“She’ll never live.”
These were the first words a new mother heard from the attending nurse when her child was born. The baby was blue, weighed less than four pounds, and had some type of serious heart “problem.” That child was me.
As a child, I never really understood exactly what condition I had or what its severity was. My pediatrician only noted that I had a heart “murmur;” my heart sounded like galloping horses. In hindsight, I can appreciate that in the late 1950s, medical science and diagnostic tools weren’t where they are today, making an accurate and complete diagnosis difficult. I only knew that I got tired easily during gym class, couldn’t run as fast as everyone else could, and had trouble keeping off weight. I was bullied in school because of my lack of sports ability. Fortunately, I excelled in academics.
I felt very alone and isolated with my disease. My parents and I had no understanding of the severity of my condition. I only knew that I felt different from everyone else.
Not knowing the nature of my condition and any limitations it posed, I was determined from an early age to attend the Naval Academy as a way of honoring my dad, an Academy graduate who perished in the service when I was 6 months old. I was thrilled when I was in the first group of women selected to attend the Academy, pending medical clearance. I had already met the academic requirements, passed the physical fitness test, and had been assigned a roommate, so I did not foresee any problems.
It was when I had to undergo the comprehensive medical exam that my complete congenital heart issues were made clear. I had Ebstein’s Anomaly, a rare congenital defect. In Ebstein’s, the tricuspid valve does not form properly and causes regurgitation. I was denied admittance to the Academy because my heart posed too much of a risk. I was devastated.
This was the first time I had experienced any major limitations or discrimination based on my heart disease. I was angry and vowed I would do my best to stay as fit and healthy as possible.
From then on, I was monitored by a congenital cardiologist at Massachusetts General Hospital. I required no surgery, no medication—his only advice was to rest when I got tired and come for an annual cardiac checkup. When I later married, he advised my husband and me that we should consider adoption if we desired children, as childbirth would be too much of health risk. We chose adoption, and eventually adopted two children.
Once I moved away from Boston and started raising a family, I found it difficult to make my annual trek to Mass General. I started seeing a local cardiologist near our upstate New York home. Several years ago, he recommended that I make an appointment with a specialist treating adults with congenital heart disease, who just happened to be at Mass General. I met my new adult congenital cardiologist, and she advised me that I would likely need surgery down the road. I hoped the road was long.
The stressors of daily life got in the way, and I started gaining weight and not exercising. My ill parents had moved in with us on two separate occasions, and between taking care of them, dealing with two teenagers, and holding down a full-time job, I put my self-care last. Each time after my parents returned home to Boston, I ended up in the ER, once with a severe nosebleed and then with chest pains. Putting the health of others before mine obviously did not work.
At my congenital cardiologist’s request, in June of 2012, I met with a congenital cardiac surgeon. I remember it well because it was exactly two weeks after my mom passed away. This was more of a preliminary meeting to discuss what my options might be. I realized then that I needed to take better care of myself to be in the best shape possible for surgery.
When I met with my congenital cardiologist in November 2014, she noted it was time, and I knew she didn’t mean for lunch. I had a follow-up meeting with the surgeon in February 2015, during one of Boston’s snowiest winters! We decided on May 2015 for the surgery, and the surgeon set the date of May 21. I figured I would be home in time for the Memorial Day weekend and could spend my summer recuperating and walking my furry friend, Kovu.
My surgeon outlined his plan—he would replace the tricuspid valve with a porcine valve, close a hole in my heart, and perform a modified Glenn shunt procedure. This would be my first open heart surgery, and at age 57, I was quite nervous. My continuing goal was to be in the best shape possible, so I used the lead time I had to eat more healthfully, exercise regularly, and practice meditation.
My surgery went as planned, but recovery was much longer and arduous than I expected. I spent two weeks in the hospital and another three weeks in a rehabilitation hospital close to our home in Schenectady, NY. That ambulance ride from Boston to Schenectady seemed to take forever! Several medical issues—including fluid in the lungs and a horrific nosebleed—kept me at rehab longer than expected. I was not discharged until just before the July 4th weekend
Even when I made it home, I required oxygen and a walker for several months. To boost my spirits during this process, my husband and I celebrated every small milestone—the first time I walked around the house, the first time I took a shower. When I thought my recovery was going too slowly, I just reflected on how far I had come.
The best thing I ever did was participate in cardiac rehab. It gave me the strength and confidence I needed to resume exercising. Eventually, I was able to get back to the YMCA and resume swimming, one of my favorite exercises. I will also never forget the first beautiful day in the fall I finally felt strong enough to take Kovu out for a walk.
Setting a goal helped motivate me during the recovery process. I wanted to walk a 5K within a year of surgery, and sure enough, less than a year from surgery on May 9, 2016, I accomplished this goal. I was dead last, but I did it! I have since participated in two more 5Ks. I have continued to set exercise and fitness goals.
Living with CHD has shown me the importance and value of giving back. Both before and after my diagnosis, I felt so alone—I did not know anyone with a CHD much less Ebstein’s. I remember a conversation with a colleague at work many years ago. We were talking about our plans for the upcoming long weekend, and she asked me what I was doing. I mentioned that I was headed up to Boston to see my cardiologist (I worked in New Jersey at the time). She casually asked me why, and I told her I had a rare congenital heart disease called Ebstein’s Anomaly. She started to cry, and through her tears said that her baby daughter was just diagnosed with Ebstein’s and that doctors did not hold out much hope. I decided then that I would someday give back to those with CHD. Now, I am honored to volunteer with the Adult Congenital Heart Association and WomenHeart. And my colleague’s daughter? She is now grown, married, and with a family of her own.
I have also learned not to compare myself to anyone else, CHD’er or not. Physically, I strive to be the best at my ability and take pride in any accomplishment. I make the stretch, but realistic, goals.
Living with CHD has also taught me to embrace life, cherish my family and friends, and find humor even when I least expect it. I try to take it one day at a time, and not worry about things that I cannot control. I recognize that while I cannot control what may happen, I can control how I react. I no longer sweat the small stuff. My faith has been a source of hope and encouragement. I will continue striving to live life to the fullest. CHD may throw me some curve balls, but I will either catch them or duck! As I say to my husband, I eventually want to wear out, not rust out.