TAVR: It’s Like I Got New Batteries
I’ve had a heart murmur for as long as I can remember. I assumed for a long time that if it were problematic, a doctor would tell me I needed to take some action. But no one did, so I went about my life not thinking about it too much–until everything changed in December of 2019, when I was 59 years old.
I literally could not catch my breath.
The week before Christmas, I was doing leg lifts, part of my normal exercise routine. But all the sudden, I couldn’t breathe. I literally could not catch my breath. Nothing like that had ever happened to me before. My husband rushed to call 911 and it felt like a scene from a movie. EMTs loaded me into an ambulance and I was surrounded by lights and sirens as we sped to the hospital. I stayed there for three days and two nights, and I went home with no answers. I had to wait until January for a follow-up.
I’m a very active person; I’m retired now, but for many years I worked full time while raising my two sons with my husband. I would swim in the summer and go for long walks a few times each week. I love to cook and grow vegetables in my garden, and I volunteer with a golden retriever rescue so I’m always chasing a dog around the house. But that Christmas, I was a mess. I didn’t know what had caused my breathing problem, so I was afraid to do just about anything. It was still hard to breathe well and I was scared all the time that I’d have another emergency.
At my appointment in January, the doctor told me I’d had flash pulmonary edema–the sudden inability to breathe properly resulting from fluid buildup around the lungs. It can occur when the heart isn’t functioning as it should. At the end of my visit, another doctor came in and said, “You’re going to need open-heart surgery. You’ve got a really tight valve.” They didn’t offer me much more information. I remember getting in my car afterwards, calling my husband in tears. Open-heart surgery seemed so extreme, and I didn’t know what was really going on.
I eventually learned I’d been diagnosed with aortic stenosis, which meant my heart’s aortic valve wasn’t working properly and my body wasn’t getting the oxygen it needed. The few people I told said it must not be serious, because otherwise the doctors would’ve moved more quickly. But I did some research and it seemed like my pulmonary edema was a warning sign that the clock was ticking. I wasn’t happy with my doctors or how slowly everything was going, so I knew I needed to advocate for myself.
“We’re going to take care of you.”
I heard that an interventional cardiologist at the hospital was giving a talk about transcatheter aortic valve replacement (TAVR) for people with aortic stenosis. I had no idea what TAVR was, but I was desperate to talk to someone who could give me answers. At the presentation, the cardiologist, Dr. Alfred Valles, was wonderful. We learned TAVR is an alternative to open-heart surgery for aortic stenosis, in which the doctor threads a replacement valve up through an artery to the aorta–they only have to make one small incision. The replacement valve opens up and immediately takes over from the diseased valve. It’s way less invasive than open-heart surgery and recovery time is minimal. I told my husband, “I have to see him.”
I scheduled an appointment and Dr. Valles listened to my heart. He said I needed a new valve as soon as possible; it was in bad shape. It was scary to hear that, but also a relief–it was the first time I felt like somebody really listened to me. He told me, “You’re at the right place. We’re going to take care of you.” I knew I was in good hands.
I got started with some testing and lab work so my heart team could determine the right method of valve replacement. They needed to know if something else was wrong with my heart, which would require open-heart surgery. Plus, at that time, TAVR wasn’t as commonly performed in people my age. The U.S. Food and Drug Administration (FDA) had recently approved TAVR for patients like me, who had a low risk of complications from open-heart surgery. TAVR has been performed for years, but the approval process started with older, higher risk patients before getting to younger, healthier people.
In the meantime, I was not doing well. I had to prop myself up on pillows to sleep because I could hear my heart pounding in my head. I was afraid to do much of anything–but I did keep walking. To walk a mile, I’d have to take three breaks, and afterwards, I’d have to sit down and rest. It was all I could do.
Finally, my heart team decided I’d have the same outcome whether we went with open-heart surgery or TAVR; they said it was my choice. I told them, “I’m going to go for the TAVR.”
“You’ll feel better almost immediately.”
The morning of my TAVR, I was prepped for the procedure next to a man who was having open-heart surgery. They told him he’d be in the hospital for about a week, that he’d need to take a blood thinner and other medication afterwards, that his recovery time could span months. I kept thinking, “That could be me over there.” When it was my turn, they just said, “If everything goes well, you’ll be home soon and you’ll feel better almost immediately.”
They brought me into the procedure room, I lay down on the table, and an hour later, it was over. Afterwards, I felt no pain. In fact, there was no pain at any point in my recovery. I was moved into my own room later that afternoon and got right out of bed to sit in a chair. Not long after that, I was walking the hall. I felt good. And I went home the next morning.
Once home, I wanted to see what it felt like to walk with my new valve. I started walking up and down the hallways of my house, and that night I went for a little walk outside. I increased my walks every day after. A week later, I could walk two miles comfortably.
I decided I needed to do whatever I could to keep myself healthy. I started following a no-sugar, low-carb diet, and I lost quite a bit of weight. I had a follow-up telehealth call with Dr. Valles after a week, and he said that I should keep doing what I was doing. In two weeks, I was back in my pool. And I realized I no longer felt like there was an elephant on my chest. When I couldn’t keep up with my friends while we walked, I thought I was just in bad shape. I thought it was because I was getting older. I didn’t realize at the time how bad it really was.
I feel like I can do anything.
Today, I have so much more energy–it’s like I got new batteries. Now, my friends can’t keep up with me. I walk about five miles each day, rain or shine. I swim often and stay as active as I can. I feel like I can do anything. I’m so grateful for my new valve because it’s been life-changing. And finding the right interventional cardiologist was the biggest part. I’ve always had a really loud heart murmur. Now, I don’t. Until I found Dr. Valles, I couldn’t get the help I needed. That’s why I tell everyone to find a doctor they trust and feel comfortable with. Keep working and searching until you make that connection.