Failure is not something “we” as a society openly talk about. If you’re anything like me though, then you have had moments where you’ve felt like a failure. I tend to compare my life to the life of my peers, THANK YOU social media. As a whole “we” do not get on Facebook or Instagram and post about the things we fail at. We post about our BIG moments. Picture perfect moments(that are usually scripted). Our accomplishments. Our failures are also BIG moments though. So why don’t we share them? I feel that we get so caught up in being perfect and appearing to have the perfect life that we become unimaginably hard on ourselves. I constantly say that I am my own worst critic because it is true. I tend to feel that everything I do isn’t enough or good enough. Hell, I thought I would be in a much different place in life at 29. I thought I would be a different person than I am, but my failures have shaped me to be this person.
I thought I would check all the boxes in my twenties. You know, do everything the way you’re “supposed’ to do it. I’d graduate high school and go to college. I’d get my degree and start my career. I’d meet the right person and fall in love. We’d buy a house, get married and start a family. Let’s all just take a moment to laugh at that, please! I have FAILED miserably at ALL of those “boxes”. While I can laugh at this I also struggle because I see my peers doing all of these things. Checking off these boxes in the “right” order. I find myself green with envy at times and other times I am not envious at all. That’s because I have realized that my failures were blessings. Realizing this has freed me of the weight of my failures that make my green side shine. My path is different than theirs and my timeline is my OWN. Finding this clarity and growing comfortable with it has happened because I openly talk about how I have failed at things. I laugh about it and I don’t hide it away. I don’t feel shame for failing at something anymore and neither should anyone else. So let’s talk about some of these failures.
I’ll stick to the “boxes” I failed to check off. I still don’t have a college degree! My first attempt at college was right after high school like the majority of people. 18 and so confused with adulthood, my heart was not in it. I had no idea who I was or what I wanted from my life. I had a hard time seeing past the day at hand. I took time off of school. I took the time to figure it out. I moved in with my sister(the best roommate ever) and we had our own little house and routine. I worked multiple jobs and took the time to think about my future. I realized what I wanted to do with my life and took my test to get into a nursing program. Passed with flying colors and nailed my interview. Now after 2 attempts I have had to retire that goal and that was not so much a failure because it is out of my control. That was because of a whole other demon I battle daily and will never truly have the upper hand on. I went back to school recently to work towards another dream of mine and my heart decides to stop. So once again I have not failed but had to put my health first. While overall it is a failure because I failed to check off that box, I know that I will continue to work on getting my degree. I will accomplish that goal and it will no longer be in the failure column. I will do it without rushing and sacrificing my health.
And on to another one…failed relationships or also know as relationshits. In my twenties, I had 2 serious relationships that, well failed. Clearly, I am not married or engaged. Now I see that them failing was them working out in my favor. Don’t get me wrong at the beginning of them I had those moments where I thought, “Maybe this is the one!” I really would love to have that beautiful 50-year marriage that everyone dreams about, but I sure am glad it hasn’t happened for me yet. My relationships failed for many reasons, some that were not my fault and some that were. While they aren’t my failures alone they are still failed relationships. The low points that came from it led me down a path that was HARD, but beautiful. I was/am on my path to finding myself without someone being attached to my existence. I have found how to set boundaries. To have personal growth I had to face hard truths. I started going to therapy (and I strongly believe everyone should at some point in their lives) to figure out how to set boundaries, identify toxic behaviors and to identify my insecurities. I have to actively work on these things and without failing I would not have been able to get this. I had to fail. While I may not be married or engaged like I thought I would be at 30 at least I didn’t marry the wrong person. I have had the opportunity to figure out exactly what I want in a partner and find my peace. Peace is something I never even knew I needed. I am now so comfortable alone that I refuse to disrupt this peace unless someone is absolutely worth it.
Obviously being alone means I have not been able to start a family, not that being married is the only way you can start a family, but you get my point. But being alone is not the only reason I haven’t popped out mini Madelyns. I really did think I would be a mom by now and that I would eventually have 4 kids. Now, this isn’t a technical failure on my part. For those that have read my blogs or know me, you know that I can not have kids. While that is not my fault, completely out of my control and I in no way shape or form caused this to happen. I still felt like I failed as a woman. Please, please spare me the whole, “just because you can’t have kids doesn’t mean you failed as a woman” or “having kids is not the only thing a woman can do” speech. I know bearing children and starting families aren’t the only thing a woman can do or the only thing that makes us a woman. Biologically, however, it sets us apart from men. We are given the ability to grow life inside of us and I have moments where I feel like a failure.
While I failed to check off those big boxes we’re told we must accomplish to be successful, I have also failed at many other things. I have failed at any and every fitness challenge I have set for myself. I am currently living at my parents for the 2nd time in 3 years. I have failed to hold myself accountable for the goals I have set for myself. I have failed by letting myself get discouraged because I see my peers’ lives progressing faster than mine and I have failed myself by not openly talking about the things and ways I have failed. Our hard moments in life tend to be kept secret and swept under the rug. We put up our “happy” pictures and filter our lives so they appear constantly perfect. I am guilty of it. I have deleted photos after a break up so people can’t go back and see where my relationship failed. I post updates of my health when things are going well and I post photos of a happier time while laying in bed struggling with depression. When you struggle with depression and you have those days when it takes everything to get you out of bed just to shower, you feel like you’re failing. I fail A LOT at things. I hate being bad at something. I get discouraged easily and I have cried endless tears because I feel so far behind sometimes. But I am realizing that it is okay that I have failed. It is okay I am not the person I thought I was supposed to be. It more than okay, to be honest, and accept the things I have fallen short on. It is okay because being open and honest about it has allowed for personal growth I did not know possible. It’s allowed me to be vulnerable and be thankful for my big moments that are good. I have been able to accept that my timeline is my own and however small my progress may look to someone else, it is still my progress. It is moving forward at the pace that is right for me.
I am not writing this to preach change upon others. I am writing this in hopes of being relatable. To let others know it is okay when you try something new and you suck at it. It okay to acknowledge your failures. It doesn’t make you seem less than it shows you have courage instead. It is okay that you haven’t checked off those boxes and it is okay if you aren’t the person you thought you would be at this point. Talk about your failures!!! It allows you to grow and to set new boundaries. It helps you see the good things that came from failing.
I spent the last decade battling heart disease. Seriously, in 2010 everything started to go haywire. In the last 10 years, I have had 5 out of my 8 heart surgeries. I have spent (my whole life) but all of my twenties worrying about my heart. I’ve lived in fear, with anxiety and stress. I’ve battled serious depression. Don’t get me wrong, I had good years. Years where everything seemed to be fixed and okay. But, then I had years when I had major surgeries within a few weeks of one another. The past 10 years has been one HELL of a journey. You learn so much about yourself when you fear death. With every surgery and every dose of anesthesia I would silently beg myself to wake up. My only want was to be strong enough to endure what was being done and to wake up in that recovery room. The pain afterward didn’t matter. The life long limitations didn’t either and it’s because of that word LIFE. All I wanted from this decade was to make it out alive.
I am happy to announce that I have made it out of the 2010s and with a new lease on life. I spent time in the hospital last week and spent the whole month of December trying new medications. We have FINALLY found a combination that is seemingly working. I feel genuinely better. I feel good about it. I didn’t want to take medication for the rest of my days, but if that’s what it takes then that’s what I will do. So this decade and new year will not be about that whole “new year new me” crap. I’ve found that my resolutions come at all times and working to better yourself daily is far better than any false promises for a few weeks in January. This decade and new year will be about no longer living with the fear of not waking up. I got too close to it a couple of times and I never want to do that again. This decade I will get to focus on really living my life instead of silently fighting for it.
I write this as I take my morning dose of medication. I have to smile about it all because 10 years ago I would never have thought I would’ve gone through everything I did. And at one point I thought taking medication indefinitely was the worst thing that could happen. I’d say cheers to a decade of no heart surgeries but I will not make any promises because problems can always arise. Plus I have to have my pacemaker batteries changed in the next two years. But, here is to a decade of not living in fear. And to actually wearing my Invisalign for the next two months so I can have the smile I want this decade. I really have got to get better about remembering to wear those. Also, are we bringing back the roaring twenties? Because if so I picked the wrong decade to start out with dry January…
I always thought that airports would play a much larger role in my life than they have, much like I did when it came to the Bermuda Triangle. Was anyone else overly concerned about the Bermuda Triangle around the age of 7 or 8? I was terrified I’d fly over it or go on a cruise and BOOM disappear. Why aren’t we still concerned with that? I digress, my point is that when I was younger I thought that airports and airplanes would be a huge thing in my life.
Who can blame me though, right? We watch movies and television shows where in the airport there are pivotal moments. Tearful goodbyes, declarations of love, and huge over the top reunions. We read in books about how sitting on the plane there was this moment of clarity, some great life altering moment where everything clicks and all the fear or doubt fades away. Then there is this whole aspect of travel. How travel changes your being and your outlook and how it is immensely important that one travels in life.
The closest thing I’ve had to a life altering moment on a plane was when I was “that person”. I had recently ended my relationship and been working nonstop. I was flying late at night, after working a close then double and then open shift, and I was on my way to Tampa to be with my Aunt while she had an ICD placed. I was overly exhausted and experiencing emotional overload. Well fast forward to my point. There I was traveling alone and I decided to watch a movie on the plane. I watched Table 19. It’s a good romantic life lesson type of movie. It had its happy, funny, shocking and sad moments. Well there was a moment when the couple it was focused on had this emotional fight turned reunion. In that moment I realized that my weak hope of my ex ever “coming around” to being an adult was null and void. I wept. I balled my freaking eyes out. I cried for feeling like I had wasted the last 4 years of my life and for being naive enough to think that movie actually would be something that happened in real life. Y’all, the poor teenage girls sitting next to me thought I was a psycho. Other than sitting next to a screaming child or a Bonnie Raitt fan that “toured with her” and gave me a lifetime of meaningless knowledge about Bonnie Raitt, absolutely nothing profound has happened to me on an airplane. I’ve never been in a life saving experience, like Greys anatomy, or realized that I was deeply in love with some like Rachel in friends. I mean she got off the freaking plane for Ross. Instead my time on planes have been meh. I’m typically reading or busy watching my friend Jes sleep with her mouth open 🤣. Love you Jes!
I’ve never had a tearful heart wrenching goodbye or a beautiful run and jump into one another’s arms kind of reunion in an airport. Instead I’ve been that girl who didn’t have a napkin and licked chocolate off of her phone screen while waiting to board the plane. I really have no shame, that’s kind of endearing right? In September I purposely chose to fly home hours later than my friends. One it was cheaper and I’m a cheap ass. Two I thought a little quiet time after a bachelorette weekend would be nice. And three I hoped I would have some life altering moment. Instead I sat looking out the window at the runway contemplating my life. I sat there and cried silently over my medical saga and my current state of affairs. The only significant thing that happened that day was I realized airports, air planes and air travel had not lived up to the hype. I also didn’t throw up from my hangover so it was a semi successful day.
I haven’t traveled nearly as much as I’ve envisioned for myself. I had big plans to see the world and to keep my mind open to new experiences, different cultures, and all the things that I could learn from. I’ve traveled more than others, yes, but not near as much as one should. The world is a scary and beautiful place with the knowledge that can help everyone find what they’re searching for in life. I’ve been far too boring this past decade and have not explored enough. Maybe it’s because I am overly excited about my upcoming trip to Hawaii or because I recently watched Julia Roberts in Eat Pray Love, but that wanderlust that’s ingrained in my soul is yearning to be unleashed. Maybe my goal for my 30th year should be to just say, “Screw it, let’s do this” and cross off some of these places on my must-see list. Maybe then I will have one of those climactic moments on a plane or in an airport. Something to live up to the hype I developed in my childhood. Maybe I’ll be like Kate Hudson in Almost Famous. That realization on the plane that changes everything and sets in motion bigger things leading to that window seat to Morocco. (If you don’t understand the almost famous reference we can’t be friends, I’m sorry.) Anything has to be better than sitting on the tarmac for 3 hours learning about Bonnie Raitt…right?!
I would like to know what it is like to not be complicated. To not be so completely complex that you feel like you have no control over your own body. To be genuinely healthy and to not live in fear. I was asked the other day what my main concern was with all of the electrical issues going on with my heart. My answer was simple. I fear that I’m going to go into V-fib and be shocked and hurt myself or someone else. I’m afraid it’ll happen when I’m driving and I’ll cause an accident. I’m afraid it’ll happen when I’m awake and alone and I’ll fall hitting my head or hurt myself worse. Most of all I am afraid that there is no solution to my particular perplexing issue and that it could be my demise.
My whole life I’ve been rather challenging. The punishment was always worth the crime as a child. I always pushed my limits with my parents. I tend to tell the truth when people aren’t ready or used to it. I’ve been an ever-evolving person. I’ve had many stages in my life and I’ve only recently really come to know who I am as a person. My emotions have always been complex and so has my personality. I now appreciate my peculiarities and obscurity. Besides my challenging and evolving personality, my health has been a whole other beast.
While I have made it well known my heart has always been far from normal. It’s been something I’ve fought against and resented my whole life. I didn’t want it to define me and that’s exactly what it has done. It’s what makes me who I am. It’s consuming. While all of my friends and family would describe me as strong because of it I feel completely at its mercy. It started out abnormal, which to me is kind of ironic because I feel like I’m a little anomalous as a person, but it’s grown to be quite literally one of a kind. My particular malfunction in the heart is not a structural problem anymore. I’d kill to go back to my valve being the only serious issue. An easy answer and an easy fix. Structural issues of the heart are simpler, but no, I have to continue to be challenging.
A lot of you are not in the medical field and don’t know medical terminology and don’t exactly understand how it all works. Your heart has an electrical system that makes it beat correctly. That lub dub you’re supposed to hear occurs because of the electricity flowing through your heart. My heart, however, likes to have premature ventricular contractions(also known as skipped beats) at an abnormal rate. It also likes to go into ventricular tachycardia, which means my heart beats WAY too fast. I just learned the other day that one area of my heart was beating at 300 beats per minute during one of these spells. When this happens my heart feels like it’s beating out of my chest. Also when this happens my heart gets stuck in this rhythm of beating too fast to actually pump. When this occurs I am not getting oxygenated blood throughout my body because my heart can’t efficiently pump it out. When it’s stuck like this the muscle then begins to spasm and not beat all. That is known as ventricular arrhythmia and ventricular fibrillation. My pacemaker is designed to try to pace my heart back into a normal rhythm and when it cannot my defibrillator kicks in. If I didn’t have my pacemaker/defibrillator I wouldn’t be here today. I have had at least one spell of ventricular tachycardia and arrhythmia every month this year. I’ve had more but there hasn’t been one month without. I could have died at least once every month this year without my ICD(implantable cardiac device).
Finding this out and being told just how severe and serious of a case I am has been absolutely overwhelming. Honestly, there isn’t a word to describe the emotion I am feeling. I knew it was serious and I know that I downplay it to everyone else, but I can’t anymore. I can’t pretend I am okay and that I am normal anymore. I can’t mask my fear and uncertainty anymore. It is so exhausting physically because of the arrhythmia and the high number of PVCs I have regularly. I am extremely symptomatic with it all and it physically drains me. Also, being so emotionally concealed and strong for everyone else is beginning to take a toll. Completely relinquishing myself to the fact that I am not healthy and will never be medically “normal” is proving to be difficult and incredibly depressing. I’ve got a lot of uncertainty ahead and it’s not going to be easy. From starting a medicine with a black box warning label and severe side effects to accepting that there may never be a solution. It’s going to be a tough journey with a lot of ups and downs.
To everyone that has reached out and to everyone that has respected the fact that I am not ready to talk, I thank you. I have a lot I need to process still. Emotions are all over the place right now. But I appreciate every one of you that is in my corner, thoughts, prayers, positive vibes and listening ears, you all mean a lot. I have some of the BEST friends and even better family.
Well, here it is, my month, the month of June. At the beginning of the year I had set goals for each month, some of which I achieved and some I fell short of, but June’s goal was a month of me. A month of self-care and being selfish. I thought it was a perfect fit for my birth month and now that it has arrived I realize I need it more than ever.
The last few weeks, months, I’ve been busy. If and when I have had downtime I find myself overthinking and over-committing. I have managed to keep my schedule full and my focus on myself at a minimum. I have got to remember that being busy is not a personality trait and it is not how I want someone to describe me. I don’t want to keep myself constantly going and not enjoy the little things. I don’t want to give someone the wrong impression of myself because I am too busy. I have got to stop neglecting myself. My wants and my needs. I need to slow down. I always get caught up in whatever is going on around me and silence the voice in my head telling me to calm the f down!
As of late when I do have downtime I keep finding myself mindlessly scrolling through social media. This is such a negative way to spend my time. I find myself comparing myself to my peers and getting stressed. I should be doing things that promote my mental health, my well being, and myself rather than stress me out and cause me to over analyze things. So, starting today, I am removing all my social media apps from my phone. Well, it’s only Facebook and Instagram, but they’re being silenced for a while. Not having them at my fingertips will hopefully encourage me to spend my free time more productively. I have also been thinking about how I don’t need to be so readily available. I want to maintain some mystery. I am selective with what I post and write, but I have decided to be a little more in the moment than on the screen. If you want to know what is going on in my life you will have to text or call me. We will have to have a proper conversation, make plans, or hell do something spur of the moment. But if you want to be in my life then effort will have to be made. No more play by play on social media.
I am going to spend more time focusing on me and less time apologizing for it. I am going to make myself a priority this month. Staying in more to get rest. Spending less money. Working two jobs to pay off my credit card and to save. Actively working on getting things together for my move. Reading at least one of the books I have in my “to read” pile. Cooking more since I genuinely love cooking. Eating healthier and drinking more water. Exercising with my girls Lilly and Ellie! Spending time with those who make my soul happy. Spending more time outdoors AND most of all doing WHATEVER I want on my birthday. It’ll involve sushi and being on the water of course. I keep telling myself I am going to do more for myself, focus on self-care, and I don’t. I get wrapped up in the hustle and bustle of life and trying to the best friend, daughter, sister, employee, etc., I can be. So, I am vowing to myself for this whole month to focus on MYSELF! I already spent the first 4 days working, cleaning, cooking and watching a totally cheesy Netflix show.
Self-care isn’t always about face masks, bubble baths, getting your hair done or pedicures. Although I will be doing all of those things this month…it is my birthday and all. It’s about making sure you are mentally, emotionally, and physically in your healthiest and happiest state. It is making sure you are taken care of and your heart is full. I have been neglecting myself. While I have been pushing myself out of my comfort zone in many aspects that past few weeks, opening myself up to new opportunities, and making big changes. I haven’t taken a step back to figure out how it is affecting me. I have been putting others first, which isn’t a bad thing, but I have to remember that my well being is most important. Being selfless is wonderful as long as you don’t lose yourself. I tend to lose myself in trying to be the person everyone needs me to be and not be the person I need to be for myself.
I am letting the month of June and the last birthday I voluntarily celebrate(29 forever club) bring the opportunity to modify a few things in my life. I am also letting it bring a month full of celebrating and using the excuse, “Well it’s my birthday so…” While I love writing and sharing my life with those I love, taking this break from oversharing and living more in the moment seems to be the right thing for me at this time. I hope everyone enjoys the month of the summer solstice. And if you see me this month looking a hot mess or having a little too much fun just remember…its the month of me. I am not trying to impress anyone, just doing what I want to do!
Sitting here waiting on my parents to arrive for dinner, I was actually on time for once, and I find myself thinking…”Holy shit! You’re about to be 29!” Where did my twenties go? This panic has set in a few times over the past 5 months.
Where did my twenties go? Why did I think I had all this time to accomplish things? Why am I so unsatisfied with where I am at in life right now? Did I even do anything meaningful in my twenties? Questions like these have been plaguing me and leading to what I can only assume is an existential crisis. Quarter life crises are played out. I’m taking this one to a whole nother level.
Existential crisis is also known as that moment when one questions if their life has meaning, purpose or value. I’d say mine definitely started brewing after my brush with death in November. I started thinking about what if I wouldn’t have been lucky enough to have my defibrillator? Would my short time on earth have made a difference? Have I made a difference to anyone other than those genetically programmed to love me? With these circumstances and 30 looming around the corner, I find myself pondering the deeper questions in life.
Recently I had someone ask me what the one thing I wanted from life was and I did not even have to think about it before responding. I want to make a difference. I couldn’t figure out exactly how to communicate it at the time, it was late and there had been drinks involved, but after thinking about that conversation I now know how to convey exactly what I meant. I want to make a difference, not in the sense of changing the world, but in helping others. I hope that my kindness, vulnerability, empathy and hopefully my words can make a difference to someone. To help them in their journey through life.
How do I go about doing that? How do I figure out what I want to do in this life that will help me achieve my goal in life? I thought it was Nursing. To be a good nurse, the kind of nurse that makes being in the hospital bearable. My health made it clear that that wasn’t it and now here I sit almost 29 feeling a little lost. Do I continue to write and eventually write a novel? Do I work to eventually open my own book and record store, since books and music are things that changed my life? Do I work for a charity like the American Heart Association? Do I move or do I stay in my comfort zone? How do I figure out the answers?
In January I had someone recommend the book 30 before 30. As I have slowly read this over the past few weeks I have been all over the map. I have related to the author, been inspired by the author and been envious of the author. She writes about how she made a mess of her twenties and accomplished all these small goals she set for herself. While reading this book in public I get unsolicited advice from strangers like, “Don’t worry your twenties are for figuring things out.” First of all, this isn’t a self-help book and what exactly are we figuring out in our twenties? Did I do my twenties right? Did I make a big enough mess? Did I accomplish enough? Does anyone else feel this way?
I spent my twenties in serious relationships and having heart surgery. Reflecting on my twenties I guess I can say I have realized just how strong I am. I was put through emotional and physical hell with 5 separate heart surgeries, all differing in severity, and I overcame every obstacle thrown my way. I never gave up and I continue to fight to be the healthiest version of myself. I don’t accept the answer “no” from my doctors. I loved with all my heart and in two completely different ways, two people. I learned to let go and how to take time to heal from hurt. I learned to be careful with who I trust and what I won’t put up with. I learned that sometimes the tough decision is the right decision. I learned what a broken heart feels like and how cold the bathroom floor is at 3AM when you’re sobbing and wondering why someone doesn’t love you. Most importantly, I have learned how to forgive and grow from disappointment.
I have all these questions heavy on my mind and heart as I approach my golden birthday and I have the typical late twenty-something shit going on too. Will I be forever alone? Is there anyone worthwhile to date? Do I have too much baggage? Why am I dissatisfied with my job? Do you ever feel like an adult? Being single at 29 was definitely not where I thought I would be when I celebrated my 20th birthday with my new boyfriend. My ability to self-sabotage relationships at this point in my life is uncanny. I seem to either put my foot in my mouth or retreat into my shell (there is your turtle joke, Alexandra!) and become too nervous to be myself, to text or call first, or to innitiate anything. Navigating your late twenties trying to figure out when you’re supposed to feel like an adult and how to act like one blows. I feel stuck in a transitional state. Every decision I make has so much weight to it now.
All of this being said, or written out… whatever, it has made me decide to develop my own list of 30 before 30 goals. Some big, some small and some that may seem silly to others, but they’re my goals. My goals to make sure I successfully make a mess of my twenties and figure things out. In the last year of my twenties I’ll be bolder. I’ll fight my fear and text or call first. I’ll live a little more, unapologetically. I want to be able to go into my 30’s and know that I made the most of my twenties. Take this last year by the horns and “figure things out.” Maybe answer the question of what can I do to make a difference? It may seem like a silly goal to some, maybe naive or make me seem like a dreamer, but I don’t think that being a good person who wants to help others is a silly dream.
Since people relate to and like photos. Here are some photos of some of my birthday celebrations through out my twenties for your viewing pleasure…enjoy
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!