Eye of the Tiger – Rising up to the challenge of cardiomyopathy and heart transplantation

By Denise Taddeo, Portland, ME

Denise with her son Darin

Having a stroke at age 34, just 9 months after giving birth to my son, was shocking to say the least. Even more inconceivable, I was also diagnosed with dilated cardiomyopathy – an enlargement of the left ventricle that makes pumping blood more difficult. I ate healthily, never smoked, and exercised regularly. So how did this happen?

A transesophageal echocardiogram revealed a small hole between my atria, a birth defect called a patent foramen ovale, which may have allowed a clot to pass through my heart to my brain. The cause was deemed unknown at that time, but we later learned that it was a genetic condition. I had the hole closed, and started taking baby aspirin and a beta blocker.

The next five years, I led a highly active life, not letting my diagnosis stop me. I did triathlons and endurance bike rides. Maybe I challenged myself to fight back against my diagnosis, maybe just to do big things while I could.

And then I had a heart attack. I was running and started having a sharp pain in my left lower shoulder blade. I walked home and lay down. I felt nauseous for a little while but then felt better. So, I showered and went to work. That evening, I started to question what happened. The next morning, I called my cardiologist and was told to get some bloodwork. A few hours later, I got a call to come to the emergency room. Another clot had caused a heart attack. I was devastated, as I had been feeling strong and healthy. At this point, they decided I needed a blood thinner.

Another quiet nine years followed, although I had to get an Implantable Cardioverter-Defibrillator (ICD) as a safeguard, to protect against potentially fatal arrhythmias. I continued to slowly decline, having to pace and limit my exercise efforts, but I remained as active as possible.

In January of 2021, I had a stroke – a more serious one this time – despite taking a blood thinner. Terrified, I was paralyzed on my right side and could not speak. Fortunately, my 15-year-old son heard my moans from another room, immediately recognized what was happening and called 911. His actions allowed me to get to the hospital within the time window to undergo a thrombectomy to break up the clot.

Denise at the Maine Heart Walk

To my amazement and relief, I recovered quickly. I am so incredibly grateful that Maine Medical Center was able to perform this procedure and that my son was home and knew what to do. Otherwise, my life would have been much different.

The cardiologists urged me to reach out to heart transplant centers in Boston once I was back on my feet to get established with them just in case. By mid-summer, I was feeling good and vowed to reach out in the fall. My heart had other ideas. In October of 2021, my ICD fired. A week later I could barely walk. I was dizzy and weak. I was admitted to Maine Medical Center and after trying a few things, I was transferred to Massachusetts General Hospital to see if an ablation – a procedure which helps restore the heart’s regular rhythm – could help. The ablation was unsuccessful. I suffered more ventricular tachycardia events in the days that followed, and in December of 2021, I was placed on the heart transplant list.

This occurred in the midst of the COVID pandemic. I was alone, shocked and scared, but quickly realized that this was the course I needed to follow. It was my chance for a life, and I embraced it. I had to be positive and optimistic– I could see no value in worrying. I placed my trust in the amazing people on the heart transplant team and focused on keeping busy listening to podcasts, watching way too much HGTV, playing solitaire, napping, and going for short walks. I meditated. My mantra that I said to myself repeatedly as I awaited my new heart: I am strong. I can do this. I am loved. I thanked my heart for her years of hard work and told her to hang on a bit longer, retirement was coming soon.

I was fortunate to be matched with a heart in 17 days! I got the news on Christmas day, a true Christmas miracle! I have never been so relieved. Everything went well with the operation, and I was able to go home 10 days later. That was over two years ago now and I am doing well overall. Transplantation is not easy, and I have faced some unexpected challenges. But, I am so grateful and humbled to be alive. I have an incredible village of friends, family and medical professionals that have helped me so much. The love and support I have received from people I know well and people I hardly know has been overwhelming. I am eternally grateful for my donor. Life is good.

This has been a journey of self-discovery. I have learned too much to share here but do not assume you are too young or too fit to have a heart problem. There are all sorts of reasons people have heart issues, particularly for women. I am also committed to self-care. I firmly believe that I have made it this far by having a positive mental attitude, staying active and eating well. My advice? Be your own advocate, ask tough questions, pursue answers and find your village of medical practitioners and healers.