By AMERICAN HEART ASSOCIATION NEWS
A hiker and healthy eater, Susan Strong was surprised to hear she needed heart surgery last year at age 49.
But radiation therapy she had received more than three decades earlier to treat Hodgkin’s lymphoma had taken its toll: Strong had developed severe aortic stenosis and regurgitation. Stenosis is a narrowing of the aortic-valve opening that restricts blood flow, and regurgitation is the name for leaking heart valves.
“I was completely shocked when I found out I was going to need a valve replacement,” Strong says.
Leading up to the surgery on Nov. 12, 2014, old thoughts that had haunted her ever since her cancer diagnosis at 17 reemerged: doubts about whether she’d live to 50.
Now, the Colorado Springs, Colorado, middle-school teacher is back to health and back on the hiking trails. She’s also joined the ranks of the newly established American Heart Association Patient Ambassadors.
As an ambassador, Strong is sharing her story online and in person to support fellow patients—and even to inspire her students to dream up inventions like the one she credits with saving her life.
That invention is called transcatheter aortic valve replacement, or TAVR. It’s a fairly new procedure that involves inserting a replacement valve into the old aortic valve’s spot using a catheter; in Strong’s case, the catheter was inserted into the femoral artery.
The procedure is minimally invasive and allows the patient to avoid open-heart surgery.
“When I found out I could have TAVR, I posted on Facebook that I felt like I won the lottery,” Strong says.
She was still nervous for the surgery, naturally, but 47 hours after it was completed at University of Colorado Hospital in Denver, she got to go home (with just a quarter-inch scar in the groin area) and even attended an all-day seminar the next day.
Over the last year, Strong has taken her story to the public to help others in similar situations. She founded a group in Colorado Springs called One Simple Step, aimed at offering support to those who wish to eat healthier, exercise more regularly and make other positive changes.
She posted online a four-minute Flipagram video with photos of her medical journey and shared the video with her sixth-graders.
“Maybe you can be doctors, scientists and engineers and invent things like this,” she told them about TAVR.
And as an American Heart Association Patient Ambassador, she hopes to encourage others coping with heart disease.
“When you can transform suffering into something of value that helps other people, I just think that’s what humans need to work towards,” Strong says. “You’re able to look back and embrace every part of your life and see that something good and beautiful can come of it.”
Just recently, a hospital staffer contacted Strong and asked if she were willing to talk with a man in a similar situation. She met him for lunch and felt gratified to help out.
“Just to know your life isn’t over with your diagnosis—the encouragement that gives is huge,” she says. “That’s what I want to give to others. Being an ambassador through the American Heart Association is a big part of that. I want to take what I’ve been through and encourage people and give them hope that they can live a full life.”
With her new valve, Strong won’t let anything hold her back. This past summer, she went hiking in Hawaii and Ireland.
This fall, she’ll celebrate her 50th birthday with, of course, a hike—this time closer to home but somewhere she’s never been, Hanging Lake in Colorado.
Susan, we are so blessed to have met you this year as a volunteer and a friend. Happy early valversary and early birthday. Two huge milestones coming up!
Thank you so much, Allison!! I am amazed at the wonderful opportunities that have appeared in my life since my TAVR procedure last November. I would have never dreamed I would have the chance to encourage others along the way. I feel SO fortunate in so many ways!
Susan – you are an inspiration to all of us and future TAVR patients. Keep up the good work.
Awww, thank you, Cindy!! I’m where I am because I had an amazing, caring, talented TEAM taking care of me! I feel very fortunate!
Great story and congratulations on your Ambassador Actions!
I studied your picture and tried to determine which trail you were on. Years ago, while living in Colorado Springs, I made the mistake of challenging an Army Colonel (at Ft. Carson) to hike up Pikes Peak. He accepted the challenge and off we went. I thought I was a goner. As we neared the summit, a young couple came jogging up the trail. smiled, said “Hi”, and continued jogging on up. I’ll never forget that moment! We finally made it to the top and of course took the tram back down. For those who have yet to visit Pikes Peak, it rises up to over 14,000 ft. I’d never make it today – even with a good aortic heart valve!
All tje best!
I didn’t realize you had lived in Colorado Springs! Was “the Incline” a big deal then? It is near the Barr Trail that goes up Pikes Peak. It is a stairway straight up made from railroad ties. It used to be an old rail track. I’ve only done it three times. It’s a challenge. Some locals are regulars on the incline! I’m with you, even with a great new valve, I’m not adding the Incline to my regular exercise routine! 🙂
Susan you have always been an inspiration. So proud of you.
Thank you, Elaine!!! 🙂 It means a lot for you to take the time to read and comment! <3
Loved your story. Thank you so much for sharing with us and educating everyone on this topic. Specially, from a patient point of view. I am glad that it all worked out for you and your family. Unfortunately, it was not the case for my dad. He passed away 4 years ago due to heart condition. My question to you or anyone in your network is related some of the pro-active measurements I should be taken given the history of my family with heart diseases. Do you have any heart test recommendations that could helpful for an initial screen for heart deceases? Doctors or even clinics that you would recommend around the country?
Any help or recommendations on this topic would be greatly appreciated.
Thank you for taking the time to comment. I am very sorry you lost your dad to heart disease. It is a reminder to us all of the seriousness of what we are facing and the importance of doing everything within our power to give ourselves the best chance for survival. My greatest hope for us all is that we may find the path not only to surviving, but actually thriving.
There are many great resources on heart.org. Have you had a chance to look at those that are related to your condition? Also, there is a link to the AHA Support Network above, right under the article.
Luis, I can’t recommend specific screenings or tests, but I encourage you to make an appointment with your primary health provider and discuss your concerns and ask for his/her recommendations for appropriate screening.
Also, and this last advice is extremely important. Do EVERYTHING you can do to make small consistent changes toward the healthiest lifestyle possible. It has made a HUGE difference in my life. I have a website: http://stronglifenow.com Please come check it out. And watch my flipagram linked in the article. I’m happy to chat with you more about ways you can make small, simple lifestyle changes that make a big difference in your health and well-being.
All the best,
What a beautiful story about Susan’s heart journey…a strong survivor through and through!
Thank you for the kind words, Amanda! <3
Susan, your story is an inspiration. I am pleased with the advancements in valve replavement. My aorta valve was replaced in April 2012. I asked my Dr. about TAVR instead of having my chest opened a second time. I had bipass surgery in 1999. I was told at 72 I was not old enough or weak enough to have TAVR. I spent 3.5 days in hospital the second time. Only 2 days when my vessels were replaced.
Well things get better over time I am pleased to hear you are doing well. I run foot races with my Grandchildren thanks to the Edwards Aorta valve. Life is great.
Thank you for your story.
Thanks for taking the time to comment! I love hearing YOUR success story and that you are doing so well! Keep on giving those grandkids a run for their money!!
Re the incline railway: When we were climbing Pikes Peak, the Mt. Manitou Incline Railway was the way we started.the climb. We rode to top of its run and it was from there that we started our climb. The railway was as good as any Disneyworld ride! The biggest “worry” was that the cable would break and you would go shooting down the mountain. We were reassured by the operator that there was nothing to worry about. Colorado “Springs” would save us;
Dear Susan, I am 66 years young, and recently diagnosed with heart failure. I also have 2 valves that have been damaged from radiation(in 1975) for treatment of Hodgekins lymphoma .
I am currently struggling with my new medications, and have been on the web trying to educate myself.
I am glad I came across your story, like you, I was surprised that I had heart problems. Your story confirmed my doctor’s suspicion that the radiation was the culprit.
Glad to be alive, and your story encourages me to be optomistic. I also may be facing valve replacement surgery.
Thank you for listening.