About a month ago, I was contacted by a young man with HLHS with a great deal of wisdom and a great story to tell. Meet Andrew, HLHS survivor, age 22. He is a college student studying anthropology, enjoys traveling, competitive road cycling, and has a goal to advance patient advocacy in healthcare. Andrew was kind enough to answer what I think are common questions asked by parents of children with HLHS.
Q&A:
How old were you when your parents first explained to you that you had a heart defect? Do you remember what they said?
I don’t remember a time when I didn’t realize that I had something which made me a bit different. My parents must have been pretty open with me as soon as they could. I don’t think I really understood it until maybe around 1st or 2nd grade?
That’s when I started to realize/learn that it was my heart which made me different from other kids I knew. After long, I was separated during rough physical activity, which clued me in some more.
Do you remember if when you were in elementary school or high school you had a hard time keeping up with your peers? How did you handle this?
I kind of ran wild with this in high school. Years of being removed from physical activity let me explore my inner audio-visual nerd. I worked on the high school TV shows, and even ended up getting paid to film, edit, and burn DVDs for school functions and productions.
Since I never was able to keep up with the other kids physically, I did something which let me still interact with them using what I could do. If my friends were doing some activity that I couldn’t, I would film or photograph it. The big ones were team sports, and some really crazy mountain-biking (with lots of hard falls). It was a great way for me to get included in the wacky group-dynamics of high school.
Did you feel different from other kids because you have HLHS?
I definitely did. I never really felt negatively about it though. I was almost proud of it. Perhaps it was the super-liberal atmosphere of where I grew up, where diversity and understanding were championed just about everywhere.
Have you ever been self-conscious about your chest scars?
My scars always bugged me until I was about 16-ish. I'm not sure if this is typical of HLHS patients, but something happened to my sternum after my surgeries and it came to a bit of a point, which splayed my pectoral muscles out to the sides a small amount, and my rib-cage is a bit more visible than on a 'normal' skinny person. I remember one summer when I was still pretty young a Lands End catalog came and they had these lycra swimsuits for kids, styled after wetsuits, which zipped up all the way to my neck, covering your chest. My Mom ordered me one and I lived in that thing whenever I was doing any type of aquatic activity. (Sailing summer camp or an evening on the boat). I felt pretty fancy in it too, how many kids get to wear a wetsuit? Ha.
Before I had the wetsuit (and after I outgrew it) I would always just keep a shirt on in the pool, which wasn't all bad... it saved me a lot of sunburns. I eventually started not to care if people saw my scars and went without. I always had a story handy if someone was going to hassle me about them though. I used it once, and it worked pretty good. It was a school field-trip to a local pool towards the end of the year- and some of the 'cool' kids were picking on my scars and I told them that I got shot and that is where they took the bullets out of my body. I don't recommend it, but it worked to get them to leave it alone!
I think it takes everyone, especially young kids with any kind of physical abnormality a while to accept, and believe the idea that it doesn't really matter what other people think about their body.
How is it to be a young adult with HLHS?
I’d say it’s pretty much the same as being a ‘normal’ young adult. I just have to take medicine, go to my cardiology appointments, and be a bit careful with how I treat my body.
Do you ride on roller coasters?
That was one of the things I was always told I couldn’t do. My cardiologist said in no uncertain terms that I shouldn’t ride roller coasters. I’m perfectly fine with that, I like for my lunch to stay in my stomach anyways. This also included never being in any other no/low/high-gravity situations, but I’m pretty sure I have that covered as long as I stay here on earth...
Do you play sports?
I love cycling. Strangely enough, I didn’t learn to ride a bike until I was around ~12 or so, I suppose that’s a bit later than ‘normal’ but it worked for me. The summer I turned 13 I remember I got a new bike and I loved it. I rode that thing everywhere, all over town. Our community had some really extensive bike paths, which you could ride for about as long as you wanted. I think that summer I hit around 150 miles. I was super proud of that.
Cycling is still my favorite sport, I’m able to out-compete other people my own age, which certainly doesn’t hurt the ego. February of ’10 I got a new bike (bike sales in the winter!) and I think by September I had reached close to 500 miles in total.
Shortly after hitting my 500 mile mark, I was in a really serious accident which put me on a temporary cycling hiatus. I ended up breaking three ribs, and shattering my left kidney to bits. It landed me in the ICU for a week, and bed rest for about a month after. (I had a helmet on, or else I’d probably be dead)
After this, I thought I’d be done with cycling for good and sold all my bikes and anything bike related. It’s more than a year later and I’m still dealing with some pesky stiffness and soreness from that accident, but this summer I did do a little bit of riding. Nothing as serious or as fast as before, just some moderate exercise. I decided that I couldn’t ditch my favorite form of exercise. I think next spring I’ll be back in the saddle and I really want to break my 500 mile mark.
I actually read an article on pubmed awhile ago, (which I cannot find now) about why cycling is a great activity for people with heart issues.
Do you take any heart medications? Do you feel any side effects because of your medications?
I take 10mg of Lisinopril and an 81mg aspirin daily. I don’t seem to notice many side effects unless I miss a dose, if I do miss a day I feel a slight tightness in my chest.
What has your doctor said to you about your heart in the future? Will you need any other surgeries?
My doctors try not to predict the future, which I appreciate. Living with something like HLHS requires you to kind of go with the flow. If a doctor were to tell me “you’ll be fine, you’re fixed!” that would be great, but then if he had to tell me “so...about that...I was wrong” a year later, it would really be a bummer. As it stands now they’ve left open both options; I might need more work, I might not. They’re not sure. They’ve even recently brought up the idea of looking into a full transplant.
I check in twice a year with my cardiologist (or as needed for things which come up) and we go from there. I’ve just recently ‘graduated’ from a pediatric cardiologist to an adult cardiologist. Finally, no more waiting rooms full of coloring books!
What has your doctor said to you about drugs, smoking and alcohol?
My doctors (GP & Cardiologist) both said the same thing. You’re an adult, you can do what you want. With that being said, they both advised me to not partake. I’ve taken their advice. I’m pretty strict about it, I think it’s a personal choice that each person has to make.
I figured, I’ve been lucky enough to be quite healthy for an HLHS patient, I probably shouldn’t mess with it.
*This includes caffeine, which I do not consume in any amount- including what’s naturally found in chocolate or certain teas.
What have you been told about birth control and having children in the future?
I’m not too sure how keen I am on having a child of my own. That might just be the 20-something-year-old male in me speaking though. I have thought about it, and if at some point in my life I’m struck with the desire to be a parent, I’d look into adoption. I do still have some reservations, just simply due to things like the fact that the lifespan of adult HLHS patients is still somewhat unknown.
What are you plans for work in the future? Has your diagnosis ever been a consideration when thinking about a job?
After I finish up my undergrad degree, I want to go to graduate school, and get a masters degree in public health. With that degree I would like to work for some type of organization (or hospital) dealing with patient advocacy. Being a patient my entire life has had a profound impact on my desire to work on this field. I’ve seen the ins and outs of the system as a patient. There are many areas of our system which could be changed to make it easier on patients. Since we have the ability to make most of these changes, it would be silly not to.
What is the most important thing you would like to share with kids about living with HLHS?
You’re not all that different than a ‘normal’ person, don’t let people tell you otherwise.
Thank you Andrew for sharing with us!
