“I was one of the 60% who was diagnosed from just going to the doctor’s office for something else and I didn’t recognize the symptoms that I had, I didn’t relate to them at all.“
Susan is a sixth grade teacher and a heart valve disease survivor. Susan has decided to share her story to help others who are at risk for valve disease or are seeking treatment. She is a proud participant of the American Heart Association’s Heart Valve Ambassador team.
I was diagnosed with Hodgkin’s Lymphoma in 1983. I was 17 years old and I was treated with radiation and chemotherapy. Unfortunately, the radiation that saved my life, created a difficulty and complication 20/30 years later and I was diagnosed with Severe Aortic Stenosis. I was very fortunate to be able to have Transcatheter Aortic Valve Replacement (TAVR) in 2014, and had very excellent results with that. And today I am very grateful, teaching middle school full-time and leading a very active life. I just took a three-hour hike last weekend, so I am doing pretty well.
I may not present as a typical heart valve patient in a lot of peoples’ minds, because they may think of someone who is older than I am. I am 50. But my experience is right in line with many of the findings that present from the survey. I was one of the 60% who was diagnosed from just going to the doctor’s office for something else and I didn’t recognize the symptoms that I had, I didn’t relate to them at all. Fortunately, I had a family practice provider that was aware of things and referred me on to a cardiologist but, I did not notice the symptoms.
I had pretty low awareness about heart valve disease prior to my diagnosis. I had learned a lot more about it after it happened to me. And it did impact my quality of life. I was aware of the severe stenosis for a couple of years before I had the TAVR and my symptoms continued to get worse. I had shortness of breath, had to ultimately eliminate exercising, had some chest tightness and pain in the chest. I did definitely rely on a cardiologist for making the decision on my treatment and the impact on my life prior to the valve replacement became quite great. I was extremely fatigued with working and again had to stop exercising. It was surprising though prior to my diagnosis, the symptoms, I didn’t know at all. I just thought that the shortness of breath with exercise was I wasn’t in as good of shape, my lungs had some scarring from radiation, and I had some chest tightness and I thought that was just anxiety.
It is interesting how it can be misunderstood by the patient by not paying attention to the symptoms or understanding what they are. But, through it all, my treatment satisfaction is really high. I am able to exercise again- I feel really great. Shortly after TAVR, I came back to work and people were saying how much better I looked. And I felt better. I had so much more energy. I am so grateful that I was able to have this treatment. It has made a huge difference in my life and has been extremely meaningful to me to turn around and use this experience that I have had to help other people and give them hope and also educate others who may not be aware of their symptoms and the seriousness of it.