Tuesday, August 14, 2012

It's Not Just Kids

I guess I just don't fit in. I mean I fit in to a point but then I just...don't. 
Maybe because I'm an adult. Parents see me and are like
 'oh she was born with a CHD and made it, she's done, she's beat this.' 
Like now that I'm an adult I'm done with this. It's only children fighting CHD after all.

Can I just call a bullshit? I'm tired of parents acting all high and mighty like its only their child dealing with this crap. Well guess what, its not!

Let me say, yes I know right now some kids are going through hell. I'm not trying to belittle their journey, just like I wish some parents wouldn't belittle mine.  I was once like your child. I had my first surgery at 2 days old. I've been in an out of heart failure, I almost died 3 times during my fontan. I've had seizures and I've been in a 2 week coma. I've been through hell too. My last surgery was when I was 19 because I was in severe heart failure and could die any moment. 19 - not a child. 

My cardiologist told my this journey will end in a heart transplant. Not that that's really an end or a cure, its just the beginning of another journey. 

I just felt the need to get that out. I at times feel I need to just leave the CHD world. I was happier when I wasn't in it. I've made some friends, but they usually leave me for another CHD parent because they "understand better." Or they leave me because I "bitch and moan" to much. Because they are doing good and don't want to know what not doing good looks like.

I get it, I'm sorry I speak the truth. I should try and make everything seem like sunshine and daisies.
And I know I'll probably offend someone with this post. Guess what, I DON'T CARE.

Sunday, August 12, 2012

The hurt.

So I  finally got my groove back. I'm in the mood to write. I'm not sure what exactly this post will be about. I guess whatever comes to my mind. 

So those who follow me on Facebook, and if you don't and want to go here. Well anyways if you follow me you know I am now the proud (ha) temporary owner of a 30 day event monitor.
This thing is so freaking itchy. It doesn't help that I'm allergic to the damn stickies. 
What really  bugs me is how much it recorded the first day. I mean yes, it was good that it was catching my arrhythmia's but what annoyed me, was I wasn't feeling any of them! I have a lot of arrhythmia's and I thought I felt them all. To find out I don't and that I have a lot more then I ever thought, its creepy! It's disheartening.
And I swear its trying to give me a heart attack. It use to make a little beep to let me know it was recording. But when the company made me take out the battery (and we lost 7 recordings.. don't get me started on how pissed off that makes me) it stopped doing that. So now I have no idea when its recording, because it records what I don't feel. Yet doesn't record what I do feel and I have to press the stupid little button. But anyways, I don't know its recording so I move and it makes freaking high pitched noise that sounds like dial up internet. Which is just lovely when it happens in public. 

So I have this monitor so my doctors can finally see what exactly is going on, because the stupid pacemaker doesn't want to do its job! Good thing I'm not paying the bastard. Anyways maybe they will finally listen to me when I tell them I go tachy (tachycardia - fast heart beat) when I brush my teeth,  or do the dishes or just walk a little to fast. Which isn't normal. Maybe they will finally do something about it. What sucks though is if they do have to replace the pacemaker lead they will most likely have to crack my chest again. They told me they usually go in through a vein in the neck which takes it to the heart. Well with how effed up my heart is and how they rerouted it during surgery, the vein would take it to my lungs NOT my heart. And well we just don't want to pace my lungs.

With all this going on I've just been really angry. My pacemaker is only 3 years old!! It was suppose to last longer then this dammit! And part of me thinks that when I go back on September 5th they will tell me I do need surgery, just not the surgery we expected. To be honest I have a feeling they will say its time for transplant. And well, if I'm going to be brutally honest, I'd much rather transplant. I've had nothing but issues with my heart and pacemaker since surgery 3 years ago. I'm so done with this. I want my new perfectly whole heart. I just want to feel better! I want to be able to run, I want to chase my nephew. I'm ready to start that next journey. And yes I know its not all sunshine and roses. I know its a long hard process. I know there is a lot of pills and biopsies and rejection. I get it, but the journey I'm on right now isn't easy either.

And you know what I'm so tired of going to Salt Lake City so much. I'd just love three whole months where I don't go! I went from July 31st- August 3, I have go back down on August 27th and then back again on September 5. Please tell me that's the last time for this year!  

Though this last trip was fun. We did a CHD play group in the park. 
I met Jacob, Tanner, Jaret, Cooper, Elaina, Shiloh, Matthew and Kenzen. 
And their families of course. Goodness I love these kids. 

I also went to Primary Children's Medical Center and met 3 kids waiting for new hearts.
Kaidence got a flu when she was a baby that attacked her heart, Viral Cardiomyopathy and had a heart transplant. She developed post transplant coronary artery disease and is now waiting for another new heart.
Matthew was born with HRHS and had a heart transplant. He also developed post transplant coronary artery disease and is waiting for another new heart. 

Kylie was born with HLHS and had all three surgeries but developed heart failure and is waiting for a new heart. Or as she calls it a 'Lub-a-dub'

Those kids are amazing and one of the reasons I think everyone should be an organ donor. 

So anyways since I've been home nothing much new has happened. Except this damn monitor recording. The more recordings we can get the better. But honestly this thing is a pain in my ass. And let me just tell you there are a lot of rude people who like to stare. Its summer so of course I wear take tops and what not and its visible. I understand people looking, but what gets me are the ones who look, look away, then look back many times. If your that curious ask me about it dammit! I haven't talked to too many people because either they are just annoying or I don't want to bring them down with my angry bad mood.

I didn't even call or text my best friend about my heart monitor. I didn't want to worry her until I knew what was going on. But she's smart and she reads Facebook, so she figured out things where wrong. I woke up a few days ago to a text message asking if I was going to be okay. I said I'd be fine. She then said do you promise? I cant live without my best friend. Something along those lines. We may go months without seeing each other, or even talking. But when we do get together again, its like no time has passed at all. That's how best friends are. I hate how much this hurts her too. 
CHD doesn't just effect the person and their family. It effects their friends to. Before my last surgery she called me crying begging me not to die. And I promised her I wouldn't. 

This sucks, I know I'm hurting people. Yes I know I have no control over this and I know I'm not doing this on purpose. But I hate how much this hurts people. How scared they get. Me, I'm not scared. Not this time. been there done this. I'm not worried, I just want to feel better. 
Is that really to much to ask?