Unexpected! Hear Adam Talk About Our New Patient Survey & More on “Bill Martinez Live”
By Adam Pick on August 8, 2020
Unexpected! Many, many, many thanks to Bill Martinez for interviewing me about the findings from our new survey of 3,400 patients and caregivers.
We also talked about the new “Active Living” patient awareness campaign, aortic stenosis (AS), minimally-invasive therapies (like TAVR), and the misconceptions about AS and heart valve surgery. In case you missed it, here is a playback of my interview on the “Bill Martinez Live” show which is nationally-syndicated across 280 cities in the United States.
Keep on tickin!
P.S. For the hearing impaired members of our community, I provided a transcript of my interview on the “Bill Martinez Live” show below.
Bill Martinez: More than five million Americans are diagnosed with heart valve disease every year. A new national heart patient and care giver’s survey is offering some new, exciting findings that you might want to take note of. During a time when fear of COVID-19 has led to unprecedented delays in treatment and care for patients with critical cardiac conditions, these insights are more important than ever, especially when 50% of patients with aortic stenosis do not survive more than two years if left untreated.
This survey also found the need for early treatment during COVID-19. This research shows attitudes and perceptions of more than 3,400 patients from the heartvalvesurgery.com community, the world’s largest educational resource and community of heart valve patients. With us to tell us more about this is Adam Pick. Adam, welcome to the show. Good to have you with us.
Adam Pick: Thank you so much for having me here today to share some information with you and your listeners.
Bill Martinez: I can’t wait. I mean, this is really critical, very important stuff. As you say, in light of COVID-19, let’s talk specifically, the Active Living Survey and Awareness Initiative, what is it?
Adam Pick: Great question, so just so you and your listeners are aware, I’m actually a patient. I struggled with heart valve disease, specifically aortic stenosis. I cannot thank you enough for providing an opportunity to share this information on your platform because it really can be a life saver. That is something that is really important to me. It’s part of our mission as we educate and empower patients at heartvalvesurgery.com.
Let’s talk about the survey. This is something really special. We got together. We had a response of about 3,400 patients and caregivers tell us about their experiences with heart valve disease from the moment they were diagnosed to the moment that they were recovered. The findings were just very interesting. For example, as you may know, heart valve disease is a pretty debilitating disease. You can have symptoms like shortness of breath. You can be tired. You can have leg swelling, chest pain, heart palpitation. That is not fun for anybody.
Oftentimes, that is a sign or taken as a sign of aging because this disease is often associated, as it’s degenerative, with people in their later years of life. What we found in the survey was nearly half of the respondents said, you know something? We’re going to select a treatment option that does what? It gets us our life back. That was really neat to see because what active living is for one patient is not the same as another.
We as patients say hey, you know what? I want to get back to exercising again. Other patients saying, I want to get back to traveling again. Other folks said I just want to be with my family. I just want to live and spend time with them. That was one of the really interesting findings. The other thing is that patients, they didn’t want to wait to get treatment. For example, in looking back over their surgical experience, 27% of patients said, you know something, if I was to do this whole thing again, I would have done it sooner.
Again, it just echoes that whole feeling of give me my life back. Those were some of the other – some of the other findings we found was you hear heart surgery, oof, that’s a big one. That’s scary. Take a guess what the satisfaction rate of heart valve patients were when they thought about their surgical experience. Do you want to take a guess?
Bill Martinez: Gosh, I don’t know what, 50% maybe?
Adam Pick: That’s what I would have thought. It was 80% of patients were extremely satisfied with their surgical result. Then when you – yeah, amazing right? Then when you think about some of these newer technologies, these transcatheter aortic valve replacement (TAVR) therapies in which there is no incision to the chest, no incision to the ribs. You’re not on a heart lung machine. That number went up to 98%. Again, these were just some of the findings that were really encouraging as we decided to go about putting together this active living patient awareness campaign.
Bill Martinez: Adam, as a patient, how did this survey align with your personal story? Tell our audience about that?
Adam Pick: I’ve got to tell you this is an absolute fluke that I’m on the phone with you. If you would have asked me 20 years ago would I be having this conversation with you, the answer would be no, ten years ago, no. I had my procedure done in 2005. I’ve got to tell you, I’ve worked in technology my whole life with hardware companies and software companies. When I got diagnosed with aortic stenosis, I’ve got to tell you it was really difficult. I went through all of the fear, all the uncertainty, all the doubt. That still applied in this survey. I think it was about 64% of patients said the fear of death is still there with them.
As I went through this process of getting treated, when I went through the process of getting fully recovered, what I found was what a lot of these patients have found, which is heart valve surgery can be viewed as just a wonderful reset on your own personal health. It can be a way to say, hey, you know something, I had a bump in the road. These clinicians, these surgeons, these really incredible doctors have been doing this for many, many years. I tend to help patients and help myself through this, realize that this was a huge opportunity often called what I call a second chance. I’m not alone in that.
I decided to go about this process saying, hey, let me help the next patient go through this. Let me pay it forward. That’s why we started heartvalvesurgery.com. It really was. I put up a blog. There was five people coming a month. Then the next thing I knew a few years later we had 50,000 people a month. What I experienced was very similar to what a lot of other patients were. If I knew I could feel better going through this, I would have done it earlier, yeah.
Bill Martinez: Is this sense of that a return to normal, you might say, that I could be normal again?
Adam Pick: That’s another great question. There’s no doubt about it. We go into this hoping can I – the patient mind, actually, is a little different because really if you talk to a lot of patients when they go through this, before being normal they think, I just want to live. I just want to make it through the surgery. I want to wake up. When you go into the recovery and you layer in certain elements of the recovery that can help patients and benefit them like cardiac rehabilitation, I’d submit to you that you cannot only achieve normal, but you can exceed normal.
Just so you’re aware, I have one limitation on me. I’ve gone back to scuba diving. I’ve gone back to surfing. I’ve gone back to running. I’ve gone on to have a wife, a son. There’s one thing my doctor, Dr. Vaughn Starnes at USC said to me. He said, “Adam, you can do all that stuff. Just don’t sky dive.” That was the one thing he said not to do. Is that normal? Considering I didn’t do – I’ve never done that before, I feel pretty darn normal these days, as do many of the patients.
Bill Martinez: Without a doubt. What are the biggest misconceptions about AS?
Adam Pick: AS, also known as aortic stenosis, and what that is is a narrowing of your heart valve. If your valve is narrow, it can’t get blood out of the heart into the rest of the organs of the body. What does the heart have to do? It has to compensate. It works overtime is what they say. In that process, you work anything too hard, a muscle, anything like that, it’s going to fatigue. Eventually, it can wear out.
That’s really what aortic stenosis is. I would say the things I would love everybody in the world to know about AS. First is it’s under-diagnosed. It’s misdiagnosed. It’s under-treated. I saw a survey not too long ago. Only 18% of the population who could be treated do get treated.
Bill Martinez: Adam, I’m running out of time here. We’ve got less than a minute. Real quick, we’re going to put two questions together and put a wrap on this. Quick advice that you’d give to the community to seek treatment and stay in care especially during COVID-19. Again, remind them of where they can go for more information. We’ve got 40 seconds left, go ahead.
Adam Pick: Here’s my advice to patients. Don’t wait. If you need some treatment, need some diagnostic tests done, don’t wait. The reason is your valve disease is not going to wait for COVID to get better. We know structural heart disease leads to damage. Folks have been waiting, and it’s been resulting in health emergencies like stroke and other emergencies.
Where you can get information, real simple. All you have to do is go to heartvalvesurgery.com. If you go to that website, you’ll see a link as you scroll down the page. Click it. We’ve designed an entire website to help you learn more about aortic stenosis, more about heart valve disease, and how and where to get treatment.
Bill Martinez: AS patient and success story, yes, he is alive and very well. Adam Pick, here, on Bill Martinez Live. Adam, thank you so much for sharing, appreciate it.
Adam Pick: Bill, thank you.