The Uncertainty of Living with CHD

CHD comes with many unknowns. As patients reach adulthood, things only get a little more gray. It can take a lot to balance between dealing with a chronic illness and living your life. In this week’s blog, one patient shares how the uncertainty of her condition impacts her outlook.

By the time I was a junior in high school, I thought my cardiology appointments were a waste of time. I had gone 16 years without needing this second surgery doctors warned was coming, and I figured since, year after year, nothing changed, nothing would ever change. 

But that summer, after unsuccessfully negotiating with my mom to skip my appointment, it was finally time for another OHS. 

Then I didn’t realize the uncertain road I had been on, the one we travel our whole lives. I couldn’t have imagined needing a pacemaker by 30 and an ICD just two years after that, or the different ways in which each procedure impacted me not only physically, but emotionally. Each year seemed to bring something new, a third surgery, caths, and stents, and the way I took for granted that appointments would always be uneventful went out the window.

I know that I am more fortunate than many. I have made it to 40 in relatively good shape. But as I age, it’s not just the wrinkles that stress me out. It’s the worry about a decrease in function, keeping up with everyone, or being able to take care of myself. Will the day when I can no longer be independent come sooner than expected? Will I be able to work or maintain my healthcare and insurance?  Will I be a burden on my family? 

Some days this sparks a level of panic that I’m not quite sure how to deal with. But most days, I can push past the worry, realizing that I have to live in the present and deal with what is, rather than what could be. So I took that trip to hike in Alaska, I’ve tried every sport, dance at weddings, and I stay in care even if it’s scary.  

My mom taught me that. 

Of course at the beginning, when I was born, everything was uncertain. The course of my care was new and did not meet today’s standards, outcomes varied widely. For my mom, it was seeing what other children experienced in the hospital – feeding tubes, respirators, seizures – she feared those would be in my future too.  When I was sent home with a trach in place, she worried what might happen when she was responsible for keeping my airway clear. 

There were obstacles we faced as a family, hospital stays that ruined plans and holidays, but, as my mom says, we had to do what we had to do and roll with it. Later, once that first surgery was just a memory, the question was what kind of quality of life would I have, what limitations. My doctor explained that I could do any activities I liked, but I’d probably never run a marathon. My mom kept this little mantra in mind whenever I wanted to try something new. Although little league pitchers scared her and watching me struggle to run back and forth down a basketball court was painful, she was determined not to prevent me from enjoying my life. Because what kind of life would it be, if I spent it afraid of what might happen?

So while I don’t know what my future holds, I have to take advantage of today, and keep going, even if more slowly than everyone else.