Dennis-Ann-Dobkowski

When Dennis Dobkowski learned he’d need open-heart surgery to replace his heart valve, he began a difficult journey to prepare for surgery and work through a long, sometimes uneven recovery. For his wife Ann, a retired nurse, recovery meant a course of clinical steps.

Both the patient and caregiver from Yorba Linda, California, now both Heart Valve Patient Ambassadorsfor the American Heart Association, had much to learn about coping, both physically and emotionally.

For a decade, Dobkowski’s heart murmur posed few issues, requiring an extra conversation with the doctor each year, which always ended with assurances there was nothing to worry about. The condition, caused by mitral valve prolapse, is harmless in most cases, and many people who have it don’t experience any symptoms.

In July 2014, a routine echocardiogram indicated the impact from the murmur had grown, and the valve would require surgery in a year or two. Four months later, Dobkowski began to experience troubling symptoms. He was exhausted and felt like his heart was fluttering or skipping beats.

The pressure on the valve had significantly increased, and Dobkowski would need a valve replacement as soon as possible.

Surgery was scheduled for January 2015, giving the couple more than a month to prepare.

For Dobkowski, then 67 , the wait was terrifying. He had received little information from his health providers and scoured the Internet looking for insights about the experience from other patients.

“All these things are running through your mind,” he said. “You’re about to walk through a door and you wonder if you’re going to come back out.”

He made contact with one woman who had undergone the procedure and even worked for the company that provides the bovine valves, who offered him some assurance. He also found a blog focused on heart valve replacement that had glowing reviews for surgeon scheduled to perform the procedure.

Ann had a different perspective. She was familiar with the surgeon who would be performing the surgery through her work at the hospital and knew his reputation to be among the best in the region. For her, the assurances her husband received from others, along with what she knew of the doctor, were very comforting.

Dobkowski, however, was still very uneasy. For the couple, it was an early example of how their different roles as patient and caregiver would translate into different perspectives.

“I thought, how doesn’t this make you feel better?,” Ann said, adding she probably came across as cavalier at the time. “I was looking at the statistics and reality of outcomes. His reaction was, ‘It’s not your chest they’re cracking open.’”

Ann thought she was being encouraging, but recognized early it wasn’t helping and tried a different approach.

“I finally said, ‘Obviously, I’m not saying the right thing, please tell me how I can help you,’” she said. “That make a huge difference when I saw that and we did a lot of talking.”

Dobkowski’s surgery went without complications, but recovery proved more difficult than he anticipated. While he had heard of other patients playing tennis a month after surgery, Dobkowski was nowhere close to that level of healing.

“The weeks after surgery, your body is just devastated,” he said. “There were all these things that weren’t working the way that I thought.”

The recovery wasn’t just related to his heart. A type 2 diabetic, Dobkoswki’s blood sugar levels fluctuated wildly, requiring insulin. He also experienced depression and short-term memory loss during the initial months following his surgery, something that caught him by surprise.

“It went away, but it was just another piece of the puzzle that you didn’t expect,” Ann said. “Dennis was shocked he didn’t feel good as rapidly as he thought after talking to other patients and that was extremely discouraging to him.”

Ann was better prepared on what to expect, but had to watch herself from going into “clinical mode,” which she says her husband didn’t always appreciate.

“I had to be very careful about approaching what he needed to be doing and what he felt like he needed to be doing,” she said. “I found I needed to give him more space than I thought so he could recover at his own pace.”

Unable to take anymore time off, Dobkowski returned to work after 6 weeks, initially working part-time as he rebuilt his stamina.

Nine months following his surgery, Dobkowski is still focused on recovery and building up his stamina through light exercise.

“I’m at about 80 percent at this point,” he said. “I can’t go out and play a set of tennis yet, but other than that, I feel extremely good.”

Dobkowski is now a member of the American Heart Association’s Patient Ambassador Program, which works to help others find information and support by sharing personal stories about their experiences.

“I want to make sure people don’t go through what I went through and understand more about what to expect,” he said. “It would take so much of the fear away.”