Those who know her say that Susan Strong lives up to her name. A synopsis of her medical resume proves she’s had her share of adversity: Diagnosed with Hodgkin lymphoma at age 17, her cancer was treated with six months of chemotherapy and six weeks of high dose radiation. Her cure came with a cost: The radiation to her chest caused her heart valve to develop severe aortic stenosis years later. The previous radiation also made it risky to replace the valve via standard open-heart surgery. Because of this increased surgical risk, Susan had transcatheter aortic valve replacement (TAVR) in 2014 at age 49. Almost three years later, at age 51, she was diagnosed with an aggressive form of breast cancer almost certainly caused by the earlier radiation. Starting in the fall of 2017, she underwent a double mastectomy, 12 rounds of chemotherapy treatments, and reconstruction surgery. By late November 2018, she will have completed an additional 17 rounds of Herceptin infusions.
She not only has firsthand experience of adversity, but also of resilience. When she speaks, others listen — be it her classroom of middle school students, a roomful of cardiologists at a national conference, or a stranger with aortic stenosis who found her by way of either a Facebook support group, the American Heart Association Support Network, or her own website stronglifenow.com. Currently she is on medical leave from her life as a teacher, but she is still an active American Heart Association Heart Valve Ambassador. She also serves as president of Heart Valve Voice, a non-profit advocacy group for heart valve patients.
Like many heart valve patients, Susan’s story began with a heart murmur. Around 2008, a visit to a cardiologist produced a wait-and-see diagnosis. The doctor didn’t say anything more about it, and Susan didn’t ask. She had no idea that a murmur was connected to valve disease. “I’d heard so many other people at various times mention having murmurs that I thought it was a variation of normal,” she said. Then in 2013, she was visiting her primary care doctor for something else. “She mentioned that my murmur was changing and sent me back to the cardiologist,” she said. Susan was having symptoms — shortness of breath, fatigue, tightness in her chest, palpitations — but ignored them. “At my age (48) and my general good health, I did not connect those things to my heart. I actually mistook my symptoms for anxiety.”
It had been five years since her original visit to the cardiologist, and in that time, she went from mild stenosis to severe stenosis requiring a valve replacement. “My cardiologist was upset with me for waiting five years for a follow-up, but I didn’t know. I was completely unaware of the seriousness of my situation,” she said.
Super survivor Susan Strong with her care partner, Darryl.
She lived in Colorado Springs at the time, and her local cardiologist said replacing the stenotic valve would require open-heart surgery and referred her to a teaching hospital in Denver. There she learned that she was a candidate for the TAVR procedure. Similar to a stent placed in an artery, the TAVR approach delivers a fully collapsible replacement valve to the valve site through a catheter. Once the new valve is expanded, it pushes the old valve leaflets out of the way, and the tissue in the replacement valve takes over the job of regulating blood flow.
As a result of radiation, Susan has what is called “hostile chest,” which makes opening her chest for surgery risky. That was one reason Susan was a good candidate for TAVR, which was a relief because she didn’t relish the thought of open-heart surgery. But that did not mean she looked forward to TAVR without fear: “I was terrified, and I’ve come to learn that others are too,” she said. (See more about TAVR at the end of this story.)
But the catheter procedure went well, and she was back at work full time in two weeks. “I didn’t have a long period recovering from it. I was better immediately,” she said. “I had more energy, could breathe better, wasn’t fatigued, could walk and not get out of breath. As soon as I returned to work, my colleagues kept commenting on how much healthier I Iooked.”
Susan was well aware that everyone’s story doesn’t turn out as well as hers: The same year she was diagnosed, three of her friends died of aortic stenosis. That might focus the mind: “I remember thinking I would not live to be 50. And I still have a sense of a shortened lifespan because of the effects of radiation,” she said. “So, it’s incredibly important to me that I leave a legacy and make a difference with these second chances that I’ve been given. I just really want to help other people.”
She started a support group in Colorado Springs soon after her TAVR, and she got involved in the AHA Support Network and became a Heart Valve Ambassador. New patients often read her story online and visit her website. She loves connecting with them and sharing the good news that aortic stenosis is treatable and may not require open-heart surgery. At an American College of Cardiology conference this past March, she was part of a panel with Dr. John Carroll, one of the interventional cardiologists who did her TAVR procedure.
Last summer after following the university hospital procedures for volunteer observers, she was allowed to observe four TAVR procedures in the hybrid operating room: “One was a low-risk clinical trial. Then I saw two different brands of valves put in. I saw one woman get the smallest valve made, and one man got the biggest. One patient’s heart stopped and needed a pacemaker. I talk to so many people about TAVR, it was really interesting and informative to see all that,” she said.
Two weeks later she witnessed an open-heart valve replacement, again because she talks to so many people who are choosing between the two. “It was fascinating,” she said. “Watching the open-heart procedure up close, my mind kept racing with the thought: ‘How is she still alive?’”
Susan has talked to many medical professionals, and her consistent message to them is that no matter how their patients might appear, they’re feeling anxious about the procedure they are about to undergo. “That’s something that people talk about in these groups that I think doesn’t necessarily come up at the doctor’s office,” she said. “Patients are not as open about that. Anxiety isn’t just mental, there are lots of physical symptoms of anxiety that are very difficult to endure, and sometimes medication can be a great help. It’s important for patients to bring this up with their physicians.”
Susan counsels lots of patients and family caregivers. “I tell them that it’s very treatable, and that it is important to live a healthy lifestyle because that’s going to help you recover,” she said. “I tell them to reach out for support, don’t try to do this alone. Find other patients to connect with, whether it’s in person, over the phone, online, with the support network, or in Facebook groups — wherever you find it. Ask your doctor for the name of somebody who’s already had the treatment who’s willing to talk to you.”
Caregivers play an important role in recovery. “I actually prefer the term ‘care partner’ because I think you’re really partners in this disease — you’re partnering together to support each other. Often spouses or adult children are the ones who are really seeking information about treatment. It really impacts both people, and both really need to practice self-care and try not to take on too much and try to be there for each other.”
She makes a point of acknowledging her significant other. “Darryl has gone to every appointment with me and wrote questions and took notes,” she said. “And now he’s doing that with breast cancer only three years later. He’s pretty amazing.”
“A lot of people don’t know a lot about valve disease, their risks, the symptoms, their options,” Susan said. “I know because I was one of them. Fortunately, I have had a happy ending, so I want to pay it forward. I tell patients that it’s okay to let this experience change you. You’ve been given a second chance at life, let it change you and give yourself permission to follow your heart and do whatever really feels meaningful to you.
“For me, I was really inspired to share and help other people. I was only in my 40s, not the typical aortic stenosis patient. I felt very different and alone. It just felt hard to me, and I didn’t want it to be so hard for people coming after me. I wanted to create ways to make it easier for others. The night before the first AHA article went up on heart.org, I stayed up till 2 in the morning to create my website because I wanted to have a place for people to go and find out more and to be able to reach me. I write back to every person who reaches out to me.
“Being a Heart Valve Ambassador gives me so much joy, that’s the only way to explain it. Just a few days ago, I was having a follow-up echocardiogram done. Sitting in the cardiology waiting room, a man about my age came up to me and asked, ‘Did you have TAVR?’ I smiled and said ’Yes!’ He said, ‘I saw your (AHA) video online. I’m having TAVR here tomorrow. I live in Wyoming. You’re the reason I’m here having TAVR.’ We took a selfie and I spoke a bit with Michael and his wife, Tammy. We’re connected on Facebook now. He sent me a message to let me know his TAVR procedure was great and he went home the next day,” Susan said. “Even on my toughest days, knowing I’ve made a difference for someone else makes me feel great!”
She really does live up to her name.
This information is provided as a resource to our readers. The tips, products or resources listed or linked to have not been reviewed or endorsed by the American Heart Association.
What is Transcatheter aortic valve replacement (TAVR)?
Transcatheter aortic valve replacement (TAVR) is a minimally invasive procedure that repairs the valve without removing the damaged valve. Using a catheter, a replacement valve is inserted inside the diseased aortic valve. Once the new valve is expanded, it pushes the old valve leaflets out of the way, and the tissue in the replacement valve takes over the job of regulating blood flow.
What is involved in a TAVR procedure?
Usually valve replacement requires an open-heart procedure in which the chest is surgically opened. The TAVR (also called TAVI — “valve implantation”) procedure can be done through very small openings that leave all the chest bones in place.
The replacement valve is delivered through a catheter either inserted through the femoral artery (a large artery in the groin); or inserted through a small incision in the chest and entering through a large artery in the chest or through the tip of the left ventricle.
A TAVR procedure is not without risks, but it provides beneficial treatment options while also providing the added bonus of a faster recovery in most cases. A patient’s experience with a TAVR procedure may be comparable to a balloon treatment or even an angiogram in terms of down time and recovery, and will likely require a shorter hospital stay (average 3-5 days).
Who is a good candidate for this type of valve surgery?
At this time, the procedure is reserved for those people for whom an open-heart procedure poses intermediate risk. For that reason, most people who have this procedure are in their 70s or 80s and often have other medical conditions that make them a better candidate for this type of surgery.
TAVR can be an effective option to improve quality of life in patients who otherwise have limited choices for repair of their aortic valve.
Is there any type of financial assistance for people in need of TAVR valve replacement who lack necessary funds or healthcare coverage for the procedure?
TAVR is approved and available for qualifying patients receiving Medicare and Medicaid. More information is available on the Centers for Medicare & Medicaid Services (CMS) website. Learn more about healthcare laws and government programs seeking to provide affordable coverage at the HealthCare.gov website. The Heart Valve CareLine can help you navigate the insurance and medical world as it relates to your diagnosis.
Visit Heart.org for more on TAVR.