I rarely talk about my congenital heart disease, because it doesn’t affect me like it could (knock on wood). Until recently, most people who know me online and IRL had no idea I even had a “problem”. But see, that’s the thing. It’s not a problem, and it’s so much a part of me that calling it a problem seems…problematic. Here’s my journey, as I know it. Since my mom reads the blog, she might chime in on the comments, so you can get her perspective. Or she won’t. Who knows?
I was born in 1976 with Transposition of the Great Vessels, which is now a very broad term for my heart was pumping all of my oxygenated blood back to my lungs, and the deoxygenated blood to my body. When my heart grew, the vessels attached in positions opposite to where yours (probably) did. So, I was born blue and rushed across the street to another hospital so they could figure out why and what could be done. I don’t think my mom even got to say hello.
They figured out what was wrong, but I weighed in at 4.5 pounds (2 kilos), and they really needed me to be 7 pounds (3.17 kilos) before they could try to fix my heart. I spent time in an incubator, and my mom fed me every 2 hours or so to fatten me up. Can you imagine how exhausted we both must have been? They also made sure to prepare my mom for my death. When I was 3 months old, I was finally fat enough, and they fixed my heart with the Mustard procedure (named for the guy who invented it, and not my favorite condiment), which means that they created a baffle in my atria so that the blood could reach the proper side of my heart/body mechanism. Since I wasn’t aware of any of that, until now the story is what I’ve been told by my doctors and parents.
When I was five, we lived in Arizona, and it was insufferably hot. I remember one day, just falling asleep in school and waking up in an ice bath. I was terrified, and was promptly taken to get a penicillin shot. I had, apparently, spiked a fever hot enough to cause me to pass out. As far as I’m aware, all tests came back negative, and they never did find out what caused that episode. They were sure I was a gonner, though. (Surprise! I wasn’t!)
For the most part, my cardiac life was pretty uneventful. I did my yearly exams with my cardiologists, complete with exercise tests and heavy-ass Holter monitors. Imagine hauling a boom box on a cross-chest strap and snuggling with it for 48 hours. Yep, that was my life once a year. Still, everything was fine. Prognosis normal. No restrictions. What they knew about congenital heart patients is that they know how to self-regulate. It’s not at all like having someone suddenly have to restrict their activity. So, I went on to take dance classes, and dance on stage in musicals. I played soccer and ran track and swam like it was my life’s mission. Actually, I still think swimming is my life’s mission, but can’t figure out how to monetize it.
Then one day, I was playing volleyball in gym class and passed out. Here we go again, right? Nope. I’m a little headstrong, because I’ve had to learn to be heart-strong. I have never let a little bout of passing out stay my life. I don’t think it even got reported to the school. I just casually mentioned it to my mom, who appropriately freaked out and called my cardiologist. They decided, after another Holter monitor, that I would need to have a pacemaker. Turns out, I have Sick Sinus Syndrome – which means that I have abnormal rhythms caused by the sinus node (paces the heart). At 16 years old, I got a pacemaker, which I thought was pretty cool and better than any piercing my friends were getting.
“I pierced my nipple”.
“So what, I’m 1/90th of the way to being bionic”.
I spent half a decade calling in once a month so they could monitor my pacemaker from afar. During that time, I got my GED 2 days after I left high school, fell in love, fell in love again and married the guy (we divorced a year later), and became a firefighter/medic. See? No restrictions. At some point in the following 5 years, I gained a common law husband and step son, and started bowling 2-3 nights a week, as well as playing pool and poker for…erm…fun. I had a legit job as a bartender a few nights a week. Anyway, I was bowling one night, and it was REALLY important that I get a strike, and I bowled my pacemaker wires right out of my pacemaker. I almost immediately noticed that it happened, because the pacemaker was pacing my shoulder muscle and making my arm jump. It is funny now, but I didn’t sleep well that night. The next day, I went to my cardiologist, who ran the battery out. I was no longer on the tether.
I felt so good that I stopped going to the cardiologist on a regular basis. I mean, I know when it feels wrong, right? I spent 16 years not going to the cardiologist. In November, that all came to a screeching halt – or rather it catapulted me into the ER in Hollywood, Florida. You can read more about that here.
So, why am I telling you this now? And, why have I never really told anyone about my “problem”.
I’ve never told many people – until today – because I didn’t want to be treated any more differently than I already was. I’ve always been a bit of an outcast. I live on the lunatic fringe. I feel awkward in most situations. I didn’t want to add to the oddity. I also didn’t want to gather disability pay and be unemployed/able. That’s for later in life, right?
I’m telling you now, because it’s REALLY important. You need to know, in case I’m ever with you and something happens. You need to know in case anything happens, period. You need to know because I’m about to have 2 more surgeries that are cardiac related in the coming months. You need to know because I’m fucking terrified to do this alone. Mostly, you need to know so that when I check into the hospital for the procedures, you don’t freak out like I’m going to.
I will be having an ablation to correct the atrial flutter that got me plopped into the hospital the last time. Then, we (they) will be removing and replacing my pacemaker. I’m all for this, and sooner rather than later. I feel better when I sleep better, and I don’t think I get great sleep with my sick sinus in full swing. I have a super-low heart rate when I’m resting (45-ish bmp) which is fine because I’m so active. The thing is, it occasionally dips into the 30s and even maybe the 20s, and that’s not safe, even for me and that being my norm. I need a new norm. Mostly because I’m gunnin’ for 80 and want a better attitude. I have noticed that occasionally I have a REALLY bad attitude, and have to try really hard to be loving and kind, because of my heart’s function – I just feel not so good. I want that fixed, too.
So, that’s the sorta story of my cardiac journey. I hope it doesn’t change the way you see me for the poorer. Thanks for reading.
- Congenital Heart Disease is the NUMBER ONE BIRTH DEFECT in the United States, at a rate of 1 in 100.
- CHD comes in many flavors, so mine isn’t the only type, and is probably one of the least-common.
- My mom didn’t give me my defect. It just happened.
- The advances in CHD in the past 40 years are astounding, and I’m meeting people with my same procedure who are more than 20 years older than me. That’s encouraging.
- I am rarely sick, and am a staunch advocate for vaccinating yourself every year against the flu, and every 3 years against pneumonia. Not only am I high risk, (if you don’t get immunized, and are a carrier of either of those illnesses, you will be passing that shit around without even knowing you have it, and this year that could mean you’re responsible – at least in part – for someone dying), I am also very scientifically-minded and believe in the power of medicine. Please, go get your damn shot. If you can’t afford one, I’ll find a way for you to.
- I plan to live until 80. Donating to the Adult Congenital Heart Association will help advance the research.
- I love you. Thank you for being here.