I'm new to this kind of stuff so i really don't know where or how to begin. I've never really talked about any of the stuff that i've had to deal with in my life but i decided that now would be a good time since i sometimes feel like i am going crazy........ SO THIS IS ME JUST VENTING BEFORE I'M DIAGNOSED MENTALLY UNSTABLE!!!!!!!!!
I am a 26 year old female who was born with a congenital heart disease. To be quite honest i don't exactly remember or know how to pronounce the name for it. All i know is that i was 2 weeks old when i had to go in for heart surgery the first time because my aortic valve was closed up. That was the first time. Growing up, i guess from an outsiders point of view it was a pretty normal childhood, was normal in certain ways. What most people take for granted what their kids can do but don't, well i didn't have that option. The only normal activity i was allowed to do by my over protective parents was bike riding. So most of the time my coordination is off lol!!!!!
Growing up i had alot of migraines which were never explained.. Go figure.... Well long story short i was ok on just yearly exams with my cardiologist up until i was 11. I had to go in for an aortic valve replacement. They did that by taking a piece of my pulmanory valve and putting a tissue valve in it's place. I guess something went wrong or it just goes with the territory but i ended up having to need a pacemaker. Six months later my body didn't quite agree with what they put in so the valve became leaky and i needed a new one. Fun stuff let me tell you for a 12 year old. Well to say the least my parents did the best they could handling a situation like that but i got the short end of the stick. I ended up having to repeat 6th grade. So i was labeled the idiot with a heart problem for a lil while. Wow kids can be mean!!
I always knew that eventually it would have to happen again but i'm pretty good with denial when it comes to that stuff. So for the last 2 years i've been pretending that nothing when was wrong with my heart again when i had all the symptoms. For instance feeling really tired all the time, palpatations, shortness of breath, blurry vision, migraines and the best one of all was feeling like i was going to crap my pants every five minutes. This was not fun to say the least. So i eventually gave in and went in for my the millionth cardiac catheter so they can find what i already knew what was wrong.
I had 10 hour heart surgery again this year in Aug. to replace my aortic valve along with my pulmonary valve and to replace my pacemaker.
I guess the point of me saying all of this is that things feel and seem alot different now when you're a 26 year old woman with different kinds of stress and responsibilities than it does when you're 11 and 12 where mostly mom is taking care of you. Also now i really don't have anyone to talk about it with who understands where i'm coming from. So it sucks sometimes.
This time around was super hard and still is cause i'm still recovering. Emotionally, physically, financially....
Probably sounds like i'm complaining to most readers, which i guess i am, but i figured why the hell not. I know there are people who are worse off than i am but in my world it really doesn't make it any better.
I'm trying really hard to get by gracefully though.
I thank God everyday that i am here though. I really don't know what my purpose is being here but i think i have an idea. I have a 6 year old niece who was also born with a heart condition; tricuspid artresia and transposition of the great arterys. She just had surgery two months ago. So ontop of my stuff i see her suffer with it too. All i can think about is how hard it's going to be for her and how hard it is for her already.
The other day she told me "titi i wish that one day your heart and my heart isn't broken anymore".....
That just broke my heart. I think in the great scheme of things if the Man upstairs knew she was going to get here with such a big problem, he probably put me here before so i can help her deal. I'm so totally ok with that!!!!!!!!!
I guess that's it for now.
P.S. I am a happy person just a really frustrated one right now.....
Thanks for taking time to have read this super long complaint of my what my life is.