Congenital Heart Disease and Me

Congenital heart disease. CHD for short. It is the number one birth defect, and I was born with it. It’s an interesting thing. CHD. There are about forty known types. However, CHDs are like snowflakes. No two are exactly the same. Someone can have the exact same CHD as another person, but the way they fight it and the way the body handles it can be totally different. CHD can cause emotions and physical issues, major or minor. I am blessed that any emotional or physical issue I’ve ever dealt with has been minor. Truth is, I see more good than bad in this disease. 

CHD patients may experience certain emotional issues. These issues can be minor or major. Some have separation anxiety. Some have trouble bonding. Some have depression. And that barely touches the surface. There are so many issues that can come with this disease, and they aren’t all emotional. Some CHD patients can’t ride rollercoasters, can’t do much exercise or sports, tire easily, and lack fine motor skills. 

Some kids grow up embarrassed of their zipper scar. Some kids are fearful of how long they have on this earth. Some kids are in the hospital constantly.

As a kid, I used to think that when I was older I wouldn’t get sick very often. I was deceived by the idea that adults were almost never sick. But you know something? Just because I become an adult, it doesn’t mean my CHD is going to go away. It doesn’t mean I’m never going to be sick again. It doesn’t mean I’m going to stop seeing a cardiologist. It doesn’t mean I’ll get to eat sushi. It doesn’t mean CHD won’t be a part of my life. It’s weird for me to think that I will one day be an adult with CHD. But I don’t know why I find it weird. I’ve always had it, so I’m real not sure why I find it weird.

But…

I don’t hate having heart disease. I don’t wish it would go away. Sure, I have certain times where I don’t feel like dealing with it or with the minor or superficial issues that come with it. But honestly, it really isn’t too bad for me. I’m very blessed. My CHD could’ve been way worse. I could’ve, and some might argue that I should’ve, died before the doctors even knew what my medical issues were. But here’s the thing: I didn’t die. And I didn’t not die for a reason. I’m here. I’m alive. My heart is beating.

At the age of about ten, I found out about Camp Taylor, an amazing non profit for kids and teens with CHD. And that summer, my life changed. It’s been about eight years since that wonderful summer, and my life truly has changed. I am now a Camp Taylor mentor, something I’ve dreamed of doing since I was little. Working with kids and families who are going through similar things I went through/still go through is an amazing thing. And I love doing it. This camp is where I’ve met some of my best friends. We consider each other a second family. A mother loved her son so much that she was willing to do whatever it took to help him understand his CHD was nothing to be ashamed of, and in doing so, she helped bring together a second family who understood the pros and cons of the number one birth defect.

I have a second family through this camp. I understand my CHD because of this camp. I’ve learned to advocate for myself. I’ve become proud of my zipper scar. My life has changed.

People have seen inspiration in me. I’ve done things doctors didn’t think I would do. I am willing to test the limits. I am willing to go against the odds.

I love life. Though I sometimes do, I try not to take it for granted. I know it can go from good to bad, and bad to good in the blink of an eye. I love trying new things and going on adventures. I love thinking about things.

But don’t let this post deceive you. There’s more to me than just CHD. I love God. I love to write. Pigs are my favorite animal. I love glitter and pink and I think tutus are fun to wear(believe it or not, I am seventeen). I think pink roses are beautiful, and I constantly say the sky is pretty. I have an interest in astronomy and I love the city of Nashville. I love country music. Chocolate strawberries are good any time of day. I think love and kindness are so important. I believe it is very important to stand by your morals and beliefs. I love quotes and I love songs with a good message. Nicholas Sparks is my favorite author. I love kids. Law and Order: Special Victims Unit is my favorite show. I like to perform and I like to work out. I think make up is fun to wear. I love developing my own thoughts, and I like using examples to explain what I think. I think sarcasm is fun to use, and I love deep conversations. And that’s not all. There’s so much more. And not all of it has to do with CHD.

CHD has caused me to have minor emotional issues and minor physical issues that not everyone can understand. But CHD has also been part of the reason I’ve been on this crazy, fun ride. There are tough days, but don’t let those tough days deceive you. Because I promise you, the good days outweigh the bad ones. I am more than okay. I am blessed❤

A few of my best friends and I from the mentor workshop this past weekend

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Letters (Part One)

I’m a junior now. This school year has definitely been an interesting one. My best friend(who shares your name)graduated, so it has sucked not having her at school, but we hang out like every weekend, so it’s not too bad. I had a catherization in September. After that, I was sick multiple times. Only recently have I been better.

I was the assistant director during my school’s fall production. I was going to be assistant director for the spring musical,  but I couldn’t do it for health reasons-you’d understand. 

My friend Ally and I aren’t friends anymore. If you were still here, you’d probably know that Ally and I were really close friends. Problems arose last year between Ally, me, and my friend who shares your name. After that, our friendship with Ally didn’t stand much of a chance. It’s okay though. Usually, I’m fine with it. But I’d be lying if I said I didn’t miss her sometimes.

I turned sixteen last year. I would’ve invited you to my sweet sixteen if you’d still been around. Speaking of birthdays, your mom’s is next week. I got her a card, so I hope I got the date right too. My birthday is also next week. It’s the 23rd. I’m gonna be seventeen. It’s so hard to believe I haven’t seen you since I was twelve, even though you went to Heaven when I was fourteen. I wish I could’ve seen you between the ages of twelve and fourteen. I’m pretty excited for my birthday. I’m planning on going out to dinner with my family and my best friend who shares your name. 

It’s been almost three years. If I’m correct, it’s been 2 and 1/2 years. I bet you’re having a lot of fun in Heaven with other former heart warriors and with Jesus. Your birthday is in about three months. You would’ve been twenty five. I wear a heart locket with your picture in it every day to school. That necklace is really special to me. Some days, I really wish I could hug you. I’d love to talk to you again. When I entered high school, it would’ve been nice to have your advice. At any point in high school, your advice would’ve been appreciated. I’m almost done. Half way down with junior year. Then, senior year. Then, college. I’d like to go to Tennessee State. I’d love to live in Nashville someday.

I like to think that you’d be proud of me. I like to think about advice you might give me if you were here. Whenever I talk to people about you for the first time, I like to mention that I thought of you as a big sister. I still do. I’ve been thinking about you a lot lately. You had a really huge impact on my life, and I’m not sure if you know that. I could really use one of your hugs today. It’s been years since I last got to hug you. But I’ll hug you again someday. You told me “it’s not goodbye. It’s just sad you later.” And I’ve never forgotten that.

I met your parents and your brother a few months. They’re really nice people, and I hope to see them again soon. They’ve said that they see a lot of you in me. That means a lot to me. I’ve hoped to be something like you when I grow up. 

I have the text messages you sent me saved along with a few emails. I don’t know if my constant texting you as a kid annoyed you or not. But you never made me feel like I was. Thank you for that. I’m sorry if I ever did annoy you. I just loved talking to you. I trusted you very quickly when we met. I don’t think I’ve ever really said thank you for all that you did for me. Thank you. 

I still have the eye shadow palette you gave me when I was ten. I know it’s old and I shouldn’t wear it. I don’t. I just keep it because you gave it to me. It’s the shape of a flower with purple and pink colors. I also have a sign you made with my name on it. I also have a ton of memories that I hope I don’t forget.

I’m only sixteen (almost seventeen), so I won’t be having kids any time soon, but when I do, my first daughter will have your first name. She’ll grow up knowing how special her name is. 

I’m in an AP English class. I love my teacher, but it’s a difficult class. We did an in class essay today, and I’m really proud of it. I got to be really sarcastic in it. Hopefully, my teacher appreciates my humor. 

It’s been a while since we last talked. I love writing. I find it to be really fun. My favorite author is Nicholas Sparks. My favorite singers are Megan and Liz. I’ve met them twice. I think I want to be a therapist for my career. I like to think I’d be good at it. As it turns out, we both like Taylor Swift. Currently, my favorite songs by her are Begin Again, Long Live, and Ours. I don’t really know why I’m telling you this. Maybe I just like to pretend you might be reading this. There’s a lot I’d like to tell you that I won’t disclose here though.

Just like Carrie Underwood sings,” I will see you again. This is not where it ends.” I mean, she also sings ohs, but you get the point. 

Xoxo Faith❤

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Catherization

A catherization is a minor surgery, in which the doctor makes an incision in either your neck or upper leg. Through this incision, they can fix certain things in the heart, or in my case, they can send a camera to the heart to take a closer look-kinda like an upclose x ray. 

 I had my third catherization(cath for short) in September of 2016. I found out in January that I would have this procedure done. According to my doctor, I need a catherization every five years. I was supposed to get it done over the summer, but I explained to my cardiologist that wouldn’t work because I had commitments to Camp Taylor, a camp for kids and teens with congenital heart disease. My doctor was understanding, as he knows how special Camp Taylor is to me, and worked around my Camp Taylor schedule. 

September came. I was only about three weeks into the new school year(I’m a junior) when my surgery happened.  The day before, my parents and I ordered pizza and watched The Jungle Book. It was a nice way to relax before my procedure.

It was the morning of my cath. I woke up and took my usual medication. My pill was swallowed with water, and I enjoyed every last drop of that small drink I took. It would be the only liquid I could have until much later. Let me tell you something. When you can’t have water, you realize how much you take it for granted. Same with food.

My parents drove me to the hospital. I had my teddy bear that I’ve had since I was not even a year old. I also had a stuffed lion, which had been given to me days before at my pre op appointment. The social worker had been talking to me, and he noticed my bear and said he’d get him a friend. He returned with the stuffed lion which I have since named Stitch because he has a little heart sown on.

We got to the hospital. As I mentioned earlier, I hadn’t had any food. You can’t have food or drinks before surgery, but my parents promised me Chic Fil A for when I was allowed to eat solid foods later that day.

We checked into the hospital and went to the waiting room. It didn’t take too long for them to call my name. Eventually, I was in a surgery prep room. I was given a hospital gown and had to change out of my clothes. I got onto the gurney after changing into the totally fashionable gown. My parents and I took a few pictures and had small talk as we waited for the nurses to come in.

A child life specialist entered the room. I liked her. She has the career I want. We chatted, and she was very sweet. She even gave me her email so I could ask her questions about her job since she knows I want to be a child life specialist too. Next, a nurse came in. She, too, was very kind.

The nurse gave me a… I forget what it’s called. You know the blue cap nurses wear with their scrubs? Well, I had to wear a blue cap as well. I wasn’t happy about it because I had my hair straightened, and I didn’t want to mess it up. Priorities.

The specialist asked what she could do to distract me from the needle they were about to place in my wrist. I explained I couldn’t be distracted. I have to watch the needle enter and exit my body. Still, the specialist talked to me, attempting to calm my nerves. She was asking me about theatre, as I participate in my school’s advanced drama class. 

I told the nurse she’d be better off placing the needle in my right arm as my left arm tends to be stubborn. She didn’t listen and inserted the needle into my left arm. Usually, I’m pretty okay with needles. This time was different. It was inserted into my wrist, which I am not used to, and it hurt. The specialist tried to talk me, but I didn’t respond as I was a bit freaked out about the painful needle in my wrist. The needle didn’t work in my left arm, so it was taken out and had to be placed into my right arm. The nurse was very apologetic, and I wasn’t angry that she didn’t take my advice. She put it in my right arm and was successful. 

Throughout this ordeal, I tried to be positive. On the inside, I was nervous. I didn’t want to show it though. I carried on, laughing and making jokes. At one point, tears were even welling up in my eyes(not the tears you get from laughing so hard), but I smiled and laughed through them. I’m not sure if anyone could see through it or not. If they did, they didn’t bring it up. 

The doctor came in and started up the anesthesia. That was nice. Within a minute, I had fallen asleep(we got some lovely footage of me going on and coming off the anesthesia) From there, I was taken to the operating room. I won’t go into the details of what happened because it is unnecessary and truthfully, not something I am totally comfortable talking about.

A few hours later, I woke up in the recovery room. I was heavy on the pain medications and still coming off the anesthesia, so I was starting to understand what was going on, but I was still out of it. I asked the nurses if my heart was okay. She said yes. I said yay. I said yay a lot, and the nurses thought it was cute, so on a count of three, they all said yay too. I asked where my parents were, and soon, they were brought to the room. 

I was happy to see them. I wouldn’t stop talking. I didn’t have anything important to say. I just wanted to talk. I talked about pigs, Camp Taylor, Chic Fil A, and other things. Speaking of pigs, anyone who knows me really well knows that I really want to own a pig someday, so I appreciate the fact that, even in the midst of coming off of anesthesia from a heart procedure, pigs were still on my mind. At some point, I started getting frustrated. My brain was understanding what was going on, but I was still kind of out of it, so I felt like no one understood that I was understanding. I’m not sure if that sentence made sense to you, but it’s how I felt. I started to cry, and the nurse stroked my hair in an attempt to comfort me.

Eventually, I was brought to my own hospital room. I was placed onto the bed. Once again, I won’t go into all the details because it’s not something I’m totally comfortable talking about yet. I was an emotional wreak. I was crying and felt awful. It honestly is awful when you can’t get out of bed by yourself. It’s awful when you lift your head up, and the entire room spins. It’s awful when you can’t do the simplest of things-things you were doing that morning. I was hooked up to a few machines-nothing too major-just an IV, EKG stickers, a pulse ox, and a blood pressure cuff. To someone unfamiliar with hospitals, that might sound like a lot, but I’ve way more and way worse. It still wasn’t very comfortable, but I was aware that it could be worse. And there was a restraint on my right leg so I wouldn’t move it because I wasn’t supposed to move it after the surgery. I also had a huge bandage over where the incisions had been made. 

The nurse gave me jello. I didn’t want jello, but they weren’t going to let me eat solid food until I slowly eased my way in with softer foods. They wanted to make sure my stomach did okay with the anesthesia. So I ate the jello so I could eat Chic Fil A. My parents left to get me my promised Chic Fil A. I posted onto Instagram and Facebook and Snapchat about what was going on. As many people know, my favorite singers are twin sisters Megan and Liz. On Instagram, Megan Mace(from Megan and Liz) actuallly follows my personal Instagram, which is really cool. She commented on my post, and I was so excited. She commented “Proud of your pretty girl. You’re stronger than I ever could be❤️”. After the day I’d had, it brightened my mood a bit to see her comment. It’s a pretty awesome thing to receive encouragement from someone you call your role model. I later posted a video of me going on the anesthesia, and I mentioned Megan and Liz. Both twins saw the video.

Throughout the day, I received many loving text messages from people, hoping for the best for me. It all meant a lot to me to receive so much love and encouragement from so many people.

I received tons of kind comments from so many people. One girl, who I don’t talk too often, messaged me saying that even though we don’t know each other well, she hoped I’d feel better. I replied back thanking her of course, to which she replied” drama fam sticks together.” Yes, she’s in my advanced drama class. 

I was so incredibly tired. And I don’t mean the tired you feel after a long day. I mean the tired where you’re emotionally and physically exhausted, but can’t sleep.  I ate my Chic Fil A and watched Pitch Perfect and That’s So Raven. 

All night long, nurses came in and checked my vitals. The team of nurses were so awesome. I loved them. They were so kind to me, and even though I wanted to sleep, I enjoyed whenever they came into my room. My nurses seemed happy to see me, and I was happy to see them. A couple of weeks later, they even sent me a card.

That night, I got hardly any sleep. Sleeping in a hospital is next to impossible. I used to think patients were tired because they were sick. Yes, that’s part of the reason, but the fact that a nurse enters your room at least every hour affects your sleep too. Not to mention when one of your machines starts beeping loudly for no obvious reason.

The next morning, my parents went downstairs to the hospital cafeteria for breakfast. The nurse brought me breakfast. I had only a few bites of yogurt. Hospital food isn’t terrible, but it’s not that great either.

The nurse took the bandage off my leg. Before she did, I asked if it would hurt.

“You’re gonna feel a pressure,” she answered.

“So it’s gonna hurt,” I replied. It felt like ripping off a band aid(except like ten times larger) It didn’t exactly hurt, but it didn’t feel too good.

After a few hours, I was finally allowed to go home. The nurse asked if I wanted a wheelchair, to which I declined. Though I was exhausted and still weak, I felt strong enough to walk. My parents and I walked through the endless hallway. As I walked, I realized a wheelchair may not have been such a bad idea. Why was walking so hard? Walking is so easy. I’ve been walking for so many years. The doctor makes two incisions and suddenly I can’t walk anymore? I was not happy.

When we got home, I ate some McDonald’s for lunch before taking a shower. I thought taking a shower would feel great after a long day and a half. That shower was awful. I could barely move. You know when someone walks with a limp? I was walking with one of the worst limps ever. I took my shower, and cried through it. It was so frustrating to me that everything was seeming so difficult. After my shower, I got into bed and fell asleep for a couple of hours.

I didn’t go to school for the whole week. The surgery was on a Tuesday, and we didn’t have school that Monday before. I rested in my bed, and everything gradually got better. My emotional state went back to normal as I recovered. To explain why my emotional state wasn’t exactly awesome, let’s put it this way: mix a ton of pain medication, spending a restless night in a hospital hooked up to things, not being able to do hardly anything on my own for that period of time, going through a couple of embarrassing things(that I am not willing to talk about yet) and being exhausted. With all that combined, my emotional state wasn’t too hot. I hated the feeling I had. I don’t even really know how to accurately explain how I felt. After being home for about a day though, my emotional state got better. 

The next week, I went to school with Starbucks in my hand on a Monday morning. It felt good to be back at school. As I entered the school, a senior saw me and approached me. She was in my advanced drama class. She asked me how I was(she’d seen my Instagram post) and said she was surprised our teacher didn’t say anything. For those of you who don’t understand, advanced drama is like a family, and our teacher usually would tell us such things. The girl was happy that I was back and doing well. Throughout my first week back, students (mainly from drama) asked how I was doing, and teachers were happy to see me. Though I was doing better, I still wasn’t 100%, and I was tired after my first day back. That next week, I performed in my advanced drama class’s annual Bad Talent Show to raise money for our drama program. The junior scene(the scene I was in) won first place!!!

Catching up was way harder than I anticipated it to be-partially because I got strep throat a week later and missed even more school. It took me about a month to catch up. I was fortunate to have a few teachers who were understanding of the fact that I was trying to catch up but struggling. I slowly got back to being 100%.

Exactly two weeks after my catherization, my dad took me to see Carrie Underwood in concert! We had really good seats, and I had a blast watching her perform! It was a nice way forget about school and the catherization for a while.

As for how the surgery went, I had my second catherization back in 2011. The doctor said this cath was even better than 2011(and 2011 was pretty good). My heart is healthy, and that is all thanks to God. He has continued to keep me healthy and strong. A fourth open heart surgery is NOT in my future!❤️

Me with my teddy bear; right before my catherization

Megan (of Megan and Liz) commented this when I posted about my cath on Instagram❤️


Carrie Underwood concert! This was exactly two weeks after my catherization 


My friend and I after the junior dance scene won the Bad Talent Show! This was just over two weeks after my cath!

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