This post is going to be personal, and a little different from what my blog is about.
I look like an everyday, normal, healthy woman right?
Well… I’m not. Shocking I know. I have, what many Americans view as, “an invisible illness.” You can’t see it 24/7, so apparently I’m not sick. (completely untrue.) So let’s start from the beginning. I was born with Congenital Heart Disease. At 8 months old I was diagnosed with it. I was brought into my doctor, almost dead, and had emergency open heart surgery just hours later. At 2 years of age my repairs that they did reopened, and I had to be reopened as well. I have multiple issues with my heart, but the most common for people to understand is an Atrial Septal Defect and Mitral Valve Prolapse. The doctors basically sewed my valves so they can work correctly. I also currently have pacer wires implanted, but no pacemaker. I was able to live a somewhat normal life. Sure, I had setbacks my cousins did not. I can not be in the sun or heat very long. If I’m in the pool for extended periods I turn blue and have to get out. I get sick very easily. I can’t go on rollercoasters or a lot of theme park rides. There were certain sports I couldn’t play with my family and friends. I had to be careful.
I was very fortunate to have a Cardiologist who I just loved. Dr. Ira Dubrow, who passed away earlier this year. I will never forget him telling me, “I’m so sorry Jessica, that God puts little girls hearts in embarrassing places.” Honestly, that made me feel so much better it’s part of the reason my scar doesn’t bother me much as an adult. I was teased or what would be considered bullied in todays terms all my life. I was called Robot Girl, Small Wonder, etc. No one understood why I had to sit out of some things at gym class. I would get weird looks when I had to change because I have this foot long scar down my chest. That I had to wear monitors sometimes because my heart was acting up. I had boyfriends tell me that no one was ever going to love me because my body looked so ugly. That my scar was disgusting. That no man would ever want to be with me. It was, and is, something I still replay in my mind to this day. Yet, Ira always told me not to listen to them. That I was beautiful and they were morons. That my scar was a battle wound, showing just how strong I am and how I fight to survive. Ira also told me that I would have a 3rd surgery before the age of 25. Little did I know what he was really preparing me for.
I am 33 years old now. I passed my expiration date so to speak. I have spent the past 15 months undergoing more cardiac testing than I can even count. I’m really not kidding, I do not know how many monitors I’ve had placed on, how many EKG’s, Echos, Stress Tests, blood work, medicines etc. I found out in August that my, now Cardiologist, felt it was time for the big 3rd surgery. I have seen 3 different teams who all felt the same, but all too afraid to operate on me because I am high risk. I have 30+ years of scar tissue to cut though among a ton of factors that no one understands. Now, I’m at Northwestern Hospital in Chicago with my final team. A team of doctors that specialize in Adult Congenital Heart Disease. Most people don’t understand that I need different care than the typical person with high blood pressure or cholesterol. There are only about 200 doctors in that field in the USA. Plus, insurance does not like to cover this. It’s damn expensive.
So I am currently in my final rounds of testing, or at least praying I am. After this, I will be having my open heart surgery. As of now, I will be getting a mechanical valve for the mitral, and a ring for the ASD. (plus 2 other procedures that are difficult to explain.) They are probably putting a pacemaker in, and I will be on blood thinners the rest of my life. (I was also told in the same breath I will never be able to have children, but that will be a different post.) It was a lot to take it, which shocked me. I figured since I had known all my life I would need this surgery I would handle it well. I didn’t. I went out, got drunk as a skunk, and cried my eyes out. I’ve had some really bad days these past few months. Upset, crying, frustrated, why me etc. I felt like I was losing my mind. Then Ira died. I was more upset, maybe if he was here things would be different. Then 9 millions questions would go through my head. Am I going to die? Will I survive this? What if something goes wrong? What is my new scar going to look like? Is this too much for my boyfriend to handle? Is he going to love me through this? Is he going to think my new scar is ugly? Am I going to think it’s ugly? Can I wear tank tops ever again? Literally… everything you can possibly think of, I did. Then slowly, things Ira use to talk to me about came creeping back into my mind. I am a survivor. I have the scars to prove it. Middle finger to the people who don’t love me for who I am. To the people who wonder why I’ve been sleeping like crazy, taking naps, and generally just too tired to go out anymore. This past month has been extremely brutal with that. I feel like a bear, hibernating constantly. I can no longer do simple things like walk up the stairs, or carry a gallon of milk without needing a nap for 2 hours. I can feel that I’m sick, but no one can really see it. Everyone expects me to be 100% doing all the things I use to, and I just can’t.
I’m currently wearing this Zio Patch pictured above as I write this post. It’s been 10 days, and I have 4 left. It records every single heartbeat for 14 days straight. It itches like CRAZY. Let me tell you. I know some people will find issue that I put this picture up, but I’ll explain why I did.
#1 I have Congenital Heart Disease, it is not an invisible illness.
#2 I have learned to love my scar, and love myself.
#3 It might be one of the last pictures I have looking like this.
#4 I think by showing this, and explaining a tiny bit of what CHD is like, is empowering.
So as I am finishing testing, as much as I resisted and was upset, I’m just ready now. I’m ready to get this over with. I’m ready to learn to live a new life with new things in my body. I’m praying I have more energy after this, and can resume the normal life I was use to. Also, if I’m missing a post for a few days I’m probably just not feeling well and resting. I am not neglecting this blog as it is very important to me. Some days I just really need to sleep. I can’t control that. Thank you for taking the time to read this. It’s very personal to me, as this is literally my life and my heart. So as my tattoo says on my left clavicle… “Avec tout mon coeur.” Meaning, “With All My Heart,” so thank you.
With All My Heart,