Yesterday during my weekly therapy session, my therapist and I talked about my health. This is usually the topic of discussion and one of the main reasons I put myself in therapy. I finally opened up a little deeper yesterday. See, I have a tough time truly opening up and letting people in. I’ve got these large walls I’ve built when it comes to certain parts of me, and my health is one of them. I talk about it lightly with others because if you get too “real,” it frightens people.
I see the fear and sympathy in everyone’s eyes when I don’t talk about it lightly. When I start to talk about the heavy stuff, people rearrange their faces, so I can’t see their discomfort, but it’s all in the eyes. Your eyes reveal all the things your face isn’t saying. That’s one of the reasons I focus on someone’s eyes when I first meet them. I digress, I can see the sadness in their eyes. I can see my friends and family getting upset. When I see this, my tough exterior goes into effect, and I stop talking.
I know that those who care about me are allowed to feel a certain type of way. They’re allowed to be upset and think things are unfair. Lord knows I do. I’ve cried what I could only imagine the amount of tears that could make up a large body of water. But herein lies the problem. They’re thinking about how it effects them if something happens, not how this truly effects me. The problem with this is a dynamic has been created that’s even more unfair. I always have to be the strong one. I can’t show too much emotion because it triggers fear in those that care. If I stay collected and calm about it, then it must be okay, right? Wrong! Instead, it makes it very lonely for me. Those first few moments I’m alone after these exchanges, I break down. I get in my car and get to the end of the street and sob into my steering wheel. Or I wait until I’m home, then I sit in the shower holding myself while sobbing.
I’m starting to reach the end of my rope with this dynamic. I’m finally beginning to be brutally honest. When asked if I’m okay, I’m finally admitting the answer is no. I’m talking about my health more matter of fact and not sugar coating it. Maybe this is my way of coping or maybe it’s because I’m tired of feeling so alone in this. What I’ve learned over the last 5 years, is that people don’t want to know the truth. They want a version of the truth. For years I’ve been giving everyone a version of the truth and hiding this huge part of myself.
I’ve written about how I resent my health and heart about how I never wanted it to define me and how I’ve fought so hard to be someone outside of my heart conditions. Yet they consume me. If you’re ever with me and I’m looking off into space with my mind racing, you can bet that 98% of the time, I’m thinking about my heart and all it entails. It creates fear and anxiety that is hard to describe. It eats at me from the inside out. I don’t want it to define me or be my whole life, but it is what makes me, me.
Lately, I’ve been wholly consumed, overwhelmed, and distracted by my health. Every skipped or extra beat creates panic. Anytime something feels off, my mind immediately goes to the worst-case scenario. I’ve been trying not to get my hopes up because I’m yet again in a situation where everything in my life is barreling forward except my health. So, for the last few weeks, my therapy sessions have been all about my health. Yesterday my therapist asked me what I needed from others, and I honestly couldn’t answer the question. I don’t know what I need because, on a deep level, I always deal with this on my own. I don’t let anyone help me with the deepest darkest parts of it. I get told, “you’re so strong,” but honestly, what other choice do I have?
What do I need from others? I could use a conversation with someone where I can’t see the discomfort in their eyes. I could use an emotionless discussion—one where I don’t have to sugar coat it. I want not to have to worry about how this is affecting the other person for just one conversation. I wish not to feel a level of loneliness that consumes me even in a crowd of people. I want for someone actually to understand what it’s like for me. I want for my therapy sessions to be about the common problems of a newly 30-year-old, like dating and developing relationships, making good career choices, or nonsensical problems.
Recently I’ve been asked to describe myself to others. Or to tell someone about myself. I never know how to answer this question appropriately. I don’t think someone wants to hear how I would describe myself or how I see myself. I don’t think it would come out in a socially acceptable way. I’d much prefer to hear how others see me. So I thought about it long and hard. This is how I see myself.
Last night while driving with my windows down the hot, humid air on my skin, and The head and Hearts- Rivers and Roads turned up, I felt overwhelmed. That kind of overwhelmed that makes tears silently fall down your cheeks. Something triggered an emotion that was just under the surface and was needing to be released. There it was a few simple tears while singing the words that were making the emotion show itself. This happens to me a lot. It is situations like this that made me realize that I was a little different.
I always knew I was a little different, and I knew at a young age. Not the kind of difference where I don’t have friends and was socially awkward. The type of difference where I didn’t fully relate to others. I have always had what has been described as an old soul or sad eyes or a sense of sadness about me. Many different people, from family to strangers, have told me this. “It’s that tortured soul that makes you artsy” or “You can tell you suffered trauma, and you carry it.” Doesn’t everyone suffer some kind of trauma? I mean, hell, no one has perfect parents or a perfect life. Isn’t that what makes us human? I know I am a little damaged. I was born damaged, and I do carry the weight of that with me. I have experienced emotional trauma because I’ve allowed myself to be vulnerable. And the older I get and reflect on myself, the more I grow and find myself, the more I realize that maybe there is a sadness to me.
Maybe I’ve always known it, and that’s why I’ve felt different. Perhaps that’s why I talk too much. I talk to distract so it isn’t as noticeable or I’m too boisterous so you can’t see that it’s there. Because being different wasn’t something I was okay with, and I’ve always cared what people thought of me. I have overcompensated my whole life just to please others. The more I grow, the more I am embracing this part of me.
I like sad books, movies, and songs. Especially the songs. I’m a lyrics person. When I can relate to a song, it’s because I can tell that the person who wrote has the same sense of sadness to them too. Hell, I’m the person that cries when I hear a song that moves me—case in point, last night. I can recognize this sadness in art. In paintings, sculptures, and photographs. I like stories that are real and raw. That don’t have the perfect ending. It creates a beautiful kind of sadness. I would describe it as an air of melancholy. Maybe I have it because I am such an empathetic person. Or it’s the trauma. Or it’s that I have an old soul. Or perhaps it is because I am meant to show it to others, in the hope that it moves them.
I’m the kind of person that finds solace in little things. Like when I’m feeling sorrowful I want to go outside and stare at the stars and moon. Or go to a library or bookstore and get lost in the stories. Or drive with the windows down and a song filled with emotion turned up. Or go to the beach and become engulfed by the water. I want to feel everything in those moments.
I’m also the kind of person that is full of contradictions. I want to be fiercely independent but have someone that will take care of me when warranted. I like to be alone but feel lonely. I am creative and lazy at the same time. I want to feel everything and, at times, nothing because it’s so overwhelming. I want someone to see me truly but I have walls I’m not sure anyone can handle. I am afraid I’m a disappointment to others, yet I demand respect and hold myself accountable. I’m all over the map, and I know it. I know that I’m different and sorrowful. I’m empathetic and constantly overwhelmed by emotions. But how do you tell a stranger that? That’s never the things they want to hear. They want you to list off your accomplishments or generic descriptions about yourself. They don’t want to hear, “I like sad music and have an annoying laugh.” Y’all my cackle is out of control, and I know it. Earlier my friend told me my laugh was angelic, and I thought, “yeah, okay, for sounding like a demon is cackling.” I’m sorry if you’ve ever heard it.
How does one describe themselves in a light that doesn’t reflect that they’re their own worst critic? The guilt we feel for our failures and moments of harshness. Or the insecurities we have with ourselves. If we only focused on the good things, we’d come off as conceded. I can’t appropriately describe myself with accomplishments and generic descriptions. I’m full of failures and depth.
February is American heart month. For some that may not be important, but for me it is HUGE. While every month is essentially heart month for me, February is the month that brings attention to cardiovascular disease for everyone else. It is only appropriate that February was chosen for heart month with Valentine’s day being the day you’re supposed to profess your love and hearts desires for others(insert eye roll here). There are hearts, everywhere. So, why is February so important? Did you know that heart disease is the leading cause of death for men and women in the United States? Every year, 1 in 4 deaths are caused by heart disease and most of the time the first symptom is the heart attack. Did you also know that heart defects are the most common type of structural birth defect and occur in 1 out of every 125 births? Congenital heart defects are classified into 35 different types…35! Out of these 35 types, there are different variations and they all differ in severity. Heart disease is a BIG deal and commonly overlooked in one’s everyday life.
This month I acknowledge, with much appreciation, the fact that I was born with a congenital heart defect and that I live my life daily, battling the side effects of heart disease. I was 6 weeks old when my parents heard my pediatrician say, “Uh oh” whilst listening to my heart. I can not begin to imagine what that moment must have felt like as a parent nor will I ever know. When I was diagnosed with an atrial septal defect and an abnormal pulmonary valve the outlook on life with congenital heart defects was much grimmer than it is today. There was not a large number of adults living with congenital heart defects and today the community for adults living with CHD is growing! This is exciting because it means we all got a chance to fight, a chance to live longer and that medical advances have helped each and every one of us. But what about the side effects?
When you’re having your second heart surgery, first open heart, just 3 days before your 4th birthday, all anyone focuses on is getting you through the surgery. I don’t remember much from this experience. Mainly trivial things because at 4 that was all I understood. Dealing with doctors and being in the hospital was a normal thing for me. I remember making everyone laugh because I couldn’t get my bed situated just right. I kept demanding ” A little bit up! A little bit down!” I remember I had a few meltdowns over panties and socks not fitting right. I remember being poked and prodded all hours of the night and how much I hated it. I would scream and cry. I remember the playroom in the hospital and loading the car up to go home. I believe I got a gift from every nurse in that unit. We had a car full of toys and stuffed animals. What my parents and family remember are the risks. The gravity of the situation. They asked the questions, they sat around waiting for hours, they dealt with a child who didn’t quite understand what was happening. They dealt with the insurance and financials. I did what I had to do, I had surgery and I healed.
Things were great after my repair of my ASD and my valve being reconstructed. I flashed my scar to strangers because I was proud of it. As I got older I realized that probably wasn’t the best idea(Sorry fellas no more dress lifting). I grew up knowing I was different, despite not feeling different, and knowing I had limitations. I grew up with a scar right down the middle of my chest and the insecurities that came with it. Growing up with a special heart was normal for me. It wasn’t until middle school that it started bothering me again. I had yearly appointments with my cardiologist for check-ups. I would have an EKG and echo, I always requested to watch space jam during my echos because if you have the opportunity to watch space jam you do it. I looked forward to the visits for that reason. My heart never felt weird or abnormal to me, but 7th grade it started to. The only way I could semi-accurately describe it was as if my heart had butterflies and not my stomach. While I was a boy crazy teenager I definitely wasn’t in love and having butterflies of the heart. I went to the ER, wore Holter monitors like crazy, and went to my cardiologist multiple times. We could not figure out what was going on and as quickly as it started it stopped.
Fast forward to my junior year of high school and my heart starts acting crazy again. I wore a heart monitor the majority of my junior year. I am not exaggerating. I wore one long enough that I had permanent red circles on my skin. My skin was thin and raw in those spots. It took MONTHS for my chest and abdomen to look normal again. Not to mention those old school monitors sounded like something out of a sci-movie when recording and transmitting over a landline phone. It was a nice excuse to step out of class whenever I wanted, I didn’t want to distract the class or draw attention to myself. I don’t like drawing attention to myself, as hard as that is to believe. Wearing the monitors for a total of 6 months, yep half a year, paid off. We finally were able to see that I was having premature ventricular contractions as well as runs of tachycardia and ventricular tachycardia. Here is what I learned from that diagnosis. 1) Those are electrical issues in the heart. 2) There is no easy fix for them. 3) They were caused by my heart being cut into previously. And 4) this meant surgery. So I did what I had to do. I had an ablation the beginning of my senior year of high school. Nothing like ringing in the new school year with heart surgery. I was lucky this time because it wasn’t an open heart. It was a procedure done through my femoral artery and I would be out of the hospital the next day. I went to Jacksonville and had my surgery. If you don’t already know, you will soon realize, if it can go wrong it will when it comes to me. This surgery did not go as planned. It was a LONG procedure and they had to tape my arms above my head. You know how if you lay on your arm for too long it goes to sleep? Well, imagine having your arms taped above your head for over 6 hours. My arms were like noodles and all I could feel were pins and needles. It was pretty funny for my family and boyfriend at the time. I kept knocking things over and hitting myself in the face, but that is not all that went wrong. When you have an ablation you can not stitch an artery. You have to lay flat and let it clot on its own. Well, I woke up as they were removing my breathing tube. I felt them pull it out of my throat and mouth. This caused me to gag. I then proceeded to lift my head, turn to the side and vomit. Well, I continued to vomit while they moved me from the operating table to the recovery bed. Causing my artery to start bleeding and a nurse to hesitate and move my leg. I passed out. Maybe it was the drugs making me fall back asleep or the loss of blood, I don’t know. I woke up to nurses applying the pressure of their full body weight to my groin and sandbags on my groin. I had to stay in the hospital longer, I was bruised from mid-thigh into my abdomen, and this made my recovery even harder.
The surgery worked, for a while. I tried different medications after surgery to no avail. They made me feel worse and lowered my heart rate. The procedure did show us that my QT interval was slightly longer than normal, but it was dismissed as not a big issue, this will come into play later. From the age of 17 to 19, my life was as normal as could be. I graduated high school, started college, experienced young love, and got my heart broken. My heart hurt in a normal way for the first time. I moved away from home because I got my heart broken and it felt like the end of the world. After moving back home, I realized I moved for the wrong reasons (never move over a boy, ladies), I began to feel off again. The butterflies came back and brought lightheadedness with them. I went to my annual cardiology appointment and relayed my symptoms. An echo, EKG and stress test later, I found out I was complicated. Who knew? I had to try more medicines and again no luck. Some of them I had to stay in the hospital for 4-5 days to be monitored because my heart rate would drop alarmingly low. These hospital stays are when I became an expert on how to hook up an EKG machine. I repeatedly had to hook it up to myself when I felt anything cardiac related. After medicines failed we resorted to another cardiac ablation. It all happened quickly. On a Friday in May, we scheduled me for surgery on Monday. My sister, Devon, drove me over to Pensacola that Monday morning and cracked jokes about how I was fasting and she wanted to stop to get breakfast. I got her back by trying to hook her up with the Nurse Anesthetist assisting on my surgery. Fair, right? This procedure was not successful and I ended up throwing up once again. Resulting in me staying in the hospital longer with sandbags on my groin. Knowing this procedure didn’t go as we hoped for we started to explore my options and I was referred to a specialist in Boston to have a cryo-ablation.
8 months later in January, I flew to Boston. The day we arrived they had their first snow. The Patriots won the playoffs and were headed to the Superbowl, imagine that. The next day I was prepped for surgery. An old lady came into my pre-op area with a lady bic razor and shaving cream. Y’all, they sent this poor old woman to shave my bikini region. I don’t know who was mortified more, her or me. Needless to say, I did not need her assistance. My mom and dad were brought back and I told them about this and we had a nice laugh. I was given my sedative because I have to have one before surgeries to avoid panic attacks. According to my mom, once it hit me, my feet fell to the side, my flip flops fell off and I yanked my glasses off all the while saying, “Oh that’s good!” My surgery was semi-successful. I learned that some of my problem areas are on the outside of my heart and my pericardium was stuck to the outside of my heart. Therefore making it physically impossible to reach the areas without causing more harm. Not the best of news, but also not the most discouraging. Before my surgery, I told the doctors about my history of throwing up so we prepared for it this time. All was well and I was in the recovery bed in the elevator going to my room…then it happened. Once again I threw up and lifted my head whilst doing so. I arrived in the CCU with a hell of an entrance. My parents and grandma got pushed out of the way, nurses rushed to me, and I was being rebandaged and then came the sandbags. While I was at Brigham and Women’s in Boston I met with a cardiologist who consulted with mine at home about some things they had discovered.
One cardiac MRI, multiple phone conferences, and lots of deliberating later we realized it was time to replace my pulmonary valve. After consulting with my parents we decided we would aim for October of 2012 so we could get through the busy season, for everyone at work, and then focus on open heart surgery #2. Well, October was a great goal for a date, but we didn’t make it that far. Everything happened what seemed like overnight. I woke up one day and realized I was exhausted. Getting out of bed and making myself do anything was taxing. I was short of breath walking from my bedroom to the kitchen. I got in with my cardiologist for him to tell me that this is what happens, “One second you’re fine and the next you’re not” and the executive decision was made that in a month I would be back in Boston having open heart surgery. My sister swept me away to St Augustine for memorial day weekend as a sister trip before surgery. 3 Weeks later I am back in Boston 6 days before my 22nd birthday. I did get to attend a Braves vs Red Sox game at Fenway the day before my surgery and it was AMAZING! The morning of the surgery I stood in the shower and cried while I scrubbed my entire body with a special loofah and soap. I got dressed in my comfy clothes and put on a brave face. I knew more this go around. I was having my chest cracked open, my lungs rolled up, and my heart would be in someone else’s hands. I knew the risks and I knew the statistics. I was terrified which made me antsy and ill-tempered. I tried to focus on the book I was reading and not discuss my impending doom while waiting. When it was finally my turn, I was starving, nervous, terrified and asked for a sedative. They gave me propofol, which I knew was what Michael Jackson overdosed on, so once it hit I proceeded to sing thriller and dance by myself while being wheeled to the OR. At least I am entertaining.
I don’t have much memory from the first day after my valve replacement. The surgery was successful and long. I woke up a few times while in the ICU. The first time my hands were restrained so I wouldn’t pull any tubes or wires. The second time I woke up and they were removing my chest tubes, I felt the pain of the first one being pulled, the morphine had not kicked in yet. Then I woke up when they moved me into a regular room. I did not throw up until I attempted to eat a few days after surgery. My hunger got the best of me and I ordered far too much and too rich food. Throwing up when your chest is super glued together is not fun. Don’t recommend it. I was hunched over like Quasimodo, too afraid to straighten up my back, and I was in extreme pain. My first shower was difficult, as well as my first walk around the floor. I had minor difficulties after getting released. While watching Magic Mike with my Aunt and mom, I noticed my breathing was labored and it was not because of Channing Tatum. We ended up in the ER on the 4th of July with my lung partially collapsing. Once I got back home to Florida I went in for my checkup with my cardiologist and got admitted to the hospital with pneumonia. Other than that I healed and recovered fantastically. Things were great for 2 years. I had felt better than I have EVER felt. I did not realize how tired I was until I wasn’t. I could breath better, I had more energy, and I no longer slept for 10-12 hours a night. I experienced heartbreak again and let my heart hurt in normal ways. I found new love and experienced butterflies in healthier ways. I was finally living with no worries again.
Then the fainting spells and lightheadedness started. My heart would feel as if it was going to beat out of my chest, my head would feel like a hot air balloon, the sound would disappear, and everything would go white. I couldn’t breathe and couldn’t make it stop. It would happen whenever it wanted. I had no control, not that anyone has control over their health. I was scared, angry, and confused. After becoming a frequent flyer at the ER and many heart monitors later my doctors decided on another ablation. So July of 2015 I had another ablation. Things went well and I did not throw up!!! I did, however, get up too early. The nurses told me it was okay and I could go to the bathroom on my own. So, I wanted to be independent and walk myself from the bed to the bathroom. As I was walking I felt warmth running down my leg. I half-jokingly yelled out to my mom, boyfriend, and nurse that I was either bleeding or peeing myself. I couldn’t move my gaze down or I would topple over, so once I sat on the toilet I noticed all the blood. I panicked at started crying and yelling out. Everyone panicked. The next thing I know I had a nurse applying pressure to my groin while I finished peeing. That was awkward and mortifying. I swear these surgeries are filled with more terribly awkward moments for me than you would think. I was swiftly carried from the bathroom to the bed where I had 3 nurses rebandaging my leg, cleaning the blood off me and changing my gown. I was legit buck-naked in front of, easily, 6 people. It’s a good thing my dignity went out the window years ago. I went home the next day and recovered quickly. Two weeks after surgery I was required to wear another 30-day heart monitor. This heart monitor saved my life.
Day 30, 6 weeks after my surgery, I was leaving work and walking to my car when it hit me like a ton of bricks. Rapid heart rate, no sound, everything went white and I couldn’t breathe. I pressed the button on the monitor, leaned into my car, and slid down the side of it onto the concrete. I came to and felt fine. I got in my car and proceeded to drive home. On my way home the people from the monitor company called me to check on me and tell me they were contacting my doctor. I got home and ordered a pizza and made a bowl of cereal. I did not get to take a bite of the cereal. My phone rang with my doctor on the other end. We finally caught it. I was experiencing deadly rhythms of the heart. My heart wasn’t beating. It was fluttering. I rushed to the hospital in Destin and was escorted via ambulance to Pensacola. I was in the hospital for 3 days then I had my ICD placed. I had a foreign object permanently implanted in my body. It is noticeable, it changed my life, and I hated it. It was painful and the mental recovery worse than any other surgery. I eventually got used to it and life got back to normal. Once again experienced heartbreak unlike any other before and forgot about my arrhythmias. I was finally doing better and feeling better. 3 years after being implanted it charged and fired up. Once again my life was saved. Now I won’t go into extreme detail since I have previously written blogs regarding getting shocked, but this shock is leading me to face another difficult path of living with heart disease.
I finally faced my diagnosis of Long QT syndrome. There is no cure for it, at this time. Just last week I did my genetic testing to determine which specific form of it I have. There are 16 different types of LQTS and they all are a cause of a different gene mutation. Not only is this happening but I am having to deal with side effects from my aortic stenosis. In the last week, I have had 3 veins blown while having labs drawn, been to 3 different hospitals and had an echocardiogram done. I am trying to patiently wait for my results, but I am beginning to feel that level of tiredness, I once felt before, creep in. Sleep is all I think about. I am constantly short of breath and any exertion makes it worse. My arrhythmia and lightheaded spells are increasing despite taking medication. It came on suddenly and now I am stuck in limbo waiting for answers. I am once again not in control of my body and it BLOWS!
I am telling you about my long cardiac history because it is February. I am shedding light on what people living with congenital heart defects, congestive heart failure, and heart disease in general deal with daily. Not everyone has as an extensive history as I do. Not everyone is as complicated as me, but heart disease is common. You could have subtle signs and genetic markers. Go to the doctor and have a cardiac panel performed. Have a stress test, an EKG, or an echo done. Stay ahead of the game. Have it done once a year… Have it done in February. Take it from someone who has been cracked open, you don’t want to be the one on that operating table. Here is to cardiac awareness and to American heart month!