My Heart Story (Part 1): Growing Up With a Congenital Heart Defect (CHD)

**Welcome to my first post about my heart story! Don’t forget to enter my blogiversary giveaway for some heart-appreciation swag.**

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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.Holter Monitor 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.

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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.

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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.

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  • Oh, Jess. This is crazy beautiful, like you! You’re such a strong woman and this is quite the testimony to that. You’re so brave to share this and your story makes me even more passionate about CHD and HCM.

    The earlier parts of your story are moments I know all too well. I still get nervous to really swim for fear I’ll have another heart episode like I would experience when I was young. I remember How hard it is to get the sticky stuff off after wearing the Holter monitor. I still, from time to time have to bear down and focus on my heart when I feel it pumping out of my chest. The trips to the Cleveland Clinic with my mom were always stressful but we always knew we were in the best hands possible.

    We can accept our hearts as they are or choose to make them more resilient. I’m so inspired by this post and it’s amazing how writing can make others (like me, today) feel so much less alone in their private struggles. I cannot WAIT to read the rest of the series.

    • Your story had me in tears, I am just so moved by it! I am so glad that you shared this story, and please know that you aren not alone. The Cleveland Clinic is amazing at taking care of their patients, and we’re so lucky to live near such a great hospital. I can’t wait to read the next two parts of your story.

      • Thank you so much Chelsea! It means so much that you took the time to read my post. I used to always think that my condition wasn’t as common as it is, I never knew anyone growing up who had heart problems but now that my world has expanded and I’ve learned more, I realize how many people are affected by this. I feel so lucky to not only have been diagnosed so young so that I could take the necessary precautions, but also to be alive (in large part to the Cleveland Clinic). It feels like fate, me moving to Northeast Ohio. Not that other hospitals aren’t great and that they wouldn’t have helped me, but the fact that CC is the #1 in heart care… it just amazes me. Thanks again for your kind words! <3

    • Katie, thank you so much! I am blown away by all of your support, and even though it’s not a fun situation, I am hopeful knowing that I am not alone and that there are other people out there who have similar stories. I love that part about accepting our hearts as they are… I used to feel really bad about myself and my heart, wondering why this would happen to me… but there was no use thinking like that. It is something I can’t change and the only thing I can do is make the best of my situation and be the healthiest version of myself… and also use it to help others. Thank you for taking the time to read my story and for sharing part of yours in your comment, it means so, so much to me. <3

  • Your story is unbelievable. You are a fighter, a survivor and a tremendous inspiration. I will definitely return to read the rest of your story because it truly shows me how short life really is.

  • Your story is amazing- this is so important to me because Alpha Phi supports women’s cardiac care… what an amazing way to connect and see how research impacts YOU!
    Thanks for being vulnerable and sharing your story on the interwebs!!!!

    • Thank you Rachael!! I know, I remember going through recruitment and finding out that APhi’s philanthropy was something so near & dear to my heart. Thanks for reading my story and for sharing with your sisters!

  • This is incredibly brave of you to share your story. I have been working in the cardiac department at my hospital for 3 years now and I see all kinds of patients, even young, so it’s great that you are spreading the word about heart disease through your personal struggles. Can’t wait to read the rest of your story!!

    • Thank you Nikki! That’s amazing that you work with cardiac patients. It still shocks me how many people this affects, especially the ones that go undiagnosed until something really bad happens. Thank you so much for taking the time to read my post, it truly means a lot!

  • My father had two heart attacks about 3 years ago. Apparently he had always had an enlarged aorta and a heart murmur, and he didn’t feel that it was important to tell that to anyone, including his family doctor. Anyway, after a lot of denial and jackassery on his part (in which he didn’t tell anyone he had had TWO heart attacks), he ended up in the Cleveland Clinic, and his team saved his life. They were incredible to all of us during the month that he was there. It is a great tribute to them and to you that you are running today.

  • Your story brought tears to my eyes Jess. Gosh, I feel much more emotional as an adult than when we were 13, but I guess we just don’t realize how serious that stuff is when we’re that age. So glad you made it and can share your story (so much of it I never knew!). You grew into a beautiful lady and touch the lives of so many.

    I know we haven’t hung out in a while, but I’m glad to still call you friend 🙂

    • Aww Amanda! Thank you so much for taking the time to read this. I know, it’s crazy how when we look back we see things so differently. I’m definitely more emotional now too haha! You’re so sweet, and I am so glad to still call you a friend too 🙂 Hopefully we can change that part about not hanging out in awhile though!!

  • This is an incredible story Jess. You are such a strong woman and a lot of it resembles my own family’s heart disease history. EKG’s and echocardiograms are no stranger to myself (and they hurt like hell!). I’ve never felt more lucky to be so close to the Cleveland Clinic who has taken care of my family for longer than I’ve been alive. Thank you for telling your story and showing everyone that it can happen to anyone and any age.

    Looking forward to the next part of this story!

    • Thank you so much for reading, Morgan, and for the kind words! I completely agree, it is such a blessing to have the best hospital right in our backyard. And I appreciate you sharing about your family’s history… that’s why I decided to share my story. I never realized how common it was, and if I can at the very least make someone know that they aren’t alone and they have support, then it’s beyond worth it.

  • Thank goodness for that nurse and also that you went into the doctors when you did. I had no idea that you went through all of that as a child & I was really touched by reading your personal account of what happened.

  • I love my strong and beautiful best friend. I will always remember that time like it was yesterday. I was so scared for you but I knew you would pull through, you always do! I am very proud of you for sharing this story with so many, you will encourage and give strength to all!