I didn’t know much about heart valve disease when I was first diagnosed with severe aortic stenosis, or a heart valve failure. My cardiologist explained that aortic stenosis occurs when the heart’s aortic valve doesn’t open and close normally and, as a result, the flow of oxygen-rich blood from the heart to the rest of the body is decreased. As I experienced firsthand, this can lead to symptoms that significantly impact your quality of life. Fortunately, proper treatment via valve replacement resolves these symptoms and gets your heart functioning properly again.
I’ve learned a lot after living with aortic stenosis for more than a decade. I’ve experienced my share of uncertainty, anxiety, and stress as a heart valve patient. And I’ve found the more I understand about my diagnosis, treatment options, follow-up needs, and expectations for the future, the more calm, confident, and empowered I feel about what’s next. Wherever you are on your aortic stenosis journey, it’s enormously helpful to educate yourself and learn what the path ahead entails.
Aortic stenosis is measured in degrees, categorized as mild, moderate, severe, and critical. Disease that is mild or moderate does not require treatment immediately. Because valve disease is usually a condition that progresses or worsens over time, a person with mild to moderate aortic stenosis can expect to be monitored closely by a cardiologist. Visits with the cardiologist will include an echocardiogram, which is a non-invasive, ultrasound test that allows your medical team to see a video of how your heart functions. This “echo” provides specific measurements that can be tracked over time; they determine the degree of your stenosis and if treatment is needed.
If your aortic stenosis is mild to moderate, your cardiology appointments may be spaced out every few years, and your life probably won’t be impacted much, if at all. It’s important to keep those follow-up appointments with your cardiologist and to make heart-healthy lifestyle choices: Eat lots of fresh fruits and vegetables, lean meats, and whole grains. Avoid processed foods, foods that are high in fat, salt, and sugar, and meals low in nutrition. Make sure you’re active and moving; research has shown that 150 minutes each week of moderate exercise provides multiple health benefits.
I learned the hard way that when it comes to aortic stenosis, ignorance is NOT bliss. Years ago, I was told I had mild stenosis, and the cardiologist said “someday” I might need a valve replacement. I assumed he meant decades later. I didn’t bother to learn about valve disease, I didn’t know the symptoms, and no one told me I would ever need to follow up with the cardiologist again. As it turns out, I ended up needing valve replacement much sooner than I ever expected.
Fortunately, I saw my family physician regularly. About five years after that cardiologist appointment, she noticed a change in the sound of my heart murmur, and she sent me back to the cardiologist, where I found out my stenosis had become severe. Because I didn’t know the symptoms of valve disease, I had dismissed the pressure in my chest and heart palpitations I had been experiencing as signs of anxiety. Because I had severe stenosis with symptoms, when I next saw the cardiologist, I learned I needed an aortic valve replacement. If I had been more informed, this diagnosis would not have come as such a shock.
The good news is that even though aortic stenosis is a serious condition, it is very treatable. Patients now have more choices than ever. It is important to discuss all your treatment options with your heart team and get opinions from both a cardiac surgeon and an interventional cardiologist who does minimally invasive procedures like transcatheter aortic valve replacement (TAVR), so you and your medical team can evaluate all your options and decide which treatment is best for you. Although traditionally, aortic valves have been replaced via open-heart surgery, in recent years, TAVR has been shown to be just as effective, with a much easier recovery. Instead of opening your chest surgically, with TAVR, a replacement tissue valve is inserted into the heart through a catheter that is threaded up through the femoral artery in the groin. The new valve is positioned carefully over the diseased valve and begins working immediately. I was back at work as a middle school teacher just two weeks after my TAVR procedure, feeling better than ever.
It’s important to understand aortic stenosis is a chronic condition that will require ongoing monitoring, both before and after treatment. Even though valve replacement is considered a cure for aortic stenosis, you will still need to follow up with your cardiologist once a year.
Tissue valves do eventually wear out, so it is quite possible you’ll outlive your valve and need a second valve replacement, which can likely be done via another TAVR, called “valve-in-valve” TAVR. Advances in valve design and in the methods used to place the valves are happening rapidly, so I’m optimistic my next valve replacement will go smoothly. I’m picturing it like going in for maintenance, and then getting back “on the road again” to live a full life, just like I did after my first valve replacement six years ago.
Whether you are living with valve disease before treatment or after, my best advice is to empower yourself with information about your condition, understand the symptoms to watch for, and follow up regularly with your cardiologist. Prioritizing your physical and emotional health gives you the best opportunity to live to the fullest. My new valve has given me a new lease on life: I can once again hike, exercise, and enjoy being active without becoming short of breath and easily fatigued. The journey from diagnosis to treatment was scary and challenging at times, but all in all, it was so worth it!
