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EP Perspectives: Interview with Heidi Dohse

Interview by Jodie Elrod

Interview by Jodie Elrod

Heidi Dohse is an endurance cyclist and pacemaker patient whose goal is to provide hope and inspiration to people with heart disease and their families. In this article, she shares her incredible story with us. 

Tell us about first being diagnosed at age 18. When did you receive your first pacemaker implant and ablation? 

At the time I was a competitive skier and professional windsurfer, and I had gone in for knee surgery in between seasons. My first ECG as part of the pre-surgery testing was a life-changing moment: as the strips were coming out of the ECG machine, the nurse’s eyes were getting bigger and bigger, and the next thing you know, she was calling in a cardiologist to look at the results of my test. They immediately cancelled the knee surgery and had me transferred to the Coronary Care Unit. It turns out that 270 bpm is not normal! 

I remember thinking, though, that I still felt like “me” — I had been dealing with whatever was going on inside my heart for my whole life, so I didn’t know any differently. I spent three days in that hospital, and since they still didn’t know what to do with me, I was then transferred to the University of California, San Francisco (UCSF). I spent a month there being evaluated and tested; the doctors at UCSF had not seen anything like the arrhythmia that I was experiencing except in children and babies who didn’t usually survive. So after a month-long adventure of trying to figure out treatment options and seeing that not much was going to be able to be done, I left the hospital and moved to Maui to windsurf. The following year, I was asked if I wanted to participate in an experimental surgery called an AV node ablation. This was 1983, and I was one of the first persons in which Dr. Melvin Scheinman performed the AV ablation. At the time, the procedure was cutting edge — of course, ablation technology has become so much more advanced today. They told me they were going to run a DC current into my body and take out the whole AV node. I remember having an external pacing wire for the first couple of days, and the doctors would come in and turn my heart rate speed up and down, like I was a video game. I later had my first pacemaker implanted, and I’ve now been 100 percent pacemaker dependent for over 30 years, and I’m on my seventh pacemaker. 

What were your feelings about being diagnosed at such a young age? 

It’s interesting — being diagnosed was a relief, although it totally took me by surprise that it was a heart issue. I had been in competitive sports since I was six years old — I was a swimmer, a runner, a soccer player, and a tennis player. During physical education in school, the teacher always asked us to take our pulse during activities, but I could never figure out how to count my pulse. I did not know how the other kids, some who weren’t even active, were able to come up with those numbers. I didn’t know how to tell anyone that I couldn’t count my pulse. I never thought it was a heart issue, though, because I could feel my heart pounding and racing in my chest. I would get really lightheaded sometimes, so I thought it might have more to do with a sort of brain issue. So when I found out I had this arrhythmia, it was scary but also relieving, because now I finally knew why I couldn’t take my pulse all those years and why I was feeling lightheaded. 

It was also really overwhelming as an 18 year old to be asked to have a medical procedure that may or may not work, and that may or may not impact my ability to live the active life that I had enjoyed up to that point. I think the hardest part about that period of time as a post-ablation pacemaker patient was having the blind faith that my pacemaker was going to work. Since I have no other underlying rhythm, I experienced some post-traumatic stress in which I started counting every heartbeat and thinking, is the pacemaker working? We all have times when our heart skips a beat, but most times you don’t even notice it. However, I became hypersensitive to any little blip with my heart, and then my anxiety would build to where my heart was racing. Dealing with that anxiety and fear was very difficult. I had to learn to get past that to find acceptance and trust that the pacemaker was going to work. That is what led me to what I do today, which is bringing awareness about great wearable technologies and mobile devices that we have access to now and can give us a window into what is happening inside our body to help curb the anxiety. If you think you’re feeling a symptom and start to panic, you can for example wear a wrist monitor to know if you’re safe. Personally, if I feel safe then I’m more confident, and if I’m more confident, I’m going to do more. Being positive then becomes the default thought process, instead of feeling fearful and anxious, which can become a self-fulfilling prophecy. 

What did your doctors tell you about exercising? 

My doctors have always been very supportive. Since I had always been active, that is what I think made my heart strong enough to survive and withstand the kind of arrhythmias I was having. When my first pacemaker was implanted, the first thing I did was go windsurfing; however, the pacemaker didn’t speed up and give me the kind of upper limit that I needed to be active. So the first pacemaker lasted only about three months! Fortunately, newer technology has been much better at allowing me to have more active heartbeats instead of just keeping my heart sustained. 

How long have you been a competitive cyclist? Tell us about your solo trip post open-heart surgery in 2010. 

I got into cycling in 2004. I had just had my leads replaced and a new pacemaker implanted, and was watching the Tour de France on TV and thought that cycling would be a good way to test out my new system. I hadn’t yet decided to become a competitive cyclist. I still viewed myself at that time as a girl living with a bad electrical system, and wasn’t necessarily identifying with being a heart patient. In 2006, I experienced heart failure due to an infection that took place during lead replacement — I contracted a viral cardiomyopathy that took out my left ventricle. My ejection fraction was down to about 32 percent. I jokingly now call those the “golf” years, when my husband and I learned to play golf in an effort to stay active. I went on a heart failure medication, which I still take today, but was having some issues because scar tissue from the lead extraction had built up and was blocking my superior vena cava and subclavian blood flow areas. Then in 2010, I learned I needed open-heart surgery, during which doctors would have to essentially rebuild that whole vascular area to improve blood flow. When I found out about the upcoming open-heart surgery, I finally accepted I was now a heart patient. However, I didn’t want to be a victim of heart disease — I wanted to go back to being identified as a competitive athlete like I had always been. I thought about doing a double century (200 miles in a single day) bicycle race, and ended up choosing the 200-mile LoToJa Classic bicycle race from Logan, Utah to Jackson Hole, Wyoming. I started putting together a race team before my open-heart surgery; after I left the hospital, I started training (my first workout was four minutes). I embraced wanting to be known as an endurance cyclist, and I wanted my peer group to be other athletes. I hoped to provide inspiration and show that there are still great things that you can accomplish in life, even if you’re dealing with heart issues. 

As a lifelong heart patient, there has never really been a voice for people like me, so it has been kind of a lonely journey. The way we often culturally identify people with heart disease is by attributing it to lifestyle issues such as smoking, overeating, or lack of exercise. However, if you look at the pink ribbon campaign, cancer is viewed as simply a bad disease that happens to good people. In the cancer community, there is so much inspiration as well as support groups to help these patients get their lives back. Heart disease is the ugly little secret that nobody wants to talk about — the thought is that if you do have it, you probably deserved it because of lifestyle choices. There has never been a supportive community to show you all the amazing things you can still go do as a person living with heart disease. Patients with heart disease include kids born with heart issues and young athletes that never get diagnosed because they’re afraid. There are so many people that are fearful of learning their diagnosis because they immediately assume people will tell them they can’t live a full life. Therefore, I’m trying to change that and show people what is possible by sharing my story. I’m 100 percent pacemaker dependent, I have heart failure, and have had open-heart surgery, but look at all of the cool stuff that I’m out there doing! 

So is that why you founded Tour de Heart? 

Yes, so that is what Tour de Heart (www.tourdeheart.com) is all about — we are educating people on the uses of mobile technologies and apps, and how you can generate data to be able to see inside yourself, be more accountable for what is happening in your body, and use that information to have better conversations with your care team. You can tell them how you’re feeling and have the data points to back it up, or if you’re active like me, you can see how your heart is responding to exercise. Oftentimes with patients, their cardiac symptoms never happen while at the doctor’s office, so testing can be futile. However, with the new mobile technologies and apps, you can create actionable data that you and your doctor can use. Tour de Heart helps empower people to do more and have the information they need.  

What are your favorite types of mobile health technologies, and why? How does data collection empower patients? 

I like wearing the Mio Alpha Watch because it gives me great information on my heart rate. There is also the AliveCor Mobile ECG if I want to do a rhythm strip that I can save and upload to the Health eHeart Study (www.health-eheartstudy.org). The data that I generate is available for my doctors at UCSF and can be used as part of long-term study data on how heart failure is diagnosed and treated, so my data helps me as well as helps empower others in the study. I’m also at a point now as a heart patient where I have 100 percent trust that my pacemaker is doing exactly what it’s supposed to do. I don’t have any issues being pacemaker dependent — I’m actually more focused now on the performance that I get out of my device for cycling and racing. Some of my favorite devices are my training peaks, my power meter, and my heart rate watch — I can take all this data and look at trends in performance enhancements, so that is where I’m mostly using my data. My coach, Cameron Chambers, also finds this data interesting, because as someone who coaches many elite athletes, he can look at my power files and heart rate, and he can see that my system is totally different than a “regular” elite athlete since my heartbeats are manufactured in how they speed up and slow down. In addition, the last time I went in for a pacemaker check, I had a software upgrade. This update on the internal software of my pacemaker fixed and enhanced some things on my upper end, so it has been amazing to have these better heartbeats. Even my coach can see how much more I’m able to do with the upgrade!  

So when is your next race? Do you take any special precautions before a race?

I do not. My next race is the BC Bike Race, which is a seven-day mountain bike stage race covering over 200 miles with 32,195 feet of climbing. Mt. Everest is only 29,029 feet high, so it will be a big week! The race starts in Vancouver, Canada and ends in Whistler, Canada.  I’ll be racing for anywhere from 5-8 hours per day through some of the most beautiful scenery on the planet. But it will be tough. When preparing for a race, I make sure I have the proper hydration and nutrition. However, one of the funniest things that I had somebody ask me was, do you also just swallow a handful of watch batteries to keep your pacemaker going? That made me laugh! For me, the really amazing thing is how little my race preparation has to do with being a heart patient. It’s kind of like anything else — I need to make sure I have the right type of electrolytes in my hydration and that my nutrition is good so that I can keep going for that many hours. There are only a few times I need to take extra precautions for my pacemaker. For example, this year I have some enduro races, which is mountain biking downhill as fast as you can over rocks and jumps. If I were to crash into a rock and rupture the pacemaker can, that would be bad. But I try to stay within my parameters, and I know what my upper limit is when I’m out there peddling. I don’t want to go too much over 175 bpm, so I watch out for things like that. 

I’m still trying to imagine mountain biking downhill over rocks and jumps at a very fast speed! I think it’s so great that you’ve always lived life to the fullest and that nothing seems to hold you back.

I think it would have been so easy to become overwhelmed, sit on the couch, and be afraid. Quite frankly, that is the easier way to go. It’s hard to get yourself back in that ‘anything is possible’ thought process. That is where I find that heart patients helping heart patients is so valuable, because no one understands that like somebody who has been there before. No matter how much our parents and our families love us, it’s frightening for them to talk about what it was like to have your sternum sawed open. They just want to be able to move on. Doctors are generally more concerned with the diagnosis, treatment, and measurable outcome that equals success, but for the patient, this is the beginning of the rest of their life, and that is hard to define. Being able to talk with other patients is incredibly valuable, because we’re all on a different journey — sometimes we’re mentoring others, and sometimes we’re learning from someone who has been there before.

What other resources are available for athletes with heart disease? 

If I have my way, we will have a lot more! It’s a very niche market, but I’m finding some great grassroots organizations. People are also finding one another on Facebook; for example, I’m in a group for athletes with congenital heart disease. We talk about our pacemaker settings and how that is working for us. As I noted before, the best piece of performance equipment is my pacemaker. 

I see you’re involved with the Health eHeart Study. What can you tell us about this?

Sure, and this is where I’m really excited about being able to make that difference in how we perceive heart disease and what people can accomplish with heart disease. The Health eHeart Alliance is for anyone that wants to join. It’s about building community, changing how research is done, and making research centered on the needs of patients instead of heart research being done or proposed by a drug company or a facility looking at patients as unnamed subjects. If you’re going to have patient-centered care and research, patients need to have a voice and be valued for the wisdom they bring as being experts on dealing with heart disease. The Health eHeart Alliance is creating that environment and putting researchers, doctors, and patients together to do amazing things in treating and diagnosing heart disease. The goal of the Health eHeart Study is to engage, over the next 10 years, one million people (both healthy people and heart patients) who are willing to participate, by filling out their e-visit and wearing any of the heart monitors or apps, and uploading that patient-generated data so that trends can be looked at over time. As an athlete, it’s been so important for me to be able to create both a forum and research around issues specific to athletes, including how athletes get their lives back when they’ve been dealing with heart disease.

How have you gotten involved in events such as the Health & Tech Mashup at the Digital Health Summit? 

I work for Google and my background is actually in technology. For the Digital Health Summit, I was there on behalf of Google as a speaker. My work here at Google is on our Google Cloud Platform, which is an enabling technology that will allow us to create a connected internet of devices — I call it the “internet of me” because of the data I generate from my implantable device and wearable devices. The Google Cloud Platform will be the place for people building applications, studies that need to be done, and even a genomics platform. We have all of this opportunity to take data in, analyze the data, and then make the data actionable for doctors, patients, and researchers. That is what I do for a day job, and it just happens that it works really well with what I’m passionate in as a patient and the work that I’m doing with the Health eHeart Study. 

Do you have plans to continue on with being a speaker and participating in these types of events?

Yes, I will be speaking at a global technology summit soon, and in November I will be a keynote speaker at MEDICA 2015 in Düsseldorf, Germany. The theme will be sports medicine and technology, which is a perfect fit for my story. I’m honestly having the most fun a person can possibly have. I guess I’ve never looked at this whole experience asking, why did this happen to me? I’ve been fortunate to have the attitude that this has been an amazing gift that certainly has changed how I perceive my life. It has opened doors for me, I’ve been able to meet and talk with really great people, and have some incredible experiences.

Thanks Heidi!

For more information, please visit: www.tourdeheart.com and www.health-eheartstudy.org