This is my series of interviews with adults and teens living with cardiac issues – mostly congenital heart defects. You are invited to learn more about the individual behind the obnoxiously long Latin medical term and perhaps you will decide to reach out – to an organization that benefits those of us living with CHD, to an individual you were previously too shy to talk with, to a community now that you realize you are not alone, or perhaps to me if you are someone living with CHD and would like to be interviewed.
Question: Can you tell us your name, age, occupation (if you're unemployed just say the occupation you're seeking and if you're a student, say student) and the type of congenital heart defect you were born with.
My name is Alexandra Marie Miller but I go by Alex. I’m 19 years old and I’m a sophomore in college. I was born with a single ventricle, pulmonary stenosis, and transposition of the great vessels.
Question: How many surgeries have you had, if any, and what did they accomplish? How old were you when you had these surgeries?
Alex: I’ve had ten heart surgeries.
1) Blalock-Taussig Shunt, 3 months old. Shunted my blood so it was more oxygenated to tide me over until I was big enough for open heart surgery.
2) Modified Fontan Procedure, 3 years old. Open heart surgery to reroute my circulation so that the blood coming into my veins went straight to my lungs, via a negative pressure system. The blood coming into my left atrium and ventricle was fully oxygenated and could be pumped to my body.
3) Ablation, 13 years old. Tried to correct arrhythmias by burning faulty electrical passages in the heart.
4) Ablation, 13 years old. Attempt #2.
5) Ablation, 14 years old. During this ablation I went in to 3rd degree heart block, causing the need for surgery number:
6) Pacemaker Implantation, 14 years old. Pacemaker was implanted to save my life, less than 24 hours after I went into heart block.
7) Pacemaker Lead Placement, 14 years old. They couldn’t finish everything the first time they were in there, and had the pacemaker attached to my atria but not to my ventricle. Several days later they tried again and still did not attach it.
8 ) Pacemaker Lead Placement, 15 years old. They tried again the next summer for the ventricular lead and succeeded.
9) Pacemaker Lead Placement, 17 years old. I started getting electrical shocks through the left side of my torso during fall of my senior year, and we discovered that this was because one of the pacemaker leads had come undone and was leaking electricity into my body. In October of senior year I had a lead replacement.
10) Pacemaker Lead Placement, 17 years old. Somehow I managed to wiggle that lead loose in less than 2 months, so I had another lead replacement in December of senior year.
Question: What were you parents like when you were a kid living with CHD versus their current attitude? Were/are they overprotective; did they restrict you in any way?
Alex: My parents, in general, treated me as they would have any child. We didn’t avoid talking about my heart; it just wasn’t always the focus. I did things- I played soccer, did ballet, rode my bike, made friends, went to school-just like everyone else. I know and always have known my limits as far as physical activity and endurance go, and my parents have trusted me to make those decisions since I was little. They’ve always let me be a part of decisions about my body, and have given me more and more responsibility over that area as I’ve gotten older.
Question: How did your health issues affect your school life and your social life, as a kid and teen?
Alex: Like I said, I have limited endurance. I couldn’t always do everything the neighborhood kids could, and I couldn’t always participate in gym class. I was teased a lot about walking in gym class in high school when everyone else had to run laps-by that point in my life though, I was mature enough not to let it bother me. The only time I ever really had troubles with being made fun of for scars or for my heart defect was in middle school. Middle school boys are brutal—one kid told me I was mean because I only have half of a heart. A lot of people ask me about my scars, but I don’t mind that. I just tell them. My close friends know all about my heart and my meds, and to them all of that is just part of me. They love me as I am, and accept my heart as part of what makes me me.
Question: How did your heart health affect the relationship with your siblings (if you have any)?
Alex: It didn’t really and still doesn’t affect my relationship with my two younger brothers. They like visiting me in the hospital (free food and fun beds to move up and down). We roughhoused and played like any normal siblings.
Question: Has your health limited you in ways you cannot control/alter? (ex: not being able to go for a particular occupation in life, travel extensively, climb a mountain, etc.)
Alex: I can’t be a welder, or an MRI technician. Or anything else having to do directly with magnets, because of my pacemaker (but that’s quite alright with me). I can’t scuba dive, go in hot tubs, or spend a lot of time in high altitude. My endurance is quite limited, but I played soccer until I was 12 and played in the marching band in high school.
I’ve traveled a lot in the United States, and to Mexico and Honduras several times, and spent 2 months in Honduras my junior year in high school. We have to prepare- find a cardiologist in the area, make sure there’s a place to go if something happens, but I can really do anything I put my mind to. I plan to study abroad next year.
Question: When facing serious health issues, how do you keep from stressing out or dwelling? Do you have a strong support system?
Alex: Sounds cliché, but faith, family and friends get me through.
My family is awesome. We’re very silly, but they are the only people in the world who really understand how to act when I’m in the hospital. My mom and I make hospital visits into chick flick marathons, and a good reason to have dad and the boys bring us food from our favorite places. Sure, spending time in the hospital is yucky, but we’re so used to it that it’s really not a big deal – just Alex spending a couple nights in the hospital. My family deals with me well- when I’m sad they let me cry, but they know when to make me laugh too. I couldn’t ask for a closer, more supportive family.
When I’m stuck in the hospital, it always amazes me how much people care. Family friends, friends from school, people I hardly even know—I get phone calls, emails, and visits from people. My close friends visit me in the hospital and bring me treats, and even just their company is welcomed. My heart isn’t just a big deal when I’m in the hospital, and the people who care about me most understand how to help me in everyday situations when I’m having trouble.
I grew up in church, but my faith really blossomed in 8th grade when I started having more heart problems. No matter how much I love my friends and family, and no matter how much they support me and I depend on them; there’s no way I would have made it to today without God. Having a CHD has truly made me believe in the power of prayer. My church family prays for me regularly, especially when something is going on. They are always the first people to ask how I’m doing and if there’s any progress, and keep me on their prayer lists. Even on my bad days, when I’m discouraged and feeling like the future looks pretty dim, I quickly remember how blessed I am to live where and when I do, with the medical technology of the 21st century and a wonderful group of people surrounding me and loving me. My God and the people who have prayed for me for 19 years are the ones who have gotten me through.
Question: To date, what has been the most frightening moment in regards to your health?
Alex: The first time I had a bad arrhythmia was the first time I was ever really terrified about my health, and I’ll choose it as the worst because it’s certainly the most memorable. I was thirteen, and was rushed to the ER and put into the crash room; which was the room that has everything you would ever need for any emergency, and that was really scary. Just being that young and being in the hospital is scary, let alone with my heart going crazy and me having no idea what was going to happen. There have been plenty of scary heart moments in my life, but a lot of them have been scarier for my parents because they’ve been during surgery (I’ve come out alive every time so far though!).
Question: What are your hobbies and passions? What are your aspirations for your future?
Alex: I love the Spanish language. Spanish is my major- I don’t know what I want to do yet, though. I’m really interested in non-profit organizations and helping people. Also, I have a passion for telling people about congenital heart disease and fundraising to fight it. My dad works for a non-profit that provides free heart surgeries to kids in third world countries, and I can’t wait to go on a trip with him to a Spanish speaking country so I can talk to the kids about their hearts! Besides that, I’m an avid reader, I’m pretty creative and I like to do crafty things, I love being outside and taking walks, and spending time with my friends and family. I recently joined a sorority on my campus, too, so that should be exciting!
As far as my future with my heart health- we have no idea what will happen. As of now we don’t know how many more or what kinds of surgeries I’ll need, or how long I’ll live. At this point, people with hearts like mine are strongly discouraged against becoming pregnant, for my own health and for the babies. But I believe that technology could change in the next ten years, and maybe, one day, I’ll be able to have a baby of my own. If not, I think adoption is one of the most admirable things a person can do, so I’d be okay with that option too.
Question: Having heart issues is what is known as an "invisible disability" Have you had any instances when people just didn't get it and gave you attitude because they couldn't "see" your heart issues?
Alex: Absolutely: teachers, friends, complete strangers—I’ve gotten skeptical looks and comments from many people. I’ve always missed a lot of school with being in the hospital so much, and some teachers are really understanding about it, and others cut me zero slack. Luckily, my mom and I are both strong when it comes to standing up for me, so I usually get those teachers to comply and let me make things up at a reasonable pace. Gym teachers always had to have doctors proof for me not to have to run. I wore a monitor for a few months in middle school, and I had to wear it on my gym uniform, and almost got in trouble for having an iPod until I explained what it was. Sometimes when I have complications or an especially ridiculous amount of maladies at once, people think I’m faking, because what human could possibly have that many things wrong with them? Well, I could. That’s the most frustrating, because on top of dealing with being sick, I have to defend myself because people think I’m faking.
Question: What has been the toughest part about living with heart health issues?
Alex: Constant, constant, problems, for the last six years. It started in 7th grade, and now I’m a sophomore in college- it hasn’t stopped. One problem gets solved, another appears. I make a record – a whole year without spending a night in the hospital- and then I have a mini stroke. It’s just always something, and sometimes a break would be nice. Don’t get me wrong, I love my life, I have a blast, and my health could be so much worse. I’m very blessed.
Question: Do you consider yourself "different" from your peers due to your experiences living with a congenital heart defect?
Alex: Absolutely. Having a CHD made me mature in many ways, at a much younger age than many kids. Social and physical maturity came with time, just as my peers, but I have always been very strong emotionally. My faith has always been solid, because that’s what I’ve always clung to when there’s nothing else to comfort me; because when it really comes down to it, God is the difference between healthy and unhealthy, not doctors. I’ve always had to worry about more/different things than my peers, which made me mature and more adult-like. There isn’t much that scares me in a hospital, and I’m on more medications than my grandparents. In some ways, I’m mature beyond my years. In others, I’m still growing up alongside my friends. Overall, having a CHD has made a very strong person who knows how to stand up for herself. That’s what I think I’ve benefited from most.
Thank you so much for participating in my series of interviews, Alex!