Family

I love my family with all of my heart, but they can get more than over protective. Once they found out that I had a heart condition, everything has been with precaution. Which I totally understand, because I would do the same thing. But there's just something about them that I can't really quite understand.

We all know that parents who have children with some sort of health diagnosis are protective because they don't want anything to happen to their baby. Family is family. They are the ones who will be there for you, protect you, support you, and they will do anything for you. 

What's It Like Dating a Person Who Has a Heart Disease

I sometimes wonder what goes through my boyfriend's head when I talk about my health, because he knows everything about it. Well, I think everything. I know that he worries a lot. I wouldn't blame him. Everyday he has to live with that "what if" moment or "today's the day that something happen." That "something is going to happen" thought actually happened. In my previous blog about the experience I had with the ER, he went through that with me. The fear, the anticipation, the not knowing what was going on, I bet I scared the living hell out of him. I think I actually did, because he was asking me so many questions that I had no answer for and that just made it worse for him. It probably didn't help that my phone died on him as well... I can't image what was going through his head when my phone died.

As a boyfriend you have those thought of "Should I go see her?", "What would happen if I did?", "What would happen if I didn't?", "How would her parents be if I showed up?" The endless possible thoughts of what should I do in this matter of situation. He didn't come see me which was actually fine, because I had no idea what going to happen to me and I didn't want to drag him into my mess I was in with the whole hospital situation.

Dating someone who has a heart disease takes your relationship to another whole level .You now have to understand what people can and can't do in a relationship. There's quite a few things that I can't do that everybody else can do and he is completely okay with that. I don't think that he knows this, but parties actually cause myself to stress which makes my heart stress. I don't know why it causes me to stress, I mean its just people that I know at a house just having a good time. But too many people is too overwhelming. I think that's why. So him and I don't go to parties anymore. I know he likes to go out with his friends, but he chooses to stay in on a Friday night and eat Chinese food with me.

There are other things to list, but that'll be too long and will take forever to read. Just know that the key to dating someone who has a heart disease is compromising, understanding, and being supportive.

Sorority Related?

This is my sorority and my beloved sisters taken on Philanthropy night during recruitment 

How does sorority relate to heart disease? It is all about the philanthropy. Philanthropy is another word for an organization that Greek houses raise money for. Each Greek chapter has a specific philanthropy that they do fundraisers for during the school year.

I am a member of the Alpha Phi Upsilon fraternity. We call ourselves a fraternity, because we are the house who created the word "fraternity." Alpha Phi is all across the nation including in Canada. Our philanthropy is the Alpha Phi foundation and Women's Heart Disease. We are partners with the American Heart Association to help them with their annual Heart Gala, Heart Walk, and the Go Red for Women's Luncheon.

In 2013-2014, I was the Director of Philanthropy which means that I was in charge of all the fundraiser events. My team and I plus the girls in the sorority raised $5,000 in one week. That is really good for a house of 70 girls. Usually we would raise less than $2,500. From raising all of that money, we got an award from our university and from Alpha Phi International.

Here's a video of when I was Director of Philanthropy. You'll get a chance to see what I look like. I'm the last person and my name is Shayla. I hope you understand that this happens everywhere and it hits home to my sorority sisters and myself. 

So there are other organizations out there who are helping to raise money to try and find a cure. From the Alpha Phi's internationally, they have helped researches to create new technology to help with heart disease. If it wasn't for Alpha Phi, I wouldn't be here today. 

My Experience with the ER

There are so many parts to living with a heart disease. It would honestly take me forever to write because I would have to do everything in my life and that is basically the last 20 years... Well, it would be the last 20 years. Life is crazy if you think about it. I mean I go to so many doctors, so many appointments, you would think that my life would be taken over.

As of now, I look and feel healthy, but inside I know that I am not. I now have to carry a little heart monitor for when I feel a double beat. I'm being tested for a double heart beat. They happen every so often and they don't last long. In January around when school started back up, for the whole week I had felt this massive pain and tightening in my chest that so happened to be a double heart beat. Some of those "episodes" would last 30 seconds to 10 minutes. I knew something was wrong with my body, because I can feel it.The worst one was on Wednesday. It started in the morning around 7:30 am and from there it went down hill. I remember making a sound like I was being suffocated in class. Then work came, around 4 pm it got to the point that the episodes was happening back to back. One of them happened when I was walking back from the restroom, it made both of my legs weak and I collapsed. Thank goodness I did it by a chair otherwise I would have been lying on the cold ground. By the time I got to the ER with my mom, I couldn't feel anything in my body. I went completely numb from my head to my toes. My mother tried pinching my fingers, nothing, the nurse poked my finger, and still I felt nothing.

After waiting for 15 minutes to get back to do an EKG, my body was still numb. Like I had some feeling coming back, but I sure couldn't walk. THEN, oh man this made me really really mad, I WAITED FOR 3 HOURS TO GET A ROOM. I am a person who has a heart condition who was having some massive heart pain and all they did was nothing. Now I don't know what it's like on the other side, but all I know is that people who came in after me were getting rooms before me. Usually it is first come, first serve, right? Oh man, my mother was livid. She called whoever was in charge of the hospital in the evening time and told the gal what was going on. I got called back as soon as my mother got off the phone with her. By that time, I had my feelings back in body and my episodes went down.

I was in the hospital for almost 20 hours trying to figure what in the world was going on with me. they didn't know. No one knows what's wrong with me. All they can do is to believe me with what I'm saying and feeling.

Living with a Heart Disease part 2

So that last post about living with a heart disease was long. I know, imagine typing that that was even harder. I don't know how long this will be, but I will try to make it not as long as the last post.

You would think that I would have some requirements that I am suppose to do. In all honesty, I do, but I really don't follow them. *GASP* Actually, I do follow them, but not in the order that I am suppose to. I mean there is drink water, exercise, to this and to do that. It is hard to actually keep up with myself. I'm a college student, so everyday I get up at a decent time to be ready for class, I go to class, and then I go to work. I work two jobs. It may sound like I can handle it, but I really can't. With my heart condition it adds more stress than I actually need. 

Everyday I live with stress. Stress from worrying about family, friends, the relationships I have with people, and the biggest one is schoolwork. Now everyone has stress, it's a human nature to naturally have stress. That's how we live. But is having too much stress too stressful? To answer that question, YES. With my condition, I worry about my condition which makes me stress about if I'm doing everything I can to make sure that I am not worried about it and it just keeps adding up. I try not to think about worrying about my condition that will cause myself to stress, because if I stress too much then that'll make my heart stressful and the cardiologist does not want that to happen.

Stress. The word that we live with, the word that we wish we didn't have, the word that will forever always be in our vocabulary everyday. The state of mental or emotional strain or tension resulting from adverse or very demanding circumstances. Having stress causes too much stress that will probably not go away, but it can lower the level of the stress. Let me admit something here, I think that from having too much stress that's causing me to stress more is making my health not so good. I guess, we'll see if it is. 

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.