardiac arrest, despite a lifetime of intense exertion. Until April, my daily workout was based on interval training with 52-pound kettlebells, lifting bags of concrete, and running several miles. I'm 54 now, and just a few years ago completed 5K events, half-marathons and a marathon. In school, I ran cross-country, and it was not uncommon to ride my bike 100 miles a day. From now on, my exercise will be moderate walking and maybe jogging, some easy bike riding, and lifting light weights. The good news – my wonderful wife will no longer wonder about the strange grunting sounds coming from our basement during my workouts.
When I look back, I knew something wasn't right. I thought it was just age or stress. Some days I'd feel OK and could exercise with high intensity, but on others, I would become fatigued quickly during workouts and daily activity. On the bad days, I would fall asleep while sitting in a chair and become winded after walking only a short distance. Dr. Geske wasn't surprised to hear this. "Because conditions that affect how the heart beats are very dynamic in HCM, patients can often have substantial fluctuations in their symptoms," he told me. "More than once, I've been told how relieved someone was to have an answer, after being confused as to why some days they felt fine and others they could tell that something 'just wasn't right.'"
After all my tests, I have been told I am not at a significantly increased risk for sudden cardiac death if I follow the prescribed program of moderate exercise. I am now also on medicine to slow my heart beat down. It's working, but it's an adjustment, because I feel stuck in a lower gear. I still have the inconsistent symptoms -- one day I can walk six miles with no issues, but another, I can have trouble catching my breath and have to lie down after climbing only one flight of stairs.
In subsequent visits to my physician, I've been told my heart murmur has been barely audible. I've also been told that having the flu may have made the murmur more pronounced because I may have been dehydrated or my heart had to work harder because I was ill.
"Having the flu may have made the murmur more pronounced because I may have been dehydrated or my heart had to work harder because I was ill."
Looking ahead, my diagnoses go beyond me. Both hypertrophic cardiomyopathy and having a bicuspid aortic valve are genetic. My two daughters and my two sisters will need to be screened for the conditions. Furthermore, my family will need to be monitored every few years for the rest of their lives, because sometimes the condition shows up in later years, and a blood test for the genetic markers isn't perfect at finding the underlying gene.
One day, my defective aortic valve may need to be surgically replaced. And, while medicines are the mainstay of treatment in hypertrophic cardiomyopathy, it's also possible that in the future I could require a surgery during which a portion of my enlarged heart muscle is removed so that blood can exit the heart more freely. While surgery for a bicuspid aortic valve is fairly common, a surgery for hypertrophic cardiomyopathy requires a surgeon with extensive experience, and there are only a few places in the country that perform this special surgery. Thankfully, I work here at Mayo Clinic – one of the world leaders.
This journey has not been fun, but I consider myself incredibly lucky and ask, "What if I didn't make an impulsive decision to go to the express care clinic and run into a caring, vigilant nurse practitioner?" Without that decision, and Nurse Dawn's keen ear and insight, I may have never known I had this condition.
I'm also grateful to be employed at Mayo Clinic, a world center of excellence for treatment and research of cardiovascular disease, cardiac surgery, including my both of my conditions. As a member of the public affairs team, the most rewarding part of my job is sharing the amazing patient stories at Mayo. Today, my job means even more to me because now I have my own Mayo Clinic story to share.
Update: After this story was originally written, I had a subsequent consultation with Steve Ommen, M.D., director of the Hypertrophic Cardiomyopathy Clinic at Mayo Clinic. Given continued symptoms, I have decided to have surgery (a septal myectomy) later this year.
- Ron Petrovich, Communications Director, News and News Delivery,
Mayo Clinic Department of Public Affairs