Deborah Flaherty-Kizer is CardioSmart
Deborah Flaherty-Kizer was born with a heart defect. Instead of allowing her condition to limit her, she regularly challenges herself physically and serves as a mentor to other heart patients.
Deborah Flaherty-Kizer was among the first group of women selected to attend the U.S. Naval Academy but was denied admittance after it was discovered that she had Ebstein's Anomaly, a rare congenital defect.
Exercise, including beginner's boxing, is an integral part of Deborah's life. She swims or walks daily and also participates in indoor triathlons.
As a volunteer with the WomenHeart organization, Deborah serves as a mentor for women who are living with or at risk of heart disease.
I am determined not to let my heart disease limit me; rather, I use it to spur me to new challenges and opportunities.
Deborah Flaherty-Kizer: Congenital Heart Patient
What is your CardioSmart story?
“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 4 pounds and had some type of serious heart “problem.” That child was me. As a child, I never understood exactly what condition I had or its severity. My pediatrician only noted that I had a heart “murmur,” my heart sounding 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 and had trouble keeping off weight. Sports were not a part of my world growing up. But that was fine by me—I focused on brains, not brawn—an area in which I excelled.
Not knowing the severity of my condition and any limitations it posed, I was determined to attend the United States Naval Academy. My biological dad was a U.S. Naval Academy graduate and was killed serving his country when I was 6 months old. It was my long-standing goal to honor his memory by attending the Academy and becoming a career officer. I remember asking my mother as a child why girls couldn't attend the Academy. After all, I knew I had the intelligence and determination. Finally, I thought my wish would become reality—I was in the first group of women selected to attend the Academy, pending medical clearance.
I had already met the academic requirements and passed the physical fitness test, so I expected no problems. In fact, I already had a roommate! When I had to undergo a comprehensive medical exam my complete congenital heart issues were made clear. I had Ebstein’s Anomaly, a rare congenital defect. I was denied admittance to the Academy. 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. Once diagnosed, I was monitored by a cardiologist at Massachusetts General Hospital in Boston. I required no surgery, no medication—his only advice was to rest when I got tired, see him annually and consider adoption should I wish to have children since pregnancy would be risky.
I always felt somewhat alone with my disease, having a condition that many doctors didn't even know about. I would go for checkups and more often than not, interns would come in to listen to my heart. One day at work, I was discussing weekend plans with a colleague. I mentioned that I was going to Boston for my annual cardiologist visit. She inquired why I was traveling so far (I worked in New Jersey at the time) and I informed her that I had a rather rare condition called Ebstein's Anomaly. She broke down in tears. Through her tears, my colleague told me that her baby daughter was just diagnosed with Ebstein’s Anomaly! She had been told that most children born with Ebstein's do not make it to adulthood. She said knowing that I have this condition gave her hope. Seeing her pain turn to joy planted in me the desire to one day work with women and children with heart disease.
Once I moved away from Boston, married and started raising our adopted children, I found it difficult to make my annual trek to Mass General. I started seeing a local cardiologist. 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 Massachusetts General Hospital, Ami Bhatt, MD, FACC. My local cardiologist and Dr. Bhatt indicated that I am in pretty good shape for a woman with my condition. We also discovered that I have a thyroid condition and sleep apnea, which made maintaining weight loss difficult.
I am determined not to let my heart disease limit me; rather, I use it to spur me to new challenges and opportunities. Through my volunteering with WomenHeart I am able to impart this message to other women.
First, I make exercise an integral part of my life. I now exercise by swimming and/or walking daily. I also participate in indoor triathlons and take beginning boxing! I make it a point to schedule exercise time as I would any other appointment. I tell women it is not a luxury to take care of yourself first before taking care of others—it is a necessity. We cannot help others in our family if we are not healthy.
I try to be creative in finding exercise time. At one point, I was transporting my dad back and forth to the hospital for three-hour hyperbaric oxygen treatments. I discovered I could make it to the Y for my swim while he was being treated. I have set two goals for myself—to walk in a half marathon next October and to reduce my reliance on medication.
Second, I have also found that giving back to women who are living with or at risk of heart disease is a privilege. My volunteer work with WomenHeart allows me to connect with heart sisters all across the country. I no longer feel alone.
Third, I am taking control of my health. Sometimes you need to make a change to improve the level of care. For example, I had been seeing the same primary care doctor for 15 years but never felt completely comfortable with him, often feeling that my concerns were being ignored. I started seeing another doctor in the practice and we have established a wonderful relationship. I have finally taken ownership of the things I need to change to improve my health and have a plan to address them. I try to stay positive and learn from setbacks. As I tell my husband, I want to wear out, not rust out!
What does it mean to you to be CardioSmart?
Being CardioSmart means taking the steps I need to lead a healthy lifestyle. I realize it is important for everyone to do so, but for me I feel the stakes are higher. Of course, no one is perfect, but I try to eat healthy, exercise and manage stress the best I can. I also find that I need to maintain a positive attitude, looking at what I can do, not what I can't. Being CardioSmart also means finding doctors I feel can work best on my "team"— I have come to appreciate that I am not a "run of the mill" patient and need to find doctors who are willing to treat the whole patient.
As a congenital heart defect patient, what motivated you to keep going day in and day out when things were tough?
I guess I never realized the severity of my defect until I was older. As a child, it never really bothered me too much that I wasn't an "athlete"—I was more focused on academics, which I excelled at, than sports. It was when I was denied admission to the Naval Academy because of my condition and started seeing a specialist on congenital issues that I realized I had a serious condition. I was blessed not to have any major symptoms, although I was advised by my cardiologist to adopt children, as the birthing process would be risky.
My volunteer work also motivates me to keep going and make good choices related to my health—after all, I have to "walk the talk." I hope my story can motivate others to stay positive, be CardioSmart, learn from mistakes and not be hard on themselves. In my talk, I tell the story of how Dr. Bhatt wanted me to lose 50 pounds over the year. Well, it was a horrendous year—my mom and dad moved in with us when my mom was diagnosed with dementia and lung cancer and my daughter's best friend passed away from leukemia. Needless to say, I did not put myself first and lost a grand total of 7 lbs. But, as I told Dr. Bhatt, given what I have been through I am glad I didn't gain 50!
The desire to remain healthy and be around for my children (and eventually grandchildren!) has motivated me to keep going.
Have you maintained a relationship with your cardiologist?
I have two cardiologists, a local one, Douglas Long, MD, FACC,* of Schenectady Cardiology Associates in Schenectady, N.Y., and Ami Bhatt, MD, the co-Director of Massachusetts General Hospital’s Adult Congenital Heart Disease Program in Boston.
I do have a rather funny story to share. When I was diagnosed with Ebstein's as a teen, it was suggested that I see Richard Liberthson, MD, a pediatric cardiologist at Mass General. I did see him annually for many, many years, but after I moved to New Jersey, married and had children, I was only followed by Dr. Long. About eight years ago, Dr. Long suggested I see a specialist dealing with adult congenital issues at Mass General. It turns out to be a small world—I ended up being seen by Dr. Bhatt, who was taking over from Dr. Liberthson as he prepared to retire! Dr. Liberthson happened to be in the office the day I was there, and it was great to see him!
I am thrilled how Dr. Bhatt and Dr. Long work together to manage my cardiac care. Of course, thanks to technology, test results can be shared immediately. I also have a great relationship with Dr. Bhatt—she nudges me when I need to be nudged and listens to me when I have concerns/questions. In fact, she wrote a recommendation for me to the WomenHeart Science and Leadership Institute and recommended me as a "featured patient" on the Mass General website.
Who is your support system?
I am fortunate to have a four-part support system. First is my family, which has supported me in all my exercise endeavors—they have cheered me on in my indoor triathlons and 5K races. Second is my good friend Pam, who is my partner in Weight Watchers. We support each other at weekly meetings and share healthy recipes. Third are the trainers at the YMCA. They encourage me to challenge myself and set goals. I may not come in first, but I always finish! Finally, my WomenHeart sisters and the women I meet as a volunteer provide support and encouragement.
Tell me about the volunteer work that you do. What does it involve?
I am honored to be a WomenHeart Champion! WomenHeart is the National Coalition for Women with Heart Disease. I was looking through a health magazine and saw a notice looking for women to apply to the WomenHeart Science and Leadership Symposium to be held at the Mayo Clinic in Rochester. I applied and was delighted to be accepted. It was an amazing program geared toward preparing women to be spokeswomen for women's heart health.
As a WomenHeart Champion, I have given speeches telling my story and informing women about heart issues at conferences, nursing groups, women's groups, etc. I have also "manned" information booths at health fairs.
As I "wind down" my work hours and gear into retirement mode, I am hoping to expand my volunteer activities to work with the Adult Congenital Heart Association.
What motivates you to take on exercise challenges like a half-marathon or indoor triathlon?
What motivates me is being able to accomplish something I never thought achievable and hopefully inspire someone else to do the same. I also want to set a good example for my young adult children that at any age you can scale new mountains and continue to grow! I'm most competitive with myself, so I don't care if I come in last (I often do!) but at least I finish. I try to pick challenges that are a "stretch" but are doable.
*Editor’s note: Since completion of this interview, Dr. Douglas Long passed away. Deborah has begun seeing a new cardiologist in the same practice, Christopher T. Dibble, MD, MS, who will follow in Dr. Long’s footsteps of maintaining a collaborative relationship with all of Deborah’s cardiac specialists.