Waiting Watchfully

At 66, Mark Ridder knows his heart.

As well he should, it has been the source of concern and limitation since he was diagnosed with a heart murmur at age 14. The cause was a congenital heart defect — a bicuspid aortic valve — that would not be identified until he was 42 and not fixed till age 60. But even before his murmur was identified, he had daily interaction with heart disease while growing up in Wichita, Kansas, in the ‘50s and ‘60s.

“I remember going to the circus as a little kid — 3 or 4 years old,” he said, “and we had to park two blocks from the arena. My dad could not walk even a full city block without having to stop, rest and say, ‘You know, I’ve got chest pain. My old ticker doesn’t work like it’s supposed to. I need to rest a little bit before we go in.’” Other kids played catch or roughhoused with their dads; not the Ridder boys. A little brown bottle of nitroglycerin was their father’s constant companion. “Obviously he was having restricted blood flow, angina, and he would pop one of those little white pills under his tongue every time just so he could make it to the next place.”

At a physical before his freshman year of high school, Mark’s family doctor heard something he was concerned about enough that he advised going to a cardiologist. That specialist listened and said, “You have a very loud heart murmur, and that tells us that something isn’t right with the way the blood is flowing through your heart.”

That was in the ’60s, and heart diagnostics weren’t very advanced. “They didn’t do echocardiograms, so diagnosis would have been a heart catheter, which was a very different and riskier procedure in that day,” Mark said. The cardiologist was silent as he pondered. “I remember sitting in the room with all these machines, scared to death, and he just said, ‘I don’t think we’re going to do anything other than just have you watch this. Don’t participate in strenuous sports. Don’t do anything that would really be difficult or hard on your heart, and we’ll just watch this as you grow and mature.’”

Watching and waiting became a common refrain in Mark’s life. He knew he had heart issues, though his teenage mind couldn’t grasp what a murmur was. Every time he went to the doctor, for the flu, for a cut, for a regular checkup, it was always the same: “After listening to my heart, every doctor, no matter where it was, would always cock his head and say, ‘You know, you have a very loud heart murmur.’ But that was the extent of it. From adolescence clear into adulthood, that was where it stood, wait and don’t do anything strenuous.”

Over the next couple of decades, Mark got married and created a fulfilling life for himself working in health care. By age 41, he was in management at a pharmaceutical company and living in Dallas, where he went to the Cooper Clinic for his annual executive physical. He explained to them: “Ever since I can remember, I’ve been going to doctors and they always say I have a heart murmur. Could you, once and for all, tell me what is the problem? Why are they hearing that?”

After that physical in 1993, he received his first clinical workup including his first echocardiogram, and his first clinical diagnosis — bicuspid aortic valve stenosis. And although he had a new diagnosis, his treatment was essentially the same — watchful waiting. “Their recommendation was to see a cardiologist annually and have an echo every few years to monitor the status of the valve function and any progression of the disease, until the valve had to be replaced,” Mark said.

So, he waited and watched, moving about the country as he was promoted, being reminded every couple of years that he had this “heart condition.” The awareness of it was always lurking in the back of his mind. “Even though I had some obvious restrictions on exercise, I was a very active person,” he said. “Certainly, I knew I had a heart issue, but the cardiologists always told me that keeping your heart fit doing reasonable aerobic exercise can actually help, not harm, as long as you don’t overdo it or push so hard that you either harm yourself or somehow make the valve worse than it already is. I jogged. I did reasonable strength training. I cycled.”

Although it took another 20 years, eventually the watchful waiting came to an end in the summer of 2012.

“I’ll never forget that day. I was sitting in the cardiologist’s office thinking it was just another ‘I’ll see you in a year or two’ visit, when the doctor came in and said, ‘We’ve had some progression here since the last echo and it’s time. We’re going to need to replace this valve.’

“I had hoped against hope that I could be one of those fortunate valve patients who lived their entire lives with a bicuspid aortic valve that does not ever progress to the point where it’s so impaired that it has to be replaced. But I was not one of those. I was going to have open-heart surgery. I was devastated.”

Mark had been in the health care industry for many years. He had definite criteria for where he would go for his valve replacement. “I had a lot of exposure to hospitals and doctors, and I knew there are good, better and best,” he said. “I had always thought that if that day comes and I have to have heart surgery, I want to go to a facility that is a teaching hospital, that is rated very highly in the area of valve disease, that does a lot of procedures, not just some in their local community as needed. I wanted a top-flight surgeon who does this regularly, so is very skilled. That’s why I went to Cleveland Clinic. I did my research and decided that’s where I wanted to go.”

He chose a bovine bioprosthetic tissue valve for a replacement rather than a mechanical valve, which requires the lifelong use of blood thinners. His recovery from surgery had ups and downs, and he was surprised at the roller coaster. “I know now the ups and downs are the natural outcome of open-heart surgery,” he said. “It’s a tremendous trauma to your body. The recovery process is variable by patient and by procedure, but you can count on it taking three to six months to get back to a level of activity and capability similar to what you were before.”

“In addition to the physical recovery, there’s an emotional component that I don’t believe is emphasized or talked about enough. I talk to other AHA Heart Valve Ambassadors, and we speak to this a lot because it is something that isn’t discussed very much before surgery. I certainly didn’t have a physician or a clinician take me aside and prepare me for postoperative depression and anxiety, which are very common.”

Mark credits 12 weeks of cardiac rehab as a major contributor to his recovery. Cardiac rehab is a regular program where patients are monitored and advised in terms of their activity so that they return to normal activities without harming themselves.

Mark finishes the 2014 River Run 10K in Wichita, Kansas

Mark finishes the 2014 River Run 10K in Wichita, Kansas

In addition to the huge benefit of monitored physical activity, Mark also credits the emotional support such a cardiac rehab group offers. “It’s kind of a brothers-in-arms situation, an almost immediate patient-to-patient connection,” he said. “When you’re speaking to someone who has been through what you’re going through or have been through, it is a totally different conversation. It’s why I started to volunteer to speak to heart patients, not just heart valve patients, but those who’ve had bypass, those who’ve had heart failure, those who’ve had stents. Regardless of what procedure they have had, we have that connection that we have had heart intervention. No one will ever convince me that when you go into the body and manipulate and change the structure and alter the heart, that there isn’t an emotional change that goes along with it. I can’t give you a clinical study that proves that, but I’m telling you from firsthand experience that it is real.”

At the time we talked with Mark, he was recovering from endocarditis, which is an infection in the lining around the heart. It was not caused by his heart valve, but it is not an unusual development in heart valve recipients. “Once you’ve had an open-heart procedure, you can be more prone to having these kinds of inflammation and infection situations,” he said. “Somehow, and I can’t tell you exactly how, bacteria got into my bloodstream, and that is bad because your bloodstream should be sterile. Once the bacteria get in there, they tend to gravitate towards those areas that are unusual. By that I mean, if you have any kind of an implant: be it a heart valve, a hip replacement, a knee replacement, any man-made object, even a pacemaker. Those bacteria go and form around that appliance and cause an infection. In my case, it ended up being endocarditis, which also got into the discs in my back. I’m still dealing with it and recovering and going for daily IV infusions, through a PICC line for six to eight weeks to eradicate this infection from my system. I’m three weeks into it as we speak.”

Most likely, Mark’s bioprosthetic heart valve will have to be replaced. The manufacturer estimates that his type of valve will last from 12 to 20 years, and his was replaced seven years ago when he was 60. “They keep getting better and I’m very hopeful that I can get 15 or more years out of my valve,” he said. “No one can guarantee or predict; but if you are young enough you will likely wear out a prosthetic tissue valve. I’ve seen patients whose valves lasted only a couple of years, but the company that made mine has patients out there with more than 20 years with tissue valves. So, there’s a wide range of time that these last depending on each individual’s physiology.”

Mark has made some lifestyle changes. “I am much more mindful of diet and exercise,” he said. “I exercise methodically because of my conversations with both the valve maker and cardiologists that the best thing for heart patients is a healthy heart. But it needs to be appropriate. That is why cardiac rehab is so important.

“I am also zealous about my diet because I believe it is one of the most fundamentally important elements of not just heart health but even our attempts to make our valves, even our artificial valves, last as long as possible because it all comes back to heart and vascular health. Diet and exercise are crucial. “

Mark is also an AHA Heart Valve Ambassador. “We speak to each other in conference calls about once every other month,” he said. “We encourage and challenge one another to stay engaged, stay involved, not only in our personal health, but in how we can give back and help other patients. This was my motivation to volunteer in my local cardiac rehab group. I also do television and radio. I am involved in a lot of activities around Heart Walk and a lot of the AHA programs. It gives a much larger sphere of involvement and allows me to do a lot more work with people on the support side across the country — across the world, for that matter. In the program, we help one another with our own personal challenges in our health, but we also challenge one another and learn new ways of impacting the larger community, not just around where we live but really across the country and across the world.”

Mark’s advice: “If I was asked to offer just one piece of advice regarding heart and vascular health, it would be to insist that your doctor listen to your heart every time you have a physical exam or any type of medical treatment. In my case this was how my problem was first picked up, and it allows for prompt diagnosis and proper intervention. Catching a heart problem early can mean the difference between life and death. It’s that important. Do it!”

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.

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