What is life with CHD like post-open heart surgery and as an adult?
Honestly, pretty good (considering). The surgery did wonders, and more than 10 years later I’m still stable with no major changes. I go to the Cleveland Clinic once a year for a check-up with my cardiologist and to get my defibrillator (ICD) device checked. I also have an at-home wireless reader that checks my device while I sleep at night. Throughout high school, nothing really changed. I still couldn’t play sports and I was always slower than the other kids during gym class, but I was alive and well and that was all that mattered.
Here’s a look at one of my EKGs from a visit to the Cleveland Clinic:
I did have one incident early on where my defibrillator actually went off (and by that I mean, it shocked my heart). It was a fluke, only 1 or 2 heart beats had gone up to the level it’s set to go off at, but it was definitely an interesting experience. It was an evening hanging out with friends at my house, when a pillow fight broke out. Sure I was horsing around and my heart rate was elevating, but it definitely wasn’t an activity you would think would set off my device. Out of nowhere… BAM. My defibrillator went off and it was pretty intense. I just wasn’t expecting it, and also had never felt what it would feel like. We did end up piling me and my friends and my mom in the car to take me to the emergency room just in case, but they checked and as I said before it was a fluke so I was able to go home. Luckily, it hasn’t gone off since!
One other interesting thing about having a defibrillator is that I wasn’t allowed to go through any kind of metal detectors (mostly as a precaution), so going to sporting events and the airport became slightly more complicated. I never made too big of a deal out of it though, it was just one more thing I had to do. It was kind of awkward having to get patted down at the airport, but after a few times you just get used to it.
My original defibrillator lasted about 6.5 years (battery life), so I ended up having it replaced in April of 2009. It was a much quicker surgery (I think it was even out-patient surgery) since the lead wires were already in place, they just had to switch out the main device. The new incision was made over my old one (and is a lot thinner). It was actually really nice to get a new device because even in those 6 years, technology had greatly improved. My device was smaller (and therefore less prominent on my chest), and now had wireless capabilities for my at-home device! (I used to have to put this donut-shaped ring over my chest for the device-check to work).
I did have some trouble with the lead wires that connect to my heart, as well. Since my surgery was over 10 years ago, the wires can get old, so there was a period of time more recently where my defibrillator would vibrate every so often to alert me that something wasn’t working properly. We had my defibrillator tested (I was put to sleep and they shocked my heart multiple times) to make sure that the wires could still output enough energy to shock my heart in case it ever needed it, and the wires were working fine so the technician turned off the alert so my device would stop vibrating. I’m actually going in again soon to meet with my device doctor, so we’ll see what happens! Other than those issues though, my cardiologist tells me each year that there are no major changes. I take a beta blocker every day and generally don’t have any issues on a day-to-day basis. I’ve only once done a “stress test” (a couple/few years ago). The exercise electrocardiogram is where you run on a treadmill while getting an electrocardiogram test done to test the stress on your heart. My main issue today is my weight, which brings me to…
Hypertrophic Cardiomyopathy and My Overall Health
Since I wasn’t very athletic growing up, I took an interest in more creative things, like photography, graphic design, and spent probably more time than I should have on the internet. (This led me to my current career though so I have no regrets!). I gradually started to gain weight throughout high school and college (mostly college), and I wasn’t paying attention to the foods I ate or exercising. In high school, I was probably at a fairly healthy weight (though I never felt like I was), but I didn’t start making healthy changes in my diet and exercise routine until the last year or two… so unfortunately I have a lot of work to do to make up for lost time. For me, losing weight is first & foremost about getting healthy for my heart, so as to not have the extra strain on it. My heart already has to work harder, so having extra weight is just making that even worse. The fact that I’ll look better is just an added bonus. I want to FEEL better. The down side is that having my heart condition also makes it harder for me to work out and thus lose the weight, so it’s an uphill battle. I wish I could tell my high school self to start paying attention to my health and nutrition, but hind sight is always 20/20. Now that I am aware, I am determined to get to a healthy weight and live an active lifestyle. In fact, today I start training for my first 10K (where I will be doing a walk/jog mix).
Hypertrophic Cardiomyopathy and The Future
The future… not something most people put a whole lot of thought into (at least not regularly), but when you have a chronic disease, you can’t help but wonder and worry. I worry about my health because I want to live a long, happy life. I worry about if my future children will inherit this disease, I wonder if I’ll even be able to bear children, I wonder what kinds of technological advances will come about. Unfortunately, there’s no telling what can happen as things can change so quickly. It’s best to try to stay as informed as possible, but also not worry too much. Most of these concerns are many years down the road and will be addressed when the time is right. I generally keep a positive outlook on life and feel very grateful.
That about wraps up the personal side of my story! Thank you again (so much) for taking the time to read about my experiences, and I hope you’ll stay tuned for part 3, where I’ll go into more specifics and the technical aspects of HCM and CHD.