Read more about the Rock from the Heart Mission and find links to more information HERE.
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In March of 2015 my husband went in for a routine physical. The doctor heard a heart murmur and scheduled Pete for an echocardiogram.
Pete got a call later that day and was told he had a 5 cm ascending aortic aneurysm and moderate aortic stenosis that would require surgery. I’d never heard of these conditions. When I looked it up on the internet and learned what it was, I felt sick.
We met with Pete’s primary care doctor later that day, and he explained everything to us. He told us that we were very lucky it was caught early. He said, “this is fixable.” A few weeks later, we met with a cardiologist,who didn’t see any urgency to get the surgery now. “We don’t operate until it is 5.5 cm,” he said. When Pete asked him if this was hereditary, the doctor said, “no.” He said the office would call to set a followup appointment in 6 months.
Six months later we met with a different cardiologist, who seemed more concerned about the aneurysm. He sent my husband for a contrast CT so they could get a more accurate measurement. The scan showed the aneurysm was slightly under 5 cm, so we decided to watch and wait for another 6 months. The doctor said he was confident it would be okay to wait, but not for too long. We also met with a surgeon who agreed it was safe to wait. Pete would be monitored every 6 months to check progression of the aneurysm and stenosis. He explained in detail what the signs and symptoms of aortic dissection were and to call immediately if Pete experienced any symptoms. If the aorta tears, you don’t have much time and most people don’t survive it.
At Pete’s May 2017 appointment, the aneurysm was at 5 cm, and the stenosis had progressed to severe. Pete said, “I guess it’s time to man up and get this fixed,” and we scheduled surgery for July 12, 2017. Thankfully, the surgery was a success. After he got home from the hospital, Pete followed doctor's orders, attended all is cardiac rehab sessions and gradually began to feel like himself again.
The thing that stands out to me about this experience is that were initially told this wasn’t a hereditary condition. Our second cardiologist told us that it WAS hereditary. It does run in families. I didn't like that we were given conflicting information on that first visit. We should have been told that Pete's immediate family members needed to get tested.
Pete and I decided that once he recovered, we would find a way to help others by raising awareness of this silent killer. When Pete’s condition was discovered, he had no symptoms. He felt fine. Had his doctor not heard that murmur and sent him for the echo, I’d be telling a very different story.
Now it is our turn to give back.
Pete and Amy Johnson
Rock from the Heart Founders
To provide accurate information about thoracic aortic aneurysms, aortic dissection, and aortic valve disease by reaching out to the community through music.
Rock from the Heart events help bring the condition into the forefront. We are committed to increasing public awareness and to improving the diagnosis and management of these life-threatening conditions.
As many as 11 million Americans have heart valve disease (HVD)—a potentially disabling and deadly disease—yet 3 out of 4 Americans know little to nothing about HVD.
Join the movement to raise awareness about heart valve disease and protect patient lives.
Learn more about the campaign HERE
Aortic Disease Awareness Day is September 19. It is a focused effort by physicians, researchers, patients, family members, and many organizations to raise awareness about aortic disease around the world. It is a day to create community for people who care about aortic disease, celebrate survivors, and share information that can be life-saving for people who are at risk.
Learn more HERE