Glenda Sexauer, 59, was diagnosed with heart failure when she was 46. But it took nearly a year—all while her heart health was steadily declining—for doctors to realize what was wrong.
She had several symptoms, including relentless fatigue, bloating, nausea, and weight gain she couldn’t explain. Initially, she was diagnosed with an autoimmune condition and pneumonia before her doctor referred her to a cardiologist. She was hospitalized for several weeks and had a pacemaker and defibrillator placed in her chest. Her road to recovery took several years—she still takes multiple medications each day and relies on her pacemaker—but she credits her active lifestyle for getting her through it all.
Heart failure affects about 3.6 million women in the United States—but there is a huge disparity in research between men and women with heart failure. Nearly 50% of people admitted to the hospital with heart failure are women,1 yet only 25% of women are involved in heart failure studies.2
After her experience, Sexauer became a community educator with WomenHeart, a nonprofit organization that educates women with heart disease about the signs of heart failure. Here’s her story, as told to writer Erica Sweeney.
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I’ve always been active. I exercised regularly, ran marathons, and once did a 2-day, 150-mile bike ride. But, when I was 46, I noticed that I wasn’t feeling like myself anymore. I had gained some weight and was tired all the time. I slept a lot and felt bloated. I just knew something wasn’t right. I went to my gynecologist first, thinking my symptoms could be pointing to menopause, but my hormone testing ruled that out. Then I researched my symptoms online and thought it might be my thyroid acting up. My doctor diagnosed me with the autoimmune disease Hashimoto’s thyroiditis, an autoimmune condition that can cause symptoms like fatigue, weight gain, and muscle weakness. I thought, “OK, that’s what it is.”
I continued feeling tired all the time, though, despite taking medication for Hashimoto’s. I had a lot going on in my life then too. My son had just gone away to college and my mother-in-law was living with us. I was working as a vice president of a financial services company. My mom was also really sick; she had Alzheimer’s and was nearing the final phase of her life. So I thought maybe I was just experiencing anxiety.
Then I started feeling a funny sensation in my chest when lying down. It was kind of like I could hear my heart gurgle. A couple of nights I had to sit up to sleep. After my mother passed away, something else gave me pause. I was at her funeral when I coughed up some stuff that didn’t look right. I saw my primary care doctor and told him I thought I had pneumonia. He confirmed I had a little bit of fluid in my lungs and prescribed medication. I never had a fever, which, looking back now, was a big hint that I didn’t have pneumonia. No one ever thought I had heart disease.
Then, I finally got a heart failure diagnosis.
To celebrate our 25th wedding anniversary, my husband and I planned a trip to Hawaii. We decided to go, even though I wasn’t feeling great. I couldn’t eat much and felt nauseated. When we got there, I slept so much. I had to sit and rest after walking up just two steps. We had all these activities planned and had to keep canceling because I just couldn’t do them—and that’s not like me. On the day we came home, I put all of my symptoms into a health checker online and it suggested I had a heart problem. At the time, we laughed because I was really pretty healthy.
I decided to see my doctor again to run through all of my symptoms one more time. They asked if I’d ever had an electrocardiogram (EKG), which records the heart’s electrical signals to check for potential issues. I hadn’t, so I was sent to a cardiologist. That’s when I learned I had heart failure—and I was floored. I remember calling my sister and crying.
They put me in the hospital, started me on medication, and ended up taking out 30 pounds of fluid, which had built up in my body because my heart wasn’t functioning properly. The day I was supposed to be released, I went into cardiac arrest. I had to stay in the hospital for another couple of weeks in a medically induced coma.
I have cardiomyopathy, a disease that affects my heart’s ability to pump blood to the rest of my body. It’s pretty much idiopathic, meaning there’s really no known cause or reason for my condition. I ended up getting a combo implantable cardioverter defibrillator (ICD) that’s a pacemaker and a defibrillator. It monitors my heart rate 24/7 and delivers an electric shock to restore it if it’s beating too slow or with an abnormal rhythm.
When I got out of the hospital, my ejection fraction—the percentage of blood in the heart that’s pumped out with each heartbeat—was measured at just 12%. It’s slowly gone up, and in the last few years, it has made it to at least 40%, so I’m closer to the normal 50% to 70% range.
It’s taken years to feel like myself again.
Once I got out of the hospital, I had a lot of doctor appointments. It took a while to get my medication doses at the right level because I don’t always tolerate certain drugs well.
I was unable to work for about three months. I remember getting out of my car when I went back to the office and having to stop to rest while walking from my car to the front door. I would get very lightheaded. I was exhausted when I got home and would go to bed really early. It took years to feel like myself again.
I still have an ICD, and I take seven different medications regularly. When I got a second lead (the electrical wire that runs through the veins to connect the device to the heart) added to the device, my heart got punctured. I had pericardial effusion, which is a build-up of fluid around the heart, and had to have open-heart surgery.
Overall, I know I’m lucky because I’m pretty active. I’ve recovered a lot better than many of my doctors expected. I can now do a boot-camp-style workout four days a week. I hike one day a week and also do yoga consistently. I’m retired now and babysit my 15-month-old twin grandbabies two days a week. I know many people aren’t able to be so active after heart failure, so I’m very grateful for that.
Now, I enjoy sharing my story to help other people.
My diagnosis was certainly delayed. I don’t think I gave my doctors the full picture at the time; I would pick out symptoms that I was concerned about, rather than discuss the full scope of all of them. But they didn’t ask a lot of questions either. We were always focusing on a specific symptom. I was very busy with my family and a full-time job, and I just wanted to find a fix. Unfortunately, it took almost dying to get diagnosed with heart failure.
One thing I really feel strongly about is that doctors don’t talk to women about heart disease as much as they should. I don’t think they go into enough detail about how heart disease is the number one killer of women in the US, and that it can happen to women at any age. Our heart-related symptoms can look a lot different too.
Talking to other women and encouraging and educating them has been very rewarding because I feel like I’m helping and making a difference. I can use what I’ve learned and what’s happened to me to help someone else—maybe even save their life.
Sources:
- Circulation, Contemporary Rates of Hospitalization for Heart Failure in Young and Middle-Aged Adults in a Diverse US State
- Methodist DeBakey Cardiovascular Journal, Heart Failure in Women
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