Personal Perspective Marlin Colón
Moving forward with strength & support
Marlin Colón’s quality of life changed once she began having heart issues due to hypertrophic cardiomyopathy (HCM). Then it changed again – for the better – once she found the resources that helped her learn how to manage this lifelong condition.
Heart issues began for me when I was 13 years old. For two years, doctors attributed them to the fact that I was growing. At 15, they finally determined I had supraventricular tachycardia (SV T), which is basically a group of arrhythmias or irregular heartbeats. I had an ablation, and that solved the issue for many years.
At 23, I gave birth to our first child, and I could feel something was wrong in my chest. An echocardiogram showed that my heart was enlarged because of a condition called hypertrophic cardiomyopathy (HCM). I saw a specialist and was put on a beta blocker. I followed up annually and felt so good that, against medical advice, I got pregnant again. My heart condition made it a high-risk pregnancy, but our daughter was born healthy.
When we moved to Florida, I saw a new cardiologist. Unfortunately, it was never a good relationship. With every visit, I felt more lost. I could tell my condition was deteriorating and I tried to advocate for myself by asking whether a change of diet or something else might help, but I didn’t get any answers. Although it wasn’t the smartest decision, I stopped my follow-up visits for a year or two.
Finally, I felt so bad that I went back to him. Extreme fatigue made me stop working in the middle of the day just to take a nap. I’d wake up during the night sweating, with a racing heart. He ordered an echo. On my way out, he told me that if he saw anything that required attention, the office would let me know so I could be seen faster.
I went home and burst into tears as I told my husband about the visit. I told him that I thought I was dying. He suggested we go back to the specialist in Boston. Because we had the kids to think about, I hesitated. I prayed and meditated, then it dawned on me to look on Facebook for any groups focused on my condition. That is where I found the Hypertrophic Cardiomyopathy Association (HCMA). I’m convinced it saved my life.
So many doors suddenly opened for me that day. With their support, I was able to:
- Get educated. I learned so much during my first call with Lisa, the CEO. She asked questions and provided trusted resources. I realized how much I didn’t know about my own condition.
- Find a local specialist. The same day, I was connected with an HCM specialist in my city. I didn’t realize there was one so close that I could have been seeing all along.
- Begin a personalized treatment plan. The specialist saw me the very next day. He determined I needed an internal cardioverter defibrillator (ICD) placed immediately, followed by open heart surgery to perform a septal myectomy to alleviate my symptoms. The surgery was successful. I found out later that he removed twice as much heart muscle as he typically does! I still take a beta blocker and may for the rest of my life.
- Surround myself with support. My husband, mom and sister were immensely helpful, but heart surgery is a scary concept. HCMA introduced me to people who’d had the same procedure. It was comforting to learn how they felt before and after the surgery. I also had the support of my mom's husband, my dad, extended family and close friends. My Facebook community was praying for me and supporting me through a GoFundMe page.
- Get my family members tested. Imaging tests showed that the lower part of my mom’s heart is affected, so she is being monitored. The kids show no signs of HCM, but they will continue to see a pediatric cardiologist because things can change as they get older. My genetic test was inconclusive, so the kids will have genetic testing as often as insurance allows.
- Share my story to help others. The day I gave this interview was my one-year “heartaversary” – the day I had open heart surgery – and it reaffirmed for me that sharing my story as a patient advocate is all part of God’s plan for me.
- Live longer and better! I don’t think the cardiologist I saw was experienced enough with HCM because he didn’t see the urgency the specialist did. Had I not been connected with the new specialist, I may not be here today. I get very emotional when I think about the time I lost with my children by not having the right treatment and medical care. Kids take energy, and I didn’t have it. At one point, my daughter asked me if I knew how to run because she’d never seen me do it. That was heartbreaking. But every day, things are looking up.
Even though recovery from open heart surgery takes a long time, I am so much better than I was before. Do I still get tachycardia? Yes. Am I still fatigued? Yes. But I don’t wake up sweating with a racing heart anymore, and I can play basketball with my kids. And, yes, I can even run.
