Patient Stories

Added to My Toolbox
Removed from My Toolbox
Added to My Toolbox
Removed from My Toolbox

Rudy Wilson Galdonik is CardioSmart

Born with an atrial septal defect, Rudy Wilson Galdonik learned early on that while she couldn't control her physical limitations, she could control how she approached her heart condition. 

Rudy Wilson Galdonik had her first open-heart surgery in her mid-20s. She had a second open-heart surgery before the age of 50. Today, she travels and speaks nationally on the topic of living well with heart disease.

I continually strive to seek my own personal best, all within my own cardiac limitations.

Rudy Wilson Galdonik: Congenital Heart Defect patient

A hole between the top two chambers of my heart was detected when I went for my kindergarten exam. It was in the 1950s, when doctors at the University of Minnesota were using a milk pump from a dairy farm and beer hose from a brewery to hook desperately ill children up to their parents. The parent’s lungs were the child’s only source of oxygen. Surgery using cross-circulation was limited to 5 minutes. Because surgical correction was so risky, doctors advised my parents, “Just don’t let her do anything.” Because of my limited cardiac output, I was never allowed to run, take gym or play any sports. So, I devised all sorts of creative ways to fit in with my peers: fake kicking the ball to avoid running the bases, bicycling convoluted routes to avoid any elevation gain, etc.

In the seventh grade, I knew I was an inevitable candidate for taunts. “Ooh, you forgot your gym uniform!” quickly evolved into, “Hey, how come you never have a uniform?” I stood at a crossroads as the interrogations increased. So I dealt with the judgment and rejection of my peers in the only way I knew how. “You know your heart?” I asked. “Yeah.” “It goes thump-thump, right?” “Ahhh, yeah.” “Well my heart has a hole in it so it goes thump-psssh, thump-psssh.” For added effect, I stepped into the face of my interrogators. “If I take gym, I could go like that!” I said snapping my fingers. Walking death. There was nothing cooler in the mind of a seventh-grader than walking death. With a single snap of the fingers, I went from sick dork to way cool.

What I learned that day was that while I couldn’t control the physical limitations I had been born with, I could control how I looked at my circumstance. It became clear that humor would be a powerful asset. When I turned 24, I began to experience pounding and skipped beats for the first time. So I found a rock. My plan was to stroke the rock and calm my heart into submission. My plan didn’t work. As my heartbeats worsened, an article in Good Housekeeping detailed a story of identical twin girls who were born with identical holes in their hearts. The article described how open-heart surgery fixed their hearts. The twin’s story was my story.

I made an appointment with a local doctor but without ever putting a stethoscope to my chest, he suggested that I was lonely and that I should get pregnant to have something to occupy my time! My new husband and I had recently moved and fortunately, we weren’t planning on starting a family at that stage in our marriage. Months later, my new doctor advised me, that had I become pregnant, both I and a baby would have died. The day before I turned 26, I had my first open-heart surgery. My atrial septal defect was patched using part of the pericardium sac and a tear in my mitral valve was also repaired. After several weeks of recovery, doctors told me that I was cured, because that was what they believed in those days.

I always took antibiotics prior to dental visits, but 22 years after my first surgery, the antibiotics I took for a dental cleaning didn’t cover. I developed flu-like symptoms, which led to a diagnosis of endocarditis, an infection in the lining of my heart. An aggressive regiment of antibiotics eliminated the infection but months later I experienced cardiac failure. I thought I was drowning in bed. Twenty-two years of bad blood flow coupled with the endocarditis had damaged both my mitral and aortic valves. I had my second open-heart surgery to replace both valves with mechanical valves. I was placed on Coumadin. Six months after surgery, I again, began to get easily winded. Scar tissue from the two surgeries was now preventing the electrical impulse from getting through the heart muscle. A pacemaker was installed to deal with the third degree heart block.

Now, because of my mechanical heart valves, I test myself regularly for appropriate clotting. My local cardiologist monitors my pacemaker every six months. I am also followed by the Boston Adult Congenital Heart (BACH) Clinic at Boston Children’s hospital. One of my biggest fears prior to my first surgery was the scar. As a young woman, I dreaded the disfiguring scar on my chest. However, one year after my surgery, a woman pointed to my scar while I was changing in a gym locker room. “You’ve had open-heart surgery!” she gasped. It turns out her 3-year-old son was also born with an atrial septal defect. Surgeons wanted to operate but she always said no. She couldn’t allow her son to hurt. I sat with the mom, held her hands and we both cried. I gave her suggestions on how she could support her son through the entire surgical experience. I told her to think of it as giving him the gift of baseball and all the things I was never allowed to do.

From that day on, I never hid or felt ashamed about my scar. I see it as a gift because of the story it represents. I continue to include daily workouts at my local gym or when weather permits, I ride my bicycle along the coast of Rhode Island. I don’t compare myself to the world’s standards of fitness because I would never measure up. Rather, I continually strive to seek my own personal best, all within my own cardiac limitations. I also use the lessons I’ve learned, to speak nationally on the topic of living well with heart disease. I use humor to educate and encourage women. I have recently completed a memoir manuscript. I marvel at how modern medicine coupled with healthy life choices, have brought me this far. I also feel very blessed to share my story to uplift and encourage others.

How do you work with your doctors and care team to stay on top of your heart condition?

I have tremendous respect for medical professionals. I credit my doctors for my living well despite my cardiac condition. Each doctor has their own expertise: electrophysiology, adult congenital cardiology, internal medicine, gynecology, and dentistry. While I received life-threatening advice early on, that experience empowered me to be part of the conversation. I value my doctor’s time and expertise. I bring written questions to appointments. When I’m given advice, I follow it. I trust my doctors and I know they want the best for me. This team approach has created a win-win that has positively impacted my health.

What lifestyle changes did you make to improve your heart health?

When I was 42, my husband died of cancer. He had always been more committed to eating healthy and exercising regularly. Losing him taught me about the fragility of life. Being widowed provided the catalyst for improving my choices. I realized that if I did not embrace healthy lifestyle choices, our two kids could be orphaned. I now exercise six days a week. I eat healthy with an emphasis on organic fruits and vegetables. I eat a consistent diet which benefits my INR numbers. I use the MyFitnessPal app to keep track and stay motivated.

What challenges do you face? How are you able to overcome them?

As someone with a pediatric defect coupled with normal issues of aging, and a few unique challenges, like allergies to some antibiotics, I recognize I am a complicated patient. I monitor my INRs with both lab and home testing. I am blessed to work primarily from home. I strive to look for opportunities to laugh. I am an animal lover and my animal clan are great stress relievers. My black lab holds me accountable for our daily walks. In addition, I recognize when I need a break so I’ve learned the value of occasionally saying “no.”

Who is your support system?

I remarried two years after being widowed. My current husband has been Type I diabetic for more than 45 years. Together we make choices for optimum health and we both benefit from those choices. While we are not strict vegetarians, we limit our dairy and red meat to rare occasions. We buy organic whenever possible. We both enjoy biking and working out at the gym together. Our kids are grown but they, too, benefit from our family’s healthy living choices.

Do you have a personal motto? What inspires you?

Life is a tapestry. Cherish each thread. I have a strong faith in God and that faith is woven into every day.

Related

Spotlight on Congenital Heart Defects

Support for patients with congenital heart disease.

Cardiopulmonary Exercise Testing for Adults with CHD

Exercise testing provides useful information for patients with congenital heart disease.

Blood Clots a Major Concern for Children and Adults with CHD

American Heart Association releases statement with recommendations for preventing blood clots in patients with congenital heart disease.

Physical Activity Important for Children and Adults with Congenital Heart Disease

Individuals with congenital heart disease are encouraged to get active to promote better health later in life.

Surgery Becoming Safer, More Effective for Children with Congenital Heart Defects

Analysis of Finnish registries shows significant improvement in survival rates for children undergoing surgery for heart defects.