**Welcome to my first post about my heart story! Don’t forget to enter my blogiversary giveaway for some heart-appreciation swag.**
I’ve been talking about my health & weight loss journey for some time now… but there’s one key piece of my story that I haven’t talked about yet. I’ll admit, it’s not always easy to divulge such intimate details about yourself and be vulnerable, but the way I see it… if someone can relate or it somehow helps someone, then it’s worth it. In honor of American Heart Month and CHD Awareness Week, I thought this would be the perfect time to tell my heart story. Here goes…
I was born with a congenital heart defect, which is known by it’s technical term: Hypertrophic Cardiomyopathy (HCM). I’ll explain more about the details of the disease in my part 2 and part 3 posts, but first – I want to tell you a story. My heart story.
A Life-Changing Diagnosis
When I was around 1 year old, I started getting chronic ear infections and ended up in the hospital. A nurse just happened to notice something irregular when listening to my heart beat. She asked my mom, “Has anyone ever told you that your daughter has a heart murmur?” Obviously, my mom said no. It seems kind of weird, but that nurse partly saved my life. You see, this heart condition can be really serious if it goes undiagnosed (you’ll see why in my next posts). I don’t remember any of it, but I went through lots of testing, many heart catheterizations, electrocardiograms (EKGs), echocardiograms (an ultrasound that is similar to what they use on pregnant women to see the baby, but used on your chest to see your heart), and so on. My childhood was changed forever by my diagnosis. I was to be medicated daily and was not allowed to participate in any organized sports. For the first part of my life, this wasn’t that big of a deal. I still played with my friends, excelled in academics, and lived a fairly normal life, besides my checkups with the cardiologist and taking medication daily. There’s only 1 major episode that sticks out in my mind, and that was during one afternoon spent swimming in our pool where I started not being able to breathe very well, feeling very short of breath. I’m honestly not sure what happened with that or what the cause was, but I obviously ended up being fine. I also remember having to wear a Holter monitor around on many occasions. A Holter monitor is a small recorder that is attached to your body by stickers placed around the chest area. Physical activity was always harder for me, I got tired and short-of-breath more easily but that was all normal. I just had to know my limits and not over-exert myself. How The Cleveland Clinic Saved My Life
I grew up in Virginia Beach, but ended up moving to the Northeast Ohio area when I was 10 years old. We had to switch my pediatric cardiologist, and we couldn’t have come to a better place, being that the Cleveland Clinic was right in our backyard. I couldn’t be more thankful for that. The Cleveland Clinic has been named the #1 hospital for heart care for the 19th consecutive year.
My formative years meant going through puberty… and little did I know that while I was growing on the outside, I was growing on the inside too – specifically the muscles in my heart. My condition worsened, so much so that I couldn’t even walk up the stairs in our house without being completely out of breath. I was getting dizzy and pale as a ghost. It was only a couple months after my 13th birthday that my world changed forever. December 2002 – I went in for an appointment with my cardiologist. The usual tests were performed – electrocardiogram, echocardiogram, etc. The events that happened next are still kind of a blur, partly because my memory isn’t the greatest, and partly because it was such a whirlwind. I remember the doctor telling us to sit down, and telling us that I was at high-risk for sudden cardiac death and needed to have open heart surgery – the next day. My condition was life-threatening. It was a complete shock, especially for a young girl. I wasn’t mature enough to realize the gravity of the situation or just how serious my condition was. I could’ve died.
We cried, and my mom called my grandparents and all of our close friends and relatives. My mom’s parents immediately packed the car and started the 13 hour drive to Ohio. I was admitted to the Cleveland Clinic and scheduled for surgery the next morning. I remember not being scared, but everyone around me was scared enough for me. With this invasive of a surgery, there is always a risk of complications. Being that I’m an only child and all that my mom has, she was terrified of losing me. The day of the surgery, I remember my hospital bed getting wheeled down the halls to the operating room. I remember my grandparents making it JUST in time to see me before I went in. I remember my grandma bonding with one of the surgeons because they were both from New Zealand. I remember the nurses and doctors being so nice and making me feel calm. I remember the operating room, getting hoisted onto the operating table, and getting prepped for surgery. I remember the stickers on my chest, looking around at all the equipment, feeling cold. The nurses brought me lots of blankets. I remember the anesthesiologist coming in. I remember feeling sleepy, so sleepy. I remember seeing my eyes close and not worrying about whether I’d wake up or not. The thought of something bad happening never crossed my mind.
Somewhere around 6 hours later, the surgery was finished and I was taken to the Intensive Care Unit (ICU). As the nurses tried to take my breathing tube out the next day, apparently my lung had collapsed (my mom tells me), so they had to keep me intubated longer. As soon as my lung expanded (about 4-6 hours later), they were able to take the breathing tube out and once my mom was able to come into the room, she tells me I whispered to her, “Mommy, I made it.” My ICU stay entailed lots of rest & being monitored a lot as I was still in critical condition. About 2-3 days after my surgery, the doctors highly recommended having an implantable cardioverter defibrillator (ICD) put in.
We didn’t hesitate, as it wouldn’t only help save my life in the future, so back into surgery I went. This procedure was quicker (only about 2-4 hours). If you are interested, you can learn more about ICDs and the implantation surgery from The Cleveland Clinic at this link. I am so grateful for the care I received from The Cleveland Clinic – not only for their expertise and for saving my life, but for making me feel comfortable and safe, too.
Recovery and My Amazing Support System
All in all, I was in the hospital for about 5 days and stayed home to recover for at least 2 weeks. I probably missed about 2 weeks of school, though luckily part of my absence occurred during winter/holiday break. I had an amazing support system from so many people. Between the visitors that came to see me and the flowers and stuffed animals, I felt very loved and cared for. My school’s Vice President even came by my house while I was home recovering to give me some of my school work and to drop off cards and a huge banner that my classmates had all decorated and signed. It was one of the sweetest things that people have ever done for me. I don’t think I’ll ever forget that. I wasn’t very popular in school, but the fact that not only my friends but people I didn’t really even interact with on a daily basis kept me in their thoughts and hoped I got well soon really touched my heart (ha, that was actually an unintentional pun).
My recovery was spent on the couch at first, as I was still really weak and sore from the surgery (having your sternum cut open can do that to you…), but luckily I bounced back really quickly since I was so young and resilient. I remember having to clean my scars and change my bandages and having to put this iodine stuff on them. It was weird having a big scar down my chest, but it honestly didn’t even phase me… it just became a part of who I am (and that hasn’t changed since). I have a lot to be thankful for – family that helped me through one of the scariest times of my life, my mom having a good job with a good health insurance plan, and maybe even my dad watching over me… It really puts things in perspective. Life is too short. You never know when it can be taken from you. Sometimes I forget that, and take things for granted, but each day I try to be better and having this platform to share my story is something I can’t even put into words. Any little way that I can help make a difference is something I feel so fortunate to be able to do. It is also why getting healthy is so important to me as well. It’s not just about my outward appearance, it’s not just about losing weight… it’s about being as healthy as I can be since I’ve already got a medical issue to deal with that I don’t want to make worse, and it’s about living a long, happy life and being around to experience all that life has to offer.
Coming up… Part 2: Living With Adult Congenital Heart Defect/Hypertrophic Cardiomyopathy
Stay tuned for Part 2 of My Heart Story, where I’ll talk about what it’s like living with CHD as an adult, and also Part 3 where I’ll go into more detailed information about CHD and HCM.
Most of all… I want to thank you SO MUCH for taking the time to read my story – it truly means so much to me, and I hope I’ve shed some light on this disease.