Larry Haffner is a busy guy. The retired research sociologist and computer science teacher, along with his wife, often venture out to antiques stores in search of one-of-a kind relics, especially old cameras and vintage telephones, to admire and display. Haffner, a Mended Hearts member-at-large in the St. Louis, Missouri, area, is also an avid reader, often driving to local bookstores to grab some coffee and read book jackets.
“I absolutely love to go to bookstores or newsstands to browse and overspend on magazines,” Haffner says. “I’ll read some there with a cup of coffee, or take a bunch home. And I even browse the racks of books and read jackets — just to see what I want to point and click and send to my Kindle.”
But when simple trips to the bookstore became too tiring for Haffner, he knew something was wrong. In 2012, his doctor confirmed that Haffner had aortic stenosis and took a wait-and-see approach to see how the disease progressed. So, Haffner used that time to educate himself about the disease and treatment options. And thanks to good timing, Haffner discovered he was a candidate for a trial that allowed younger patients like him to avoid open-heart surgery and instead have a valve-replacement procedure through a less invasive method.
Every year, about 5 million people in the U.S. are diagnosed with heart valve disease. It may occur in a single valve or in a combination of the heart’s four valves, but the most common areas a ected are the aortic and mitral valves.
According to the U.S. Census Bureau, about 2.5 million Americans over the
age of 75 suffer from aortic stenosis, most commonly as the result of calcium deposits building up on the aortic heart valve. The build-up causes it to narrow and reduce blood ow to the rest of the body.
“Valvular heart disease is a pretty important disease, particularly for the older population,” explains Roxana Mehran, M.D., Director of Interventional Cardiovascular Research and Clinical Trials at Mount Sinai Hospital. “It affects both men and women, and the prevalence is actually greater than the number of diagnoses we’re seeing.”
Without treatment, aortic stenosis can become severe aortic stenosis, or SAS, which is life-threatening. Patients diagnosed with SAS have a survival rate as low as 50% two years after diagnosis, and 20% at five years after diagnosis unless they have aortic valve replacement. (To compare, that is a lower survival rate than breast, lung, colorectal or ovarian cancer.)
One of the biggest problems with aortic stenosis is that many of the disease’s symptoms — which can include shortness of breath, angina, fatigue, heart palpitations and other complications — are often overlooked or misunderstood. According to a 2005 study published in European Heart Journal, many of the symptoms of aortic stenosis are often passed off as “normal aging.” That’s a mindset that Dr. Mehran says needs to change. Patients must become more educated about heart valve disease — and more proactive in making sure they’re receiving the care they need. “The diagnosis of ‘aging’ should only be made if every other possibility has been excluded,” she says.
However, according to a 2009 study published in the Journal of Heart Valve Disease, as many as 50% of patients whose echocardiogram shows evidence of heart valve disease are not referred to a surgeon for further exploration.
“If you’re not getting the answers you need, get a second opinion. Have a cardiologist listen to your heart and have some sort of imaging technology done so you can rule out heart disease,” Dr. Mehran advises. “The earlier the treatment begins, the better the results will be.”
“In the past, we thought that the answer to valvular heart disease was medication to deal with the symptoms, then to wait until it got bad enough to have surgery,” Dr. Mehran says. For years, this meant open-heart surgery to replace the faulty valve. But patients who weren’t good candidates for open-heart surgery — such as those who were too frail to endure having their chest opened up and having the valves replaced — faced a grim outlook.
“With the introduction of less invasive measures, and the various imaging technologies available, doctors are more aware of [the disease],” Dr. Mehran says. “They’re examining the patient more closely and looking for symptoms that they wouldn’t have been able to see before.”
Not only has technology improved the ability to diagnose heart valve disease, but it has also revolutionized how it can be treated.The introduction of the transcatheter aortic valve replacement, or TAVR, proved to be a game-changer. This procedure is less invasive than open-heart surgery and uses a catheter to put a new valve inside the diseased one.
The catheter is typically inserted into a small incision in the leg to deliver the valve. It usually takes two hours or less, and patients go home in as little as three days — much faster than the recovery time required for open-heart surgery.
When it was first introduced, TAVR was reserved for only the sickest of patients; in fact, patients had to prove they were too sick for open-heart surgery to qualify for the procedure. In October 2012, the FDA approved the device for use in high-risk patients, and in August 2016, the FDA expanded that approval to include intermediate-risk patients. e SAPIEN Valve, made by Edwards Lifesciences, is presently the only FDA- approved therapy for TAVR in the U.S.
“The technology is complex, but the process for the patient is much simpler,” says Dr. Mehran. “I’ve seen patients go home the next day. This is a tremendous, important breakthrough that we never could have imagined in the past.”
Haffner, who had already undergone two bypass surgeries by the time his aortic stenosis was diagnosed, wanted to avoid yet another open-heart surgery.
“I started reading about TAVR, and by 2014, my aortic stenosis started getting severe,” says Ha ner, who lives in the St. Louis area. “When I went back to the doctor and he said we had to replace the valve, we both said ‘TAVR’ at about the same time.”
The problem was that Haffner didn’t qualify for the procedure; he was 63 years old, and at that time, the average age of patients receiving the valves was around 85.
“Fortunately, Edwards Lifesciences was doing its Partner II study, which looked at intermediate-risk patients like me, and I was able to get it done.” Not only was he out of the hospital in just three days, but he immediately resumed his life — with the added bonus of good health.
His experience with Mended Hearts when he was a patient led him to become active in advocacy efforts. He has become increasingly involved with the organization and frequently talks to other patients about his experiences.
“I felt great,” he says. “The change is literally overnight. It’s remarkable. I immediately went back to exercising and I still do. Since then, my valve has functioned great, and I’ve met a lot of other people who have had the same experience. It amazes me.”
Adding to TAVR’s appeal for younger patients like Haffner is the fact that the procedure can be repeated and a second valve can be inserted if the first replacement valve begins to fail again after several years.
“These days, the things they can do are so vastly improved,” he says. “Something like aortic stenosis doesn’t go away, and there’s nothing they can do pharmacologically to treat it — so it’s important to know there’s a solution like this out there.”
These solutions didn’t exist when Bill Voerster had open-heart surgery in 2006. Voerster, who is now the Assistant Regional Director for Mended Hearts’ Mid-Atlantic Region, suffered a heart attack on the day he was scheduled to take a stress test to check his heart function. In addition to discovering he had three blocked arteries, tests revealed he had aortic stenosis. Within just a few days, he had bypass surgery for the blocked arteries, and the surgeon also replaced the valve.
The surgery made a “150% difference in my life,” says Voerster, now 84, but he also credits the support of Mended Hearts, and following his doctor’s orders, with his new and improved life.
Today, in his work with Mended Hearts, he talks to many patients who are facing valve replacement and helps them address their fears.
“What they are doing with TAVR is amazing,” Voerster says. “The recovery is three times faster, and they are doing it in younger and younger people. The procedures they have today are fantastic, and people just need to know the new ways they’re treating valve replacement are nothing like it used to be.”
Dr. Mehran of Mount Sinai Hospital agrees. “For those patients who are lucky enough to be alive and have seen the advancements being made, this is an exciting time,” she says. “We’ll continue testing the waters and refining the technology. This will only improve.”
While the majority of heart disease occurs in older adults, a small segment of the population — about one in every 110 babies — is born with congenital heart disease. Of those patients, heart valve disease comprises “a fair bit of that,” says Evan Zahn, M.D., Co-Director of the Congenital Heart Program and Director of the Division of Pediatric Cardiology at Cedars-Sinai Medical Center.
“The difference in children and adults is mainly that they have far more years of life ahead of them,” he says. “There’s not a valve that exists today that will last 90 years, so it’s going to require multiple valve-replacement procedures throughout their lifetime.”
The transcatheter option means that young patients can have fewer invasive surgeries over their lifetimes. And that can be a priceless gift for both the patient and their family.
“To be able to have the procedure done in such a short time and be able to go back to school, back to cheerleading, made it so much easier,” says Shari Bethel, whose daughter, Kaitlyn, was born with congenital heart disease. Kaitlyn had her first open-heart surgery when she was just 11 days old and her second one at the age of five. When she was 13, her cardiologist presented the option of inserting the Melody transcatheter pulmonary valve instead of going through another open-heart surgery.
“I’m so grateful for this option,” says Bethel, who lives in Michigan. “To have to take a child out of school for a month to recover — that affects everything. It affects her physically, educationally, emotionally. But with this, she had the surgery on a Thursday and was home the next day.”
Katilyn is now 15, and her family and their doctor anticipate the Melody valve will last at least another four years.
“What a gift that is for my daughter,” Bethel says. “And when that one needs to be replaced, they can put another [valve] inside it instead of doing open-heart surgery. And by then, who knows what technology will be available?”
Dr. Zahn says that the older the child, the greater the number of options for procedures. The option of transcatheter valve replacement has minimized risk and lowered morbidity rates.
“Any time you can increase the amount of time between surgeries, you’re improving the patient’s quality of life,” he says.
And Dr. Dennis Kim, Director of the Cardiac Catheterization Labs at Children’s Healthcare of Atlanta Sibley Heart Center Cardiology and Associate Professor at Emory University, says extending time between surgeries is vital.
“Transcatheter procedures for children aren’t meant to replace surgery, they’re meant to extend times between operations. Children and infants grow up, and their valves grow with them. So a valve that is surgically placed in someone who is two or three years old won’t be suitable down the road when they’re much bigger.”
While one of the greatest barriers to receiving the procedure right now is that not all doctors are qualified to perform it, or don’t understand its benefits, Dr. Kim says that is changing.
“More and more doctors are becoming educated, and advocacy groups like Mended Hearts are playing a big part in that. These days, it’s rare for a doctor not to be aware of the procedure, even if they don’t know how to perform it.”
As technology progresses and the implantation process becomes simpler, Dr. Kim predicts the procedure will become even safer, while at the same time valve durability will improve.
Included with this issue of Heartbeat is the GoToGuide on Valve Disease.
Be sure to check it out. And go to www.MendedHearts.org to download and share an electronic version of this guide that has videos, interactive quizzes and other handy tools to help you manage valve disease.