My Teenager's HCM Story
My son, Paul (P.J.) Harris was diagnosed with HCM at the age of 14. He was born with pulmonary stenosis, which is a narrowing of the heart valve, totally nothing to do with HCM whatsoever. He has been seeing a cardiologist every year since birth to check on it. After 14 years of the same cardiologist something told me to switch doctors. I felt like I needed fresh eyes. His doctor would always harp on my son’s weight and say he needs to be active. He needs to exercise. It seemed like that is all he was concerned with.
I switched him to a Jacksonville cardiologist. We were driving to Gainesville at the time. Now I know that that decision to switch was ‘mother’s intuition’ and could have saved my child's life. At our very first visit the doctor said "There is a lump on your son’s heart wall and we don't know what it is". Umm, what?! She said it was noted in our last visit from the previous doctor yet he never mentioned it to me. She said come back in three months and bring tennis shoes. They would do a stress test and see what it looked like then. She said maybe it wouldn't even be there.
Three months later we came back. It was still there and it was thicker. It was then that he was diagnosed with HCM. After that first stress test they told him not to do any exercise at all. They said don't even jog around the block or do the weekly lawn mowing that I had instructed him to start doing after his previous doctor was harping on him to exercise and lose weight. It could have killed my child.
A mother’s intuition should never be ignored. We kept going back every 3-6 months and the thickness was slowly growing. They told me that my 16 year old’s heart during his stress test was that of an adult male triathlete. The fact that my son had zero symptoms but the pressures in his heart were that intense told the doctors that his first symptom could be his last. That is when the decision was made to do the septal myoectomy.
We were nervous, excited and terrified. We couldn't find anything on the internet from other children that were going through this. We clung onto our faith and pushed through. It was the only thing we could do. PJ spent six days at Wolfson Children's Hospital in ICU. The care he received was beyond anything I ever expected. The first twenty four hours were awful. The next forty eight were better. By day five, he was back to my sweet boy again and smiling. The doctors had told him that it would take him eight months until it wouldn't be the first thing he thought of every day.
After six weeks, he was driving for the first time. He got his first job two months later. His recovery was amazing. If you ask him how he recovered so well he will tell you it's 100% mental. His positive attitude has made ALL the difference.
He's now 18 years old. His scars have healed. At every check-up the his numbers get better and better. He's active. He plays basketball and exercises.
Never let anyone tell you that HCM defines you and your abilities. It doesn't! My son is proof. The doctors are blown away by the echo results now and how the thickening is gone. There is a 20% chance it can grow back. He isn't worried about that. He's been through it and can get through it again if he had to.
I always tell any parent that has a child that plays sports, get the echo. Pay the money. It can save your child’s life.
Story Credit: Nicole Wroten, mother of Paul (P.J.)
