Surgeon Q&A: Stress Tests & Watchful Waiting
Written By: Allison DeMajistre, BSN, RN, CCRN
Medical Expert: Douglas R. Johnston, MD, Chief of Cardiac Surgery, Northwestern Medicine
Reviewed By: Adam Pick, Patient Advocate
Published: November 7, 2023
We just received a great question from Nikki about watchful waiting, stress tests and the progression of heart valve disease. In her email, Nikki asks, “My 16-year-old son has a bicuspid aortic valve with severe aortic stenosis. He experiences chest pain. He is currently in what they call ‘watchful waiting.’ Is a stress test the best and most accurate method to determine when surgery is necessary to replace the valve?”
To provide Nikki an expert response, we were lucky to interview Dr. Doug Johnston,the Chief of Cardiac Surgery at Northwestern Medicine in Chicago, Illinois. During his extraordinary career, Dr. Johnston has performed over 3,000 heart valve operations.
Learnings About Watchful Waiting & Stress Tests
Many patients are in the ‘watchful waiting limbo:
- Before addressing Nikki’s son’s case, Dr. Johnston wanted to point out that stress tests can be beneficial in determining how the heart is doing. “There’s very good data to say if your stress test is positive, you’ll do worse, and if your stress test is negative, your heart will be okay for a little while,” Dr. Johnston said.
- However, Dr. Johnston would want more information to answer Nikki’s question. “In your son’s case,” he said. “It sounds like he has symptoms, and I would want to know a lot more about the echocardiogram because if you already have chest pain, a stress test may not be the right study. There is some risk to doing a stress test with somebody already symptomatic from aortic stenosis.” Getting the heart team involved, talking with a surgeon and cardiologist, and even getting a second opinion, according to Dr. Johnston, is the best way to figure out where her son is on the spectrum of disease. “It may be time to think about an intervention if he’s symptomatic, so this is a time to spread the net wide and talk to a lot of different people.”
The challenges for young patients and their parents when thinking about lifetime management of heart disease:
- Dr. Johnston has extensive experience working with young patients who have aortic valve disease. “In the 16-year-old age range, with few exceptions, the best option is probably going to be a Ross operation,” Dr. Johnston said. “It’s a little scary for people to hear how complex that procedure is, but there’s very good data from our center and others on the safety of this kind of operation, especially in this age group.” Dr. Johnston also said the Ross operation is not only an excellent option for younger patients like Nikki’s son but also for patients in their 40s and 50s. “It’s very consistent with normal lifestyle and activity,” he said.
- “We don’t want to commit your son to something that is going to be lifestyle-limiting at age 16,” he said. Dr. Johnston believes there are many options, but finding a center or a surgeon familiar with the Ross operation to get an opinion is a great place to start. “Even if they say, ‘Hey, we can wait. You’re not ready,’ at least you’ll know more about the surgical options,” he said.
Adam’s amazing aortic and pulmonary valves:
- For those in the community who didn’t know, Adam Pick, the patient who started HeartValveSurgery.com, had a Ross procedure in 2006. Since then, Adam has not had any issues with either his aortic or pulmonary valves which were replaced during the operation. The last time Adam had an echocardiogram, his cardiologist said, “This is amazing! Your aortic valve looks perfect!”
Thanks Dr. Johnston and Northwestern Medicine!
On behalf of Nikki and our community, many thanks to Dr. Doug Johnston for sharing his wisdom and insight about watchful waiting, stress tests, and the Ross operation for young heart valve patients. Also, we want to thank Northwestern Medicine for taking great care of our heart valve patients!
- Echocardiogram Uses For Heart Valve Disease Diagnosis
- Patient Webinar: Lifetime Management of Heart Valve Disease with Dr. Douglas Johnston
Keep on tickin!
P.S. For the deaf and hard of hearing members of our community, I have provided a written transcript of this interview below.
Adam Pick: Hi, everybody. It’s Adam with heartvalvesurgery.com, and we are at the Mitral Conclave in New York City, and I’m thrilled to be with Dr. Doug Johnston who is the chief of cardiac surgery at Northwestern Medicine in Chicago, Illinois. Dr. Johnston, thanks so much for being with us.
Dr. Johnston: Great to be here, Adam.
Adam Pick: Dr. Johnston, we’re here seeing all these presentations, research, learning a lot. At the same time, we’re getting patient questions from all the wonderful people in our community, and one came in from Nikki all about this topic of watchful waiting. She says, “My son has a bicuspid aortic valve with severe aortic stenosis. He experiences chest pain. He is currently in what they call ‘watchful waiting’. Is a stress test the best and most accurate method to determine when surgery is necessary to replace the valve?”
Dr. Johnston: Nikki, I would say that is a great question, and your son is in this limbo that a lot of patients are in, this watchful waiting stage. Let’s back it up one second and take it away from this individual case and talk about a stress test. A stress test is probably a very underutilized study to look at valve disease in the asymptomatic phase, so patients whose valves are getting worse. They may have just gotten in the severe range if you look at the report and it says “severe aortic stenosis” as your son has, and we’re trying to say is this somebody who’s got a well-compensated heart, they’re doing fine, they can wait a little while or is this somebody who experiences symptoms with stress or has changes on their echo or their EKG that suggests that the heart is suffering from the valve for lack of a better word.
A stress test can be very helpful, and there’s very good data to say that if your stress test is positive, you do worse, and if your stress test is negative, it’s probably okay to wait for a little while. Bringing it back to your son’s case, it sounds to me like he has symptoms, and I would want to know a lot more about the echo and exactly how he’s doing, but most people would say that if you already have chest pain, maybe a stress test is not the right study to get. There is some risk to doing a stress in somebody who’s already symptomatic from their aortic stenosis. This is a good time to get the heart team involved, to talk with a surgeon, cardiologist, maybe get a second opinion and really figure out where he is on the spectrum of the disease. It may be time to think about an intervention if he’s symptomatic, so this is a time to really spread the net wide, talk to a lot of different people and see where we are.
Adam Pick: Yeah, so Dr. Johnston, you do a lot of work with aortic valve patients in particular that are young patients, right? How important is it for Nikki as she’s watching out for her son to start thinking about if a procedure is needed in the future, what are her options for the lifetime management for her 16-year-old son if surgery’s in the near future because it’s a big challenge for patients and their parents.
Dr. Johnston: It’s a big one. In the 16-year-old age range with few exceptions the best option is probably going to be a Ross operation. It’s a little scary for people to hear how complex that procedure is, but there’s very good data now from our center and others on the safety of this kind of operation in especially this age group, so patients who still have growth potential or are young adults or now we know even what I would think of as a young adult – I feel like I’m young – people in their 40s and 50s who have decades of life ahead of them, so the Ross can be a great option in that age group.
It’s very consistent with normal lifestyle and activity and all those things. We don’t want to commit your son to something that is going to be lifestyle limiting at age 16. There are a lot of options out there, but I think that for a young patient, it’s never a wrong thing to seek out a center or a surgeon who is familiar with and has good outcomes with the Ross and start to get an opinion. Even if they say, “Hey, we can wait. You’re not ready,” at least you’ll know more about the surgical options.
Adam Pick: Yeah, and funny you mention the Ross procedure, Dr. Johnston, because I’m now on my nearly 18 years of having had a Ross procedure with no interventions. The last time I had an echo my cardiologist says this is amazing. Your aortic valve still looks perfect, and I know at Northwestern, you and your team are doing the Ross procedure, and so on behalf of Nikki, the patients, and all the people at heartvalvesurgery.com, thanks for being with us today and doing all the great work you’re doing at Northwestern Medicine in Chicago.
Dr. Johnston: Thanks, Adam, and good luck to Nikki and your son.