Amy DiStefano’s Story: Running after a life-altering diagnosis

Shortly after giving birth to my fourth child, at the age of almost forty-one, I began a downward-spiral with my health that could have ended tragically. I was a middle school special education teacher with four young children and was the sole breadwinner of the family. I had a lot of pressure on me. During that time, I started exhibiting symptoms that I thought at the time had more to do with my “life situation” at the time, rather than with my actual health. I couldn’t have been more wrong. During the next year and a half, I was fatigued on a daily basis. I often wondered if I would get through the day. I had waves of nausea all the time.  I would sit at my desk at school and feel like I had a weight sitting on my chest. At night, when I lay down to sleep, I felt the same “chest-crushing” sensations. I would often use the bathroom overnight in excess of ten times.  Looking back, I attributed much of what I was experiencing to stress.

 

One night, in October 2012, I woke up in the middle of the night with my heart beating so fast it literally felt like it was pounding out of my chest. I went to the emergency room, where I was diagnosed tachycardic.  The doctors ran blood tests, and didn’t see any elevated levels consistent with a heart attack. However, my EKG was abnormal. They made me wait in the hospital until heart rate returned to normal. The doctors mentioned stress and possibly thyroid problems, and encouraged me to follow-up with my primary care doctor.

It took me two months to make that appointment. I only did so because I was exhausted and tired of feeling so terrible. My primary care doctor sent me to a cardiologist, Dr. Anthony Kawa.  Dr. Kawa did an initial exam and set me up for a test called a “stress echo”. I went to the hospital and took the test.  Little did I know at the time that the moment I stepped off of that treadmill, hospital staff had placed a call to Dr. Kawa. While I was driving home, my husband at the time called me and said that Dr. Kawa’s office called and said they wanted to make sure that I would be at my follow up appointment in the morning. 

The next day, I went to my appointment, alone, not knowing the diagnosis that I was about to receive. Dr. Kawa informed me that I was in “congestive heart failure,” and that my left ventricle was not functioning properly. He said my “ejection fraction” was less than thirty percent, and that I was at great risk for a sudden cardiac event. They couldn’t be certain what factor caused my heart to fail, but the evidence pointed to “dilated cardiomyopathy,” a result of my pregnancy.   Dr. Kawa told me that I needed to stop breast feeding my baby, and that I needed to start taking Coreg and Lisinopril immediately that day. They also scheduled me to have a heart catheterization the following day to assess the damage. I was shocked. I was very upset, especially about having to stop nursing. I was also stressed because there were so many people counting on me—my family, my children, and my students, to name a few. What would happen to them if I didn’t get better?

I was informed that this condition could not be reversed.  The first line of defense would be to try to find a combination of medication and dosages that would allow my heart to function more easily. If that did not work, they also might have to implant a Left Ventricular Assist Device (LVAD) or, in the worst scenario, a heart transplant.

Over the next year, my medication was increased repeatedly, and I had echocardiograms to check my heart function. I finally made it to 42% ejection fraction, and I was starting to feel so much better.

I gained thirty pounds over the next two years or so while on the medications. Dr. Kawa was concerned that, although my BMI was still acceptable, all this added weight was very hard on my heart. He challenged me to try to lose ten pounds.

I started walking for exercise. Then, I started run/walking. I even signed up for a 5k event. Slowly, the weight came off. When I saw Dr. Kawa six months later, I had lost twenty pounds. I kept going, and have lost the 30 pounds I had gained.

I also divorced and re-married during this time. My current husband is also my best friend…and my coach.  We have traveled on this journey together. We love to bike, swim and run and compete in triathlons and running events.

Thanks to my weight loss and exercise program, over the past year and a half, my medication has been cut down to a quarter of what it was at its highest. My heart function is over 50%, and I feel the best I have felt in my entire life.  I will need to take medications for the rest of my life, but, it will be worth it.

I am grateful to God, my family, and my husband, Jeff, for all their love and support.

Every time I work out, when it gets hard, I never forget that I “GET“ to do this. I am so lucky. Every run, every swim, and every ride is a gift.

Why are you choosing Thumb Coast Ultra & Relay?

My husband and I are preparing for the 2024 Bayshore Marathon, and are early on the Hanson’s
Running Marathon Method training program. We’re always looking for unique events and/or unique
locations to include in our training program. We love the Thumb area, and the event fits in well with our
training. We are doing the 50-mile relay event. For April, we want to continue with our training
program as we head into early May—with the Cincinnati Flying Pig Half-Marathon—and the Bayshore
Marathon on Memorial Day weekend.

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