Part of the Journey: How one heart patient found Mended Hearts in a desire to provide hope

By Jennifer Browning

When Heidi Dohse was 13 she complained to her parents that she would get light headed. Her parents took her to the doctor who determined her problem was a lack of salt in her diet. Heidi continued to feel like something was wrong.

“No one could really find anything wrong,” Heidi said, “so I just felt like no one believed me.”

Mended Hearts member Heidi Dohse is definitely thriving. Photo courtesy of Heidi Dohse.

There were other signs that something wasn’t right. Heidi could never find her pulse.

“In high school P.E. they always tell us to take our pulse,” she said. “I couldn’t count it, I couldn’t figure out how people got that number. Like how to take a pulse because my heart rate was so irregular and I thought it was my own inability to count them.”

Despite having her required yearly physicals because she played sports, Heidi said her arrhythmia was so sporadic that doctors missed it each time.

And then there was another clue that Heidi wasn’t aware was an issue at the time.

“I could feel my heart beat,” she said, “and I didn’t know you weren’t supposed to feel your heart beating all the time.”

When Heidi went to get her wisdom teeth pulled out, her doctor didn’t go through with the procedure because he saw irregularities with her heart.

“I went in to get the wisdom teeth pulled, and they put the monitor on and put me out,” Heidi said. “I wake up from the anesthesia and I thought oh wow this is great! This didn’t even hurt! And I looked at my doctor, and he was white.”

New Mended Hearts member Heidi Dohse with Steve Stanko, Mended Hearts Cath Patient Outreach Chairman at the 2010 Mended Hearts Convention. The two met at the First Timer meeting where new members are paired up with current members. "What I like about this is that it focuses on the hope, the sharing and the helping others and that’s the part I am excited about," Heidi said. "I don’t want to be the disease or the victim, I want to be the provider of hope and compassion and resources and that’s why I like Mended Hearts."Photo by Jennifer Browning.

The doctor saw some arrhythmia issues among other things.

“He panicked, and said ‘we didn’t pull your teeth, we need you to go see and an internist or a cardiologist and tell them that something is going on,’” Heidi said. “My mom immediately took me over to the cardiologist. He put his hand on my wrist, took my pulse for 15 seconds and said I was fine.”

It wasn’t until Heidi went in to have knee surgery in 1982 that someone believed that something wasn’t right with Heidi’s heart. Before going into knee surgery,

“They put me on a little monitor, and by now I knew that when I feel my heart beating that was not a good thing,” she said. “I saw my heart beating, my nurse came in gave me an EKG and brought in the doctor. He told me that I wasn’t having surgery that I was going to the coronary unit. I thought okay, at least somebody believes me now.”

After three days in the coronary unit, she was transferred to University of California-San Francisco Hospital where she spent a month. While there doctors ran numerous tests and tested various drugs on her.

Doctors eventually told her there was nothing else they could do.

“They told me that they had run out of things they could do, and that they didn’t know how long I would live,” Heidi said. “So I quit college and moved to Maui. I thought, well, if I am not going to live very long, then I might as well go to Hawaii!”

A year later, at 19, Heidi’s condition became worse, so she returned to her doctors in California, where they put in her first pacemaker.

“One of the things that it took getting used to was that once I had the pacemaker put in was not feeling my heartbeat,” she said. “And the only way I could tell that it was beating was to take that pulse, but it was really eerie to keep wondering if it was still in there.”

Heidi continued her active lifestyle that involved competitive sports such as adventure racing and mountain biking.

“Then everything was great. I have never considered myself as a heart patient, I just considered myself as someone with a bad electrical system and we fixed it.”

It wasn’t until the leads went bad 20 years later when Heidi was on vacation with her husband in Florida. Heidi’s scar had opened up.

“I call my cardiologist and tell him, hey, my scar is opening up and green goop is coming out. He told me I needed to go find and emergency room and go get IV antibiotics. I was like, ok but we are on vacation for the next four or five days. He said well do that every night. So during the day we would go do things like go to Sea World or to Disney World and at night we would get IVs.”

When I came home to Idaho, the cardiologist asked her to come in for an appointment.

“I thought they were just going to give me more antibiotics and it would fix it, but I went in and they told me I needed emergency surgery.”

Heidi’s leads to her pacemaker had become infected and had to be replaced.

“When the leads had gone bad, that’s when, for me, I turned into a real heart patient.”

Four years after that surgery scar tissue from the surgery had built up, and a virus attacked Heidi’s heart, she eventually suffered from a cardiomyopathy and then heart failure.

“In 2007 I lost a good part of my engine, my heart engine,” Heidi said. “It started off with pain in my shoulders and I had some trouble breathing, so we drove the hour and half to see the cardiologist.”

Heidi ended up in the ICU and had an angiogram

“My arteries ended up looking awesome,” she said. “They thought I had had a heart attack, however it was a virus.”

Heidi began recuperating from the virus and all seemed to be well as her heart function started improving, however the scar tissue build up led to more complications.

“As the scar tissue built up I lost the ability to do things with my upper body,” she said. “Because the veins were blocked the blood couldn’t flow in and it wouldn’t drain out, so I would swell up and it would choke me.”

By Feb 2010 the scar tissue had created such a problem for Heidi that doctors scheduled her for another surgery. Doctors used donor aorta tissue to do a bypass.

After this surgery, Heidi began doing research to find support for heart patients.

“Having open heart surgery is a big deal. I finally had to come to grips with the fact that I was a heart patient,” she said. “And it is kind of a life-changing experience because you can go into something like this and maybe not come out. You have to have some really tough conversations with your family about your wishes.”

Because there had been a complication during Heidi’s previous surgery, she wanted to talk to her family about what had happened.

“We did have a complication [during surgery] that almost killed me,” she said. “Fortunately I pulled through and I am doing great, but I realized bad things can happen when you do open-heart surgery. I wanted to talk to my husband, my family, my mom, my sister and I asked them, what happened to me? I didn’t remember because my memory was wiped out. And no body really wanted to talk about it because it was really scary for them.”

Heidi wanted to find a place where she could talk to other heart patients.

“I wanted to talk to someone just to fill in those missing pieces. Because you just want to talk about it. It is really scary for all the people who care about you to really relive it, so in looking for people who have been through it. People that can have the conversations with it being light hearted and say “yeah, this is what happens” and not have it be a really dramatic thing.”

Heidi discovered Mended Hearts on the internet this past April and felt she had found what she was looking for. Three and a half months after her previous heart surgery, Heidi attended her first Mended Hearts convention.

“I thought this could be a really good fit not only to get that kind of support, here is a room full of heart patients who have been through the same thing, and they get it without it being really scary. I realized I could also share my experience about being a heart patient and give back because there are other people like me who are asking, what happens? What happens on the other side once you are a survivor?”

Heidi lives between Idaho and Las Vegas, and her doctor is still in San Francisco, so Heidi joined Mended Hearts a member at large. This year’s convention was her first Mended Hearts meeting.

Heidi appreciated meeting people who had been through the same thing as well as the information that was provided at the convention. It confirmed that Heidi was where she belonged.

“When I was looking at other organizations, a lot of them focused on the disease. What I like about this is that it focuses on the hope, the sharing and the helping others and that’s the part I am excited about. I don’t want to be the disease or the victim, I want to be the provider of hope and compassion and resources and that’s why I like Mended Hearts.”

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