Patient Perspectives: A Discussion With Hanna Heuser and Tenly Tibert

In this feature interview, EP Lab Digest^® speaks with Hanna Heuser and Tenly Tibert, who both work in the cardiovascular medical device field as clinical specialists for Medtronic, and both have ICDs. Hanna and Tenly are also from Colorado and attended the Arrhythmia Technologies Institute (ATI). Here they share their experience as device patients working in the cardiac electrophysiology field. 

Tenly, describe your medical background. When did you first start having cardiac symptoms? 

Tenly: Since the age of ten, I played competitive soccer; however, I later started to feel dizzy when I would run. My doctors couldn’t figure out what was going on, but attributed it to me playing at such a high level and figured I was just overexerting myself. 

My mom was actually the one who pressed the issue more since my symptoms seemed to be getting worse; she had also experienced a tachycardia when she was growing up, so she asked my doctors if I could potentially be experiencing something similar. They told her they didn’t think it was related to that, but did an EKG just in case. The EKG came back abnormal, and at that point I was diagnosed with long QT syndrome. They also later did an echo and found I had hypertrophic cardiomyopathy (HCM). This all happened in 2002 during my junior year in high school, and I had never had any issues before that. I had always been the perfect picture of health. 

Did you subsequently have family members tested for the gene?

Tenly: After finding out I had the gene for both long QT and HCM, everyone in my direct family was tested with an EKG and echo, and fortunately, all those tests came back normal. Some of my cousins, aunts, and uncles were also tested, but no one came back presenting with any issues, so they thought my situation was sporadic in both cases. However, my little brother just recently ended up having the same tachycardia that my mom had, so he underwent an ablation. He also later underwent genetic testing and came back positive for long QT. 

Hanna, tell us about your medical background and when you first started having cardiac symptoms.

Hanna:  Well, I started long-distance running in first grade while growing up in Colorado. I loved to run, it was one of my passions and it was therapeutic for me. I continued my athletic endeavors throughout high school, and when I went to college in Pennsylvania, my goal was to run a marathon. Like Tenly, I was the picture of health — I exercised, ate healthy, and didn’t have any symptoms or anything related to cardiac problems. Then, on October 11th, 2009, while training for the Marine Corps Marathon, I had a cardiac arrest during a recovery run. I was incredibly fortunate, though — I was in Gettysburg National Park at the time and had been running with a friend. He flagged down a nearby tourist who happened to be a CPR instructor and who had paddles in the back of her car, so I was really very lucky (my doctors remind me of my luck often!). She quickly started CPR, and the next thing I knew, I was at York Hospital in Pennsylvania. It was a very scary time for my family, I think, as it was pretty uncertain whether or not I would wake up again. I was put in a hypothermic coma to prevent any sort of brain damage. I luckily woke up a few days later without brain damage, but my doctors were still very concerned about my arrhythmia. A few days later, I had an ICD inserted, and that was my introduction to my health issues, as well as to the cardiac rhythm device industry.  Since getting my ICD, I’ve had some VT episodes and have been shocked three times. I’ve also had three ablations, but they haven’t gotten rid of everything.   

Do your doctors know what caused your sudden cardiac arrest?

Hanna: There is no real diagnosis right now, but they do know how to control it. My VT is induced by exercise, so I have to be very careful — I always exercise with a heart rate monitor now. 

Tenly, did you have an experience with sudden cardiac arrest as well? 

Tenly: No I didn’t, and that is where Hanna and I are very different. My ICD was implanted more as an insurance policy, and fortunately I have not had any issues. I haven’t been shocked and have never had a cardiac arrest.   

Tenly, are you still able to exercise with your ICD? 

Tenly: Yes, and again, my experience has been very different than Hanna’s. I didn’t get my ICD for a full year after being diagnosed. After my diagnosis I was told by my doctors to limit my activities to walking or yoga — activities where my heart rate would not get too high. I had gone from working out six times a week playing competitive soccer — I had planned on playing soccer in college and had just started talking to different schools — to being told I could only do very mild activity, which proved to be a very hard adjustment for me. I actually started sneaking out of the house and working out by myself, and of course my parents weren’t very comfortable with that! This led to a conversation with my doctor, and after a long decision process, I decided to get an ICD so I could be more physically active and so my family would feel more comfortable with me being active again.   

Hanna: The hardest part for me was definitely having to give up running. Now I go “wogging” (a combination of walking/jogging), and I am definitely envious of Tenly because she is still active. It was extremely difficult having to take my exercise back quite a bit, because I was a marathon runner and I really had a passion for long-distance running. I think that is the most difficult part for any young patient — even Tenly will tell you — when a doctor says that you can’t do what normal people your age are doing, it’s heartbreaking. That was huge for me, and very hard to deal with. It was something that I had to cope with over time. It still can be a bit of a struggle, and has taken me a few years to really understand the extent of my condition, and try to work with it. Overall, I have found that it’s good if you have doctors that will work with you and make you comfortable performing activities that you want to do and to live a normal life. 

Tenly: Being diagnosed at such a young age, I felt like I lost a piece of my identity because everyone knew me as a soccer player. The soccer field was where I spent all my free time and where I met and hung out with all my closest friends. It was weird not going to practice during the week and not having games on the weekend. I did not know what to do with all my free time, and though I was happy for my friends, it was difficult to see them get scholarships to play college soccer. It might sound dramatic, but in a sense, I had to redefine who I was. 

What have been some of the other main adjustments in having an ICD?

Hanna: One of the main adjustments was definitely with my identity — I had always been an active long-distance runner and now I couldn’t be, so that was difficult. I kept thinking that I would one day be able to run a marathon again, but that goal of mine slowly faded away. Also, since I was in college at the time I got my ICD, my peers tried to be super careful with me, and to be honest, it almost annoyed me because I wanted to be treated like everyone else! I also had to get used to all the doctors’ appointments that I was now going to — a lot of times I was nervous because I didn’t understand what was going on, especially at the beginning. Doctors were talking about things that went way above my head, and it was frustrating because I didn’t fully understand my boundaries with exercising as well as returning to a normal life. I didn’t know what to expect a shock to feel like until I experienced one, and that was awful. It’s all a completely different lifestyle — once I got the ICD, it becomes a huge part of your life. It doesn’t fully identify me ever, but it does become part of who you are, so that is something to get used to as well. For example, I loved coffee back in the day but now I don’t drink it — it’s those little changes that my friends will pick up on. For the most part it’s an adjustment in the sense that you learn to become balanced in everything — I try not to become too stressed, and to exercise or eat too much. It’s a balancing act that I have to master in order to prevent arrhythmias and be healthy. Overall I honestly think that having an ICD has been a positive experience, despite getting shocked. Not only has it saved my life, but this is the healthiest I’ve ever been, and it’s because I try really hard to become a balanced individual. 

Tenly: For me, the diagnosis was harder to accept and a bigger adjustment than actually getting the ICD. Getting the ICD allowed me to get back my active lifestyle, and gave my family and doctor comfort in allowing me to do the things I love. I may have never been able to play soccer in college, but I play on a women’s league now, I can still snowboard, wakeboard, work out and run… I can still do all the things that I have always loved to do. One of the hardest parts for me is knowing that my conditions are genetic, and the possibility of passing that on to my kids is really difficult to deal with.  

Tell us about your positions at Medtronic. It must be interesting to work with other patients. Do they often know about your background? 

Tenly: Although Hanna just started and is still in training, I’ve been working at Medtronic for about two years now, and we are both in the Clinical Specialist role, so our focus is more on the patient — providing support in the field and checking the patients after they have been implanted with their device, and also helping by passing off the product and testing the wires. However, working with other patients has definitely been the best part of it, and although it’s dependent on the situation, I have told quite a few patients about my ICD and have had a couple of pretty meaningful and impactful conversations in which I’ve been able to connect with a certain patient about one thing or another. There was one patient in particular who had experienced a cardiac arrest and was in her mid 40s or early 50s, and who refused to get a device. I had a doctor call me and ask if I’d be willing to sit down and have a conversation with the patient. I spent probably an hour with her by herself, and then probably another hour with her and her family, during which I was able to share my experience. Being a female, one of the things she was most concerned about was what the device would look like after implantation. I was able to show her my scar and show her where my device was. She ended up agreeing to get a device, and we implanted the following day. She was so happy, and I felt like that experience was the exact reason why I wanted to do what I’m doing. 

Hanna: I feel the same way. During my time at ATI, I encountered an older female patient with an ICD who started to cry when asking me what was going to happen if she was driving and got a shock, or if she was out in the middle of nowhere during an ICD shock, if someone would find her. It just made me think that some people would tell these patients “You will be fine” and “You will be shocked out of it, so it’s not a big deal”, but it is a big deal to get shocked! It hurts, and there is some psychological trauma associated with it. It’s really a scary thing, so I think if anything, Tenly and I being patients is helpful because we understand. I’ve been there in that office crying and saying I’m nervous about getting a shock and asking what will help. I think the fact that we can both say we have devices and we know this fear that they have does create a huge connection with the patient. It’s almost like they trust you a little bit more, I don’t know how to describe it. So I did tell that particular patient, if you fall in the middle of the street, make sure you have a medical alert so people can identify you. It’s those little things that I feel like only fellow patients can understand. It’s all a part of the patient-to-patient relationship. 

What about your colleagues in the field? What have their reactions been like? Do many people know about your personal stories?

Tenly: It’s not one of the first things I told people when I was hired, but there is a good majority of people, and certainly the people I work closely with know I have a device. I think their knowing has helped in some ways, because there are situations where it has been helpful for somebody to have a patient’s perspective. In terms of doctors, I’ve shared this information with certain EPs, and there may be certain situations in which I share it, but again, it’s not something that I go straight to when introducing myself. 

Hanna: It’s the same with me. It’s not the first thing I say, but I do have a scar, so sometimes sometimes people will notice it and ask about it. Since I’m new at my company, only my manager and Tenly and a couple of other people on my team know. Although I haven’t had the opportunity to form working relationships with doctors yet, I would imagine my story is something that they might find of interest. 

Did your personal medical background play a role in pursuing a career in the cardiovascular medical device field?

Tenly: Yes, there is no way I would have thought to do this otherwise. However, I do, ironically, have an uncle who works in this field. I had worked in a different industry before starting with Medtronic, but didn’t like sitting behind a desk all day and was trying to figure out how to add purpose to my career. My uncle suggested I consider doing something in this field, thinking the personal connection of having a device and sharing that experience with other patients might add to the fulfillment I was looking for.

Hanna: My introduction to this field was getting my ICD, but Tenly was actually the reason why I wanted to be a Clinical Specialist for CRDM devices. She is only about four years older than me, and we’re from the same hometown in Colorado Springs. When I got my ICD, my family flew out to Pennsylvania to be with me and help me recover. My dad was especially worried about me, and wanted to know what life would be like for a daughter who had an ICD. He remembered that he had a friend from Colorado Springs (who happened to be Tenly’s dad), who also had a daughter with an ICD, so he reached out to him. Tenly’s dad told my dad about her experience with the device, as well as her current job at Medtronic. That immediately sparked my interest in all of this and was why I went to pacemaker school at ATI — because she had gone there! Basically, I followed in her footsteps without her really knowing, and we’re working together now! So that is why I really got into the job I’m in now — she was my inspiration.

Thanks Hanna and Tenly! 

If you know someone who might like share their story with EP Lab Digest^®, please contact the editor at jelrod@hmpcommunications.com.
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