Living with a Heart Disease

Alright, I know you all have been waiting for this. I am going to tell you what it is like living with a heart disease. It WILL NOT be all in this post. There is a lot of stuff to tell you, so I will be doing a 2-3 blog post of what it is like living with one. This first post will be a about my past surgeries, future surgery/(surgeries), and the reasons why the thought(s) that goes through my head when I see my cardiologist when I go for an appointment.

Here we go, living with a heart disease can have its ups and downs. You go in and out of the hospital for the rest of your life just by having two open heart surgeries. Yes, I have had two open heart surgeries. My first one was when I was four days old and my second one was 4 years later when I was four years old. From my heart surgeries, I have only three heart valves while everyone, including you has four. Everyone needs four to function the older you get, but so far I don't need a fourth one...yet. They are waiting for the technology to catch up with my condition. My cardiologist said that he is going to do a Heart Cath Surgery by going up through my leg/thigh up to my heart to make my own heart valve out of own tissue. Right now, that heart cath is in testing and has been in testing for about 5-6 years now. He also said that a couple years ago that I needed it when I was in my early 20's, but as of my last appointment with him I don't need to have it until my 30's or 40's. Hearing that was a HUGE relief from me and my parents. 

Just the fact that knowing that I have to have another heart surgery is a scary feeling. Every time I go in to see my cardiologist, I feel like when he comes in from all of my usual testings he is going to say "Due to the testing results, it looks like you will need another heart surgery. So let me tell you what's going to happen with the surgery and I will have someone come in to schedule a time for the surgery. Don't worry Shayla, it is not a 'you need to have it done right now', but you do need to have it. Just to be on the safe side." Now I know that will not be word-for-word of what he will say, but that just runs through my mind every time he comes back from looking over my results. 

Now I did mention "my usual testings". My usual testings include two testings, the first one they do is  an Electrocardiogram (EKG or ECG) that checks for problems with the electrical activity of your heart. It translates the heart's electrical activity into line tracings on paper. The second test is an Echocardiogram (echo) which is a type of an ultrasound test that uses high-pitched sound waves that are sent through a device called a transducer. The device pick ups echoes of the sound waves as they bounce off the different parts of your heart. Those are my usual testings that I do every time I go in to see my cardiologist just so he can see where I am at with my heart. 

Side note: I thought I would share with you a picture of what I looked like after my first open heart surgery. 

Below is a photo taken by my father of me (the baby) and my mother right after my first open surgery in the NICU.

Wondering Questions

Have you ever wondered what a daily life is like for a person who has a heart condition? Like do they take any medication to make them function or do they have to do wear something to make them to help them get through the day? To answer your questions, some do depending on the severity and what kind of heart condition they have.

For me, my condition is severe, because in all honesty, people who have this type of condition don't even make it to a certain age or they have a physical disability. Me, I got blessed. I am 19 going on 20 without taking any medication or wearing something to help me get through the day and I do not have a physical disability. You know, sometimes I wonder why? Like why am I the one who has to go through this everyday and live with it?  No one knows what it is like to be living with a heart disease and that is the whole point of this blog. Every blog I post is a little of what it is like for me living with one or something that is related to heart disease. 

If you think about it, you are probably wondering why I have not actually told you what it is like living with one or my personal story. To be honest, I am waiting. Why? Well, the only reason is that I want to get a little bit more information out about heart disease before I share my story. 

Ways to Keep Your Heart Healthy

Have you ever thought about "Oh, I'm going to start becoming healthy starting tomorrow." and them it's already tomorrow and you say the same thing over and over? Well, I have a solution to that! It is the Heart Healthy Testing. In order to keep your heart healthy, there are some on your own testings that you can do. Doing these tests often will help your heart, but will make you a much more healthier person.

The only thing that the test requires is to Know Your Numbers. What does that mean? What that means is that you need to know your Blood Pressure (#1), Waist Size (#2),  and Weight (#3). You are probably wondering why waist size is important. Well, to answer your question, if your waist size is half the size of your weight, then you are at risk of getting cardiovascular disease. So, grab your measuring tape and measure your waist!

Thank you! And I hope these tests will start making you want to become more healthier!

American Heart Association

So as you saw the video on my last post, I thought I would give you some more information on the American Heart Association if you have no idea what that is.

The American Heart Association is a national organization that lets everyone know the beauty of having a healthy heart. On there website that are multiple categories where you can learn more about anything heart related; fundraising, causes, research, CPR, volunteering, or even education. They also provide you statistics.

 I have been volunteering with the American Heart Association (AHA) for I think about nine years now. What started me volunteering for them was when I first became the Heart Child for them back in '06-'07. From there, that's when my volunteering started.

I encourage you to click the link below and explore this site. Who knows what you'll learn. 

http://www.heart.org/HEARTORG 

Below will be a map of the American Heart Associations that are close in the Midwest.
Locations of the American Heart Association near me 

Fun Heart Video

I'm guessing you are probably tired of reading, so below there is a YouTube video just showing how one can have a heart attack and not even know it. I hope you enjoy!!

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I hope you see the importance that any time of the day, you could be experiencing this. 

What I Am Suppose To Do vs. What I Actually Do

photo cred: google

Alright, so as you can tell from the blog post title that there are some things that I should be doing versus what I actually do. YIKES, my cardiologist will not be pleased with what I'm actually doing, because he gave me specific stuff to do to keep my heart healthy. When you think about it, doing all that stuff that he wants me to do is kind of hard when you're in college. I mean, I would choose watching Netflix over exercising or eating chocolate instead of an apple.

What my cardiologist told me to do: Eat healthy, drink 100 oz of water everyday, exercise everyday for at least 30 minutes, try to be active in daily life routines, get plenty of sleep as in 7-9 hours, and try to not stress my heart out to the max.

What I actually do:Eat whatever is in the fridge because a girl loves food, drink maybe 75 oz of water everyday with a little bit of pop here and there, I rather lay in bed and watch Netflix than exercise, my active daily life routines include walking to class that is right next door to where I live and walking to the bathroom, my sleep consists of maybe 4-5 hours because when you're in college who needs sleep, and stressing out my heart comes from being in college.

So there you have it, what I'm suppose to do vs. what I actually do. True definition of a college student haha.

My Condition

                                         

Photo cred: google

I was born with a Congenital Heart Defect, Critical Pulmonary Stenosis, Atrial Septic Defect (ASD),  and Hypo-Plastic Right Heart Syndrome. That's a lot of big words that you probably have no idea what those mean. Have no fear! I thought I would be nice and give you a brief, easy, and understanding description of what each of those mean. Trust me, I have a hard time knowing what they mean.  

#1: Congenital Heart Defect: which basically means that it changes the blood flow through my heart
#2: Critical Pulmonary Stenosis: is caused by Cyanosis (blueish color of the skin that is due to not enough oxygen in the blood and a malformation of the heart that doesn't allow the arterial system blood be fully oxygenated).
#3: Atrial Septic Defect (ASD): is a hole between my two upper chambers which the condition is present at birth (hint: congenital). 
#4: Hypo-Plastic Right Heart Syndrome:is where my right ventricle failed to grow and develop like it was suppose to be and it cannot allow the proper amount of blood pumped to my right atrium.  


I hope that helped a little bit. If it didn't help, I'm sorry. 

Welcome to Living with a Heart Disease

Hello! Welcome to my blog about Living with a Heart Disease. Now I know that all of you are thinking about "Oh my gosh! Is she okay?! How can she do it??" Well let me tell you, living with it is not easy and it is also not hard as well. With this blog, my goal is to share what it is like to have heart disease, the affects that it can cause, what can you do prevent it, how can you help, and other things along those lines.

 If you are a woman or have a friend/family member who has a heart disease and would like to know a little bit more about, this blog is the one for you. I will share my personal story as well as a few others.