Earlier this year I celebrated another trip around the sun. It is my 47th, and while I try not to pay too much attention to the number, I must admit, it’s pretty darn amazing that I’m still here. If my grandfather were still living, he’d be amazed too. Every summer during cookouts or our family reunion, he’d regale guests with stories of me and what a medical miracle I was. Grandfathers are awesome like that, aren’t they?
But I wasn’t always amazed. Much of my 20s and 30s were spent trying to ignore the need to see my cardiologist and acknowledge I had a CHD. In my mind, I had grown up under a microscope, pricked with needles, ogled at, and talked about.
Even while I was raising a family, I did my best to appear normal and healthy. The only time my cardiologist ever saw me was when I was pregnant. And that was at the insistence of my OBGYN.
Unfortunately, for all the normalcy I worked so hard to convey to the outside world, I found myself in congestive heart failure in the spring of 2017.
I can’t turn back the clock on my own health and I must live every day knowing I could’ve done better—but if you feel invincible like I once did, I have some advice I wish someone would’ve shared with me.
You are your own best advocate. I have four children and I’ve always told them whenever there was an issue at school, that there would never be anyone who would advocate for them as hard as I would because no one loved them as fiercely as I did. The problem was, I never really advocated for myself, and I didn’t love myself—especially not with the same kind of intensity that a mother loves her children. Be it emotional or physical needs, I was the worst at speaking up and saying what I wanted or needed. I’m still not that great but I’m learning.
Find the right care team. One of the pitfalls I fell into was seeing whomever the previous doctor referred me to. There’s nothing wrong with going to the referred doctor for an initial visit, but it doesn’t mean you have to stay with them. How can you feel comfortable asking questions and trusting your healthcare to people you don’t even like? I got lumped into the general cardiology population because someone knew of a “good cardiologist.” It was never questioned whether they were the right fit for me. I stayed with too many cardiologists who weren’t right for me because they didn’t know how to properly treat a CHD.
Keep your appointments. It took me too long to accept I needed to go to the doctor, even when I felt fine.
At some point in my life, I began believing I only needed to see a doctor when I didn’t feel well. In 2017, when I found out I was in heart failure, I thought it was due to extreme stress and anxiety. I never considered that there was something wrong with my heart. However, once I started seeing a mental health professional, I learned my reluctance to see the doctor is a trauma response from childhood.
This understanding and shift in my attitude have allowed me to really bond with my current care team. I am always excited to see them, I don’t even hate the stress tests as much as I used to (but please don’t tell them that!).
Do your research. I’m not suggesting you Google every symptom you have but… Once you learn to be your own advocate, you’re able to become a more active participant in your care. And that means knowing when to ask questions. Especially if you were like me, who grew up with scarce knowledge of my specific CHD because it didn’t get talked about enough.
“School House Rock” taught me that knowledge is power and it’s still true to this day. The more you know and understand about your CHD, the better patient you will be, and you can then educate those around you to take away the misunderstandings they may have about your CHD.
*If you are going to research, a good place to start is your own care team. Ask them where you can learn more or what resources they have for you. Believe me, they WANT you to know and understand your CHD.
Find your tribe. Being part of the 1 in 100 movement means there are people out there just like you. Once upon a time, it was difficult to find others like myself. I was the only 10-year-old I knew who had a pacemaker. Not knowing other kids like me made it feel like was alone in the world. It also made it easier to isolate myself from other kids who were considered “healthy.”
Thankfully the Internet exists. I suppose we can thank Mark Zuckerberg too (if we must), for bringing us all a little closer to one another. Facebook is just one of the many social media tools I use to connect to other people like myself. When I’m lamenting about an itchy scar or feeling like my heart is “doing something weird,” I know I can go to my tribe and express these concerns and aggravations. They will either talk me down off the ledge or they’ll agree with me and insist I see the doctor.
In the last five years, I’ve really taken the oxygen mask theory to heart. I now put my own oxygen mask on first by taking care of myself so I can then help others. Now that I am much older (and wiser), I realize I am in a unique position to help the younger CHD community and be a sounding board to physicians eager to help future generations of ACHD patients—but I can’t do that if I’m not attending to my own health first.
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