Life After TAVR: Managing Uncertainty About My Valve’s Future
As a younger person living with valvular heart disease, I’ve learned to think of my aortic stenosis (AS) as a chronic condition to manage for the long term, rather than an issue to be fixed and forgotten. Yes, my diseased aortic valve was replaced with transcatheter aortic valve replacement (TAVR), during which my doctor implanted a new bioprosthetic, or tissue, valve over my damaged valve–but now that valve is almost seven years old. The need for another valve replacement crosses my mind more often than it did during the “honeymoon” phase of the first few years after my TAVR.
If you’re like me and had aortic valve replacement before age 65, it’s likely that you will outlive your tissue valve, so it’s important to have a plan for lifetime management.
Before my TAVR, my aortic stenosis caused me to feel exhausted, and I became short of breath just walking across the room. I felt a constant sense of pressure in my chest, along with heart palpitations that would unnerve me when I was trying to fall asleep. Getting my new valve was such a relief, and I felt better immediately. But I knew it wasn’t forever.
My doctor told me that over time–potentially 10 to 15 years–all tissue heart valves degenerate and eventually need to be replaced. He explained no one can predict or guarantee how long any valve will last in an individual person, so data over time is used to provide estimates for valve longevity. Since TAVR is a newer treatment, we don’t yet have enough data to make precise estimates for TAVR valves, but he believes the early data is promising.
An option for replacement that doesn’t involve open-heart surgery is valve-in-valve transcatheter aortic valve replacement (ViV TAVR). ViV TAVR is a minimally invasive procedure in which a bioprosthetic aortic valve is inserted into a catheter through a small incision in the groin. The new valve is threaded up into the heart and placed tightly into the opening of the degenerated valve, pushing the old valve leaflets aside. A ViV TAVR procedure can be an option to replace both surgical and TAVR valves. Your heart team can determine if this is an option for you.
I sometimes feel a twinge of anxiety creep in when I think about needing another valve in the future. It helps me to know that my interventional cardiologist has a plan in place to manage my care. When the time comes to replace my current TAVR tissue valve, my doctor plans to do a valve-in-valve TAVR; my heart team told me about this while planning for my TAVR seven years ago, so I’ve kept it in mind. This is a comfort, because although I don’t know exactly when I’ll need a new valve, I do know what will happen when I do.
Having a plan in place for my next valve procedure gives me confidence to manage the unknowns about how long my TAVR valve will last. In the meantime, I’m grateful for the opportunity to live a full life today. To give myself every possible advantage, I’m proactive when it comes to my health: I focus on a heart-healthy lifestyle that includes healthy eating and 150 minutes of moderate exercise each week. I manage day-to-day stress with self-care that includes knowing my limits and no longer pushing myself past those limits, and I make sure to prioritize sleep. I’m also consistent with follow-up appointments with my regular cardiologist. I see her at least once a year for a physical exam, bloodwork, and an echocardiogram–and more often if I notice any symptoms that she has told me to watch for and report to her, like shortness of breath, fatigue, chest pain, heart palpitations, or swelling of my legs or ankles. Decreased exercise tolerance and waking up in the night feeling short of breath are additional symptoms she asks me about at every appointment.
It's important to have a support team in place as you navigate the ups and downs of living with aortic stenosis. I’m thankful I’ve connected with medical providers I trust and feel comfortable with. I didn’t find that with the first doctor I saw, and it was worth the effort to get a second opinion. I lean on friends and loved ones when I need it, even when it’s hard to ask for help. If you’re wrestling with uncertainty about your situation, I share specific tips that helped me manage the anxiety of facing heart valve replacement here.
My TAVR experience was life-saving and gave me back my quality of life. The ease of the procedure itself and of my recovery amazed me. With continuing medical advancements and the expertise of my heart team, I’m confident that my valve disease can be managed successfully, giving me many meaningful years ahead.