By Kathleen Hutchinson
14 Jan

The Importance of Being Educated

Wednesday, January 14, 2015

Not being educated about one’s health or in our case, our congenital heart disease, can lead to additional health issues—even an emotional breakdown.

I have tetralogy of Fallot and it came as quite a shock when I found out that I had to have a “tune-up” in my later years.

Having my last corrective surgery at age nine, I absolutely had no idea that I had to see a specialist for care throughout my life. If someone told me, I do not remember. I knew to see a cardiologist and have an echocardiogram annually, which I did, most of the time. I say “most of the time” because there were many years where I did not see a cardiologist, namely one span of seven to nine years. When I did see a cardiologist, the results were always the same—everything looked great.

As probably with most of us, I thought shortness of breath with mild exercise and heart palpitations were a way of life. In August, I started to experience the worst of symptoms: increased shortness of breath with the simplest tasks, extreme fatigue, lack of sleep because I couldn't lie flat, a constantly racing heart, and a decrease in appetite, before I finally developed acute edema. At the time I was working in the middle of Alaska so seeking medical care was a bit of a challenge. I opted to wait until I reached the “lower 48.”

I experienced these symptoms for six weeks. Mid-September came and my obligation in Alaska was over. I had plans to visit my best friend from high school in Seattle before returning home to California. The minute I stepped off the plane, my life would never be the same.

My friend insisted we go straight to the emergency room from the airport. I gladly obliged because I just wanted to feel better. I was diagnosed with congestive heart failure and was in the hospital for two weeks.

In those two weeks, I had an ICD implant, an ablation, and learned I would need pulmonary valve replacement surgery in the coming weeks. For someone who has completed a number of 5k races and mud runs, walked 60 miles in three days, and thought that surgeries were a thing of the past and that I was healthy as can be, I broke down and cried for weeks.

I recall one of my doctors asking me, “When is the last time you felt really good?” I thought for a moment and I said I didn’t know. Later, I was looking through pictures and realized, it had been at least three to four years since I felt really good. Thinking back, my weight gradually increased during that time. I attributed it to poor diet, lack of exercise, and stress at work. I also remembered, I always said, “I don't look fat, I look bloated.”

From ACHA materials, I read that general cardiologists receive only six hours of education on congenital heart disease. Had I known to see a specialist, I believe, the specialist would have known that I no longer had a pulmonary valve. No pulmonary valve at all. The congestive heart failure and the emotional breakdown from learning that I had to experience open heart surgery possibly could have been avoided.

I had my pulmonary valve replacement surgery on November 24. I was in the hospital for two weeks due to complications with my ICD. According to the ACHD program coordinator, my situation of not being educated is not unique.

Now at 43, I found ACHA from a poster in my doctor’s office before the nurses could provide me with a brochure. I’m incredibly grateful that I have found this association and some of the best specialists in the country. My doctors, the blogs, webinars and discussion forum on the ACHA website has educated me about my disease and has opened my eyes on how important lifestyle changes are as well as living with congenital heart disease.

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