Hello February!

If you all probably didn’t know, February is Heart Month! And no, I don’t mean the celebration of Valentines; that’s honestly the last thing on my mind. I actually mean National Heart Awareness Month. Which is a whole month when people are being made aware about matters of the heart: defects, problems, preventions or cures. Its always good to educate yourself about the “heart stuff” that yourself or someone you love is going through. Personally, I can handle using the term “heart defect” instead of “heart stuff” because I actually do have it. I’ve done years of doctors appointments and procedures, that I’ve been able to start collecting those little hospital bracelets.

I have never really told the public an in-depth explanation of my condition. To be honest, the doctors haven’t exactly been clear on that part either. I can draw you an anatomical picture of a heart and explain to you what’s going on with my blood flow and I can probably ace any cardiovascular anatomy exam because to be honest I haven’t stopped hearing about it ever since I’ve started developing an understanding.

My heart defect was diagnosed at birth, when I was apparently a “blue baby” and ever since then, I’ve just grown up with memories of going to all kinds of doctors and going through all sorts of procedures. Every single doctor I’ve seen, (even until adulthood) has without fail made the same exact reaction after listening to my heartbeat. It’s always this sort of amazement and bewilderment as if it was the first time anybody’s ever heard this sort of anomaly. I’ve pretty much been used to it at this point. I’ve had my grandparents and parents friends listen to my chest on weird occasions. It was like this little party trick, “Look at what my heart can do” then all of these strangers put their heads on my chest and become amazed by how different my heartbeat was compared to theirs.

I don’t think I can try to explain my condition to anybody at this point. To be quite honest, I think I might have developed trust issues with all my doctors because every single one I’ve had, have fallen short on making me feel better after every visit. Im not saying I need to be cured of what I have, but going to the doctors usually meant more questions rather than answers. 

So far this is what I know:

 

  1. I have CHD (Congenital Heart Defect) which means I’ve had it since birth. I don’t think its genetic because nobody in my family has the same condition as me.
  2. It’s Asymptomatic, which means I don’t experience the same symptoms as others with the same condition.
  3. There’s a hole in my heart; ASD (Atrial Septal Defect) or VSD (Ventricular Septal Defect) we may never find out. All my doctors still debate about it. But whichever one it is, it basically means, I don’t get enough oxygenated blood flow that distributes to my whole body.

It explains that I will never be physically able to do a lot of the things my peers are doing. I grew up cheering on the sidelines despite having quite a little passion for sports. I was so jealous of both my sisters for being athletes and all I could do was join the chess club.

I am not sharing this because I want you to feel bad for me. I don’t need anybody’s pity. Honestly, I don’t even think I struggle an ounce of what other people with CHD go through. I’ve known a couple different people who has gone through not just one, but multiple open-heart surgeries (some even as early as after birth.) I’ve read about people my age who can’t live the rest of their lives without medication or some kind of machine. Most of these people live with scars on their chests while I get insecure about a little cosmetic problem that may get fixed. Some people with CHD, do not survive their conditions. I sometimes feel as if I don’t have the right to cry about what I have, because I do have it easy compared to most of them, but they don’t need pity either. These people (and their parents) are some of the bravest and strongest people that I’ve known. Every single one of us is just living our lives with our CHD as an everyday part of it. 

Because my condition is asymptomatic, I’ve always been put to the side and deemed not too serious so honestly nobody has ever really given me much care until absolutely necessary. I sometimes forget that I have a heart condition, until something happens that reminds me that it’s still there. I’ve had my fair share of going to the Emergency Room on countless random times. There is no consistency in my “episodes” and there is no concrete reason, it just, happens.

I play off my symptoms most of the time because Id rather suffer in silence than get disappointed by another one of those “heart” doctors again. Funnily enough, I’ve never actually met one with a heart to care.

“I don’t know where you doctors lose your humanity, but you lose it. You know, if all of you at the beginning of your careers could get very sick and very scared for a while, you’d probably learn more from that than from anything else. You better start listening to your patients. They need to be heard. They need caring. They need compassion. They need attending to. You know, someday doctor Budd, you’re going to be on the other side of the table, and as angry as I am and as ANGRY as I always will be, I still wish you a better doctor than you were to me.”

– Dorothy Petrillo-Zbornak, The Golden Girls

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Freehand by Kevin Thiele (@artbythisguy) at Rockin’ Ink Tattoo, Las Vegas

In honor of Heart Awareness Month, and Congenital Heart Defect Awareness Week (February 7-14) I am making a promise to finally find myself a Cardiovascular Specialist in my area to meet with and give my history to. I want to actually make the effort of putting into action the words that I’ve just said up to this point. Heart Month, is not just sharing about my condition to make you guys “aware” of it, but also, really to try and take care of it. 

I will do my best to be honest with how I’m feeling, and accept how my doctors would react to it. I’m also not going to close my doors to all the doctors in the world. If I’m special enough to have a “1 in 100” heart condition, I’m sure there will at least be “1 in 100” doctors that will give me a chance.

If you have any idea of a compassionate Cardiologist in the Valley (Aspen, Colorado area) please let me know!

xx Gizel

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