February is heart month. So many things of the heart to celebrate. My favorite involves flowers and chocolates. But something else near and dear is my actual ticker. I’ve had two open heart surgeries to correct a congenital (meaning I was born with it) heart defect. I don’t remember my first surgery, but my Dad sure does (you can read A Letter From Dad if you need a cry today), but I certainly remember my second surgery and the emotional, physical, and mental toll it took on me.
I know February is coming to a close, but it’s not over yet, and I wanted to create some awareness about Adult Congenital Heart Disease (ACHD) and give a little love to all my scarred friends with murr-murrs.
Congenital heart defects are the most common of all birth defects. Often they can go undetected. Thankfully mine was discovered shortly after my birth.
I was born with Pulmonary Valve Stenosis. It’s the most common congenital heart defect affecting 7-10% of all congenital heart disease (CHD) patients. The leaflets of my valve were fused making it extremely difficult for blood to pass through the valve into my lungs. I had one corrective surgery just 12 days before my first birthday.
And that was supposed to be it.
Here’s the deal. Most babies and children that had their pulmonary stenosis corrected were told the problem had been solved and that there was no foreseeable surgeries or issues for the heart.
But that’s quite the opposite.
There are two issues I want to bring awareness to today:
#1 Unfortunately many ACHD patients think they are ok. They were told they’d be fine and they don’t go and get heart check ups. Now that CHD patients are living longer, doctors are finding in many of their patients there is a need for follow up surgery. These hearts with removed pulmonary valves are working extremely hard and causing the right ventricle to become enlarged. This can lead to dangerous arrhythmias and eventually heart failure. Thankfully a new valve can be “installed” through surgery and there is usually a great outcome (hallelujah!).
That was me. I was told I’d be ok. You can even read on my 1984 surgical notes that everything regarding my heart was corrected and there would be no foreseeable interventions with my pulmonary valve. I felt pretty good. I had no real cardiac issues. But my heart was enlarging and could have been a ticking time bomb without routine visits to the cardiologist.
#2 If ACHD patients do follow up with a cardiologist they might be like me, going to any random cardiologist instead of a physician who specializes in congenital heart disease in the adult. A lot can be overlooked by physicians who are not specialized-it’s not their fault, it’s just ACHD is a relatively new field because these babies with heart defects are growing into adults. We need specific and specialized care.
I googled “cardiologist” to find a heart doctor when I moved to Denver. I ended up seeing a coronary heart specialist. Coronary disease is quite different than congenital heart disease. But I went anyway. At that appointment I was told I needed surgery and to find a heart surgeon. Talk about an overwhelming task. My husband and I searched and prayed and guessed, and met with a heart surgeon. He was wonderfully kind. He also admitted he repairs a pulmonary valve about once every three years.
Thankfully he had my best interest in mind and sent me over to Children’s Hospital. I met with a congenital heart surgeon and instantly a whole new lovely world opened up for me. I suddenly wasn’t an anomaly. I wasn’t being asked if all the other heart doctors and PAs and nurses could take a listen to my heart. No one was scratching their head.
I found a home.
My encouragement for anyone who has CHD is to be brave and get your heart checked out and to find a physician who specializes in adult congenital heart defects.
I had no idea help specific to me existed. Maybe you didn’t either.
Check out the Adult Congenital Heart Association for more information and a list of doctors and facilities that specialize in ACHD.