Tuesday, December 18, 2012

Another open letter to Shaun White

Dear Shaun White,

I know a heart mom sent you an open letter earlier today. I want to say I understand exactly where she is coming from. I even shared the letter on my personal facebook page. She wanted you to spread CHD awareness, because you were born with a CHD. I understand exactly what she wants. I understand why she wants it. For I too was born with a congenital heart defect. I too am living with half a heart. I understand the complications from this life and I understand the stress. I understand we don't have enough awareness. I understand the want and need for more awareness and for big names like you to help us in our cause, your cause. But I felt the need to say, I understand you too. 

I can understand you not wanting to be apart of the CHD community. I understand you not wanting to show the part of you that you just cant control. I know what it feels like to not have any control over you body. And to desperately want and need to have control over your body. So you ignore your CHD. I know what its like to have a scar, a scar you'll never get rid of. I know what its like to wish you didn't have to take those meds and  wishing you never saw your cardiologist again. I get it, I really do. I choose to be apart of the CHD community. I love it. I love these kids and I'm glad of my choice. But I understand that you don't want to make the same decision.

I also understand that maybe, someone in your life that we just don't know about might be fighting childhood cancer. So instead of supporting CHD awareness, you support childhood cancer awareness. I get it, childhood cancer awareness is important too. My dad died of cancer, so I support cancer awareness also. 

I also understand that maybe, possibly, you know that so much has been done for you that you want to give back. But maybe you just don't know how to give back. Maybe you possibly don't know what CHD is. You see, I didn't know what CHD was until I was told I needed another life saving open heart surgery at 19. 

So you see Shaun, I understand that you might possibly have reasons that not everyone would understand. I want to say I do wish you could help us in or cause. But if you don't I wont ever hold it against you, because I understand. Maybe the reasons I listed aren't your exact reasons. But I'm sure you have one. 

I also want to say I know the heart mom who wrote the first letter. I want her to know I agree with her. I wish we could get more CHD awareness. And I hope she doesn't take this wrong. I just felt the need to point out there might be reasons behind your decision. Good reasons, I know what it is like for people to question my decisions. I'm sure you have much more of that then I ever have. You're famous after all. 

I just felt drawn to writing this. I just couldn't let it be. 

Tuesday, October 2, 2012

Born With A Broken Heart

I was asked by Annette, found of Born With A Broken Heart to share my story. I need a place to write it, and since Microsoft is being bitchy, I thought I'd write it here. 

My name is Jessica, but I prefer Jessi. I'm 23 years old and I am surviving CHD.  I was born October 3rd 1989. I asked my mom a lot of questions about her pregnancy and delivery with me. It was a normal pregnancy, no problems what so ever. But now looking back she remembers her doctors would always listen to my a heart beat a little longer then normal. Maybe they heard something, but it 1989 and they didn't have great technology back then. Labor and delivery where normal and I was born in the early morning. Shortly before discharge my mom was trying to nurse me and I just wouldn't wake up and eat. The nurses told her she just didn't know what she was doing, but I have an older brother, she knew how to nurse. So the doctors to me away and managed to wake me up enough so I would cry. I turned blue. My mom knew something was wrong when the doctors and nurses came back without me. They told her I had a heart problem, it wasn't anything serious, probably just mitral valve prolapse and I'd be fine. I got my first ambulance right before I was even 24 hours old. When my mom finally got discharged her and my dad came to see me, and what awaited them was a much worse diagnosis. I have Tricuspid Atresia, Severe Hypoplastic Right Ventricle, Mitral Regurgitation and a VSD and an ASD. My parents where told the ASD and VSD were the only reasons I survived my birth. I had my first surgery, via cardiac catherization at 2 day old. A balloon septostomy to make my ASD and VSD bigger so the blood would continue to flow. I got to go home a week after my birth and did okay until I was 3 months old. That's when they had to do my first BT shunt. At 9 months old I needed another BT shunt. Both where done through my back and I have scars underneath each shoulder blade. At 1 1/2 I had my first open heart surgery. I went in on mothers day and got out on fathers day. They did the glenn, but it failed and they couldn't get me off bypass. So they did another procedure (this one I don't know the name of) and again, they couldn't get me off bypass. My heart just wouldn't beat. They had one more option but they weren't sure if it would work, it was so new. But it was all they had left, so they did the fontan. Luckily it worked and they finally got my heart to beat. But a 4 hour surgery turned into a 12 hour surgery. Because I was on bypass for so long there was swelling in my brain and I had a massive seizure and was in a coma for 2 weeks. Recovery was hard, but I made it. After that I had cardiology appointments once a year and daily medications. I had a lot of issues with pneumonia and my parents had to buy their own nebulizer to keep me out of the hospital. I got sick easier then "normal" kids and I got tired faster, but I had a normal childhood. A good childhood. When I was 18 I was told I had severe heart failure and needed another open heart surgery. I had a cardiac cath in preparation and a lot of appointments where it was found out I had sinus bradycardia and atrial fibrillation. They also discovered my heart was dilated and up against my breast bone. It caused me severe pain. I was terribly sick and my doctor got me in for surgery really fast. July 24, 2009 I had the fontan revision, maze procedure to fix my atrial fibrillation, atrial reduction (they removed part of my atrium) and a pacemaker implant to help the sinus bradycardia. Its been a crazy 3 years since my last surgery. I was in a car accident in November 2010 and was told the only reason I survived it was because my pacemaker kept my heart going. The maze procedure failed and my atrial fibrillation came back about 2 months afterwards. I had a cardioversion in September 2011and we are watching it again and if it gets bad again we will try an ablation. It's now called chronic atrail fibrillation. At my last appointment my doctor told me I have the best ventricle function post fontan out of everyone he see's in his clinic, and I'm quite happy about that. I've been diagnosed with an auto immune disease and I'm in a lot of pain, but I try to keep going. There has been issues with my pacemaker and they will most likely need to replace the leads, if not the whole thing. Which means they would need to crack my chest again. But as of right now we are just watching it. He doesn't want to do surgery just yet but is pretty sure it will need to be done. My cardiologist says it's just a matter of time before the heart failure comes back and I'll need a transplant. But I'm taking it one day at a time. I'm enjoying my life. I'm in college to get my degree in early childhood education. I love kids and want to work with them. I'm trying to get disability because as much as I'd love to work I know I can only do it part time. I love meeting new CHD families and go to visit children in the hospital whenever I go for my appointments. I also love meeting them outside of the hospital too. I've been told I give them hope and I am proud of that. They help me feel not alone. I'm enjoying being an aunty and being in school. I love my life and am thankful for the doctors who gave me a chance to live it.

Monday, September 10, 2012

We're Not There Yet.

A week in Salt Lake City!? What was I thinking?
In all honesty, it wasn't horrible. We (my mom and I) came down on the 4th the day before my cardiology appointment.  Which was great because that night was a fundraiser for my heart brother Cooper! It was great to go a see him again and show my support.
-Cooper and I in August- 

September 5th was my appointment. I went and got an echo and saw my cardiologist. It went really well besides having to lay in an uncomfortable position for almost the whole time. But we got some great news. My cardiologist  told me I have the best ventricle function post fontan out of all of the patients he see's in his clinic! Yay go me! I don't have to go back for another eight, yes you read that right EIGHT months!!! It took me so long (3 years!) to get to finally being able to go every 6 months and now its eight!

After that we got a few days to relax. A vacation for sorts. My friend, a heart momma, did my nails!
-Beautiful thanks Ali!-

I actually spent a lot of time with her and her awesome son this trip so it was great.
 -Her awesome heart hero Tanner- 

I of course had to go up to Primary Children's and see my amazing heart brother and sister who are there waiting for new hearts. Matthew and Kylie. It was great fun, Matthew and I had a huge battle with agent P. He beheaded me, so of course he won!
-Matthew and I-

Kylie was such a cutie as always. Playing doctor and smelling books. She even let me sniff her book also! She was taken to the CICU recently and needs many prayers. 
-Kylie and I-

I even went to my very first heart walk! It was great fun! My mom even got some amazing heart mom shirts!
-First Generation (as I call her) heart mom and damn proud!-

I do got to say probably one of my favorite parts of the trip was last night. I went to dinner with  4 heart moms and there kids. Kaylyn and her beautiful 8 week old Bailey and Bailey's sister Mckenzie, Jessica and her adorable 6 month old Clara, Ali and Tanner, and Hollie and her dear daughter Elaina. It was so fun, full of food, fun, laughs and a lot of support, love, and understanding. 

I really love my heart family, even though there is a lot of heart ache, there is also a bunch of love. Well today was the big appointment. The one where I find out if I need surgery.  We started out the day shopping and got ourselves a little confused and showed up to the office about 10 minutes late. They took us back really fast, did the vitals and the pacer interrogation started.
I asked him to look and see if there was any recorded events from Friday night. The night I had 20 minute episode of severe pressure/pain in my chest and jaw. Something that has been happening more and more recently. Nope nothing. It showed a 30 second arrhythmia around 6:30 pm but nothing at 10pm the time of the episode. 

And that's when I knew the appointment wasn't going to go very well. The guy took about an hour to interrogate the pacemaker. He did it said were done, unhooked me and walked out of the room. But then came back and said he needed more. He then unhooked me again and a few minutes late 'oh wait I forgot to ___' 

But finally he got it all. And that's when the doctor finally came in. He told me they had to change the pacemaker settings, AGAIN! Seriously?! They've changed it at every single visit since last September! What the heck is going on? The lead that they thought wasn't sensing seems to be sensing a bit more. There was 19 recordings on the pacemaker. At the moment he says since my arrhythmia's dont last to long, he doesn't want to do anything about them. He doesn't want to add any drugs and risk putting to much stress on my liver and kidneys. And since my heart anatomy is so weird an ablation is hard to do, so he doesn't want to try when they aren't lasting long. As of right now, he doesn't want to crack my chest to replace the lead. Not yet, but it will probably end up needing to be done eventually. When? Not sure. But we just aren't there yet. 

I talked to him about my severe chest pain. I told him how when I was in the ER they gave me drugs to stop my heart, and how the chest pain I've been having feels exactly like that. It's a terrible pain. So much pressure in my chest and just horrible horrible pain in my jaw. It's unbelievable. He said he doesn't think its heart related, and I'm not old enough to have angina. He thinks it might be an esophagus problem. WHAT!? How can severe chest pain like that be an esophagus problem? 

As we all know I have really bad trust issues with doctors. I'm trying to trust him on this but it's just really hard. He said he will talk to my cardiologist and see what he wants. So its up to Dr Green whether to order more heart tests or get me a prescription for the esophagus problem. I'm really trying to trust them. I know they will do what they think is best for me. And I will try it, and see how it goes. I just have issues. I want to trust them fully. I don't want to have any doubt it my mind. But my doctors before ruined that for me. 
I'm learning to trust again. I'm just not fully there yet.

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?

Tuesday, July 17, 2012

Random Thoughts - Why We Need to Live in a World With Supernatural Beings.

What would happen if I became a vampire?

I can tell you I would finally not be sick. I wouldn't hurt, I wouldn't get out of breath, my heart would heal, then stop beating all together, if you follow the twilight theory. 
If you think of the True Blood theory, I could just drink some V juice (vampire blood) and my heart would heal! And I would get a nice little high. My senses would be better too.  Like in the second episode of True Blood, I would be able to smell even the tiniest piece of moldy cheese. And brighter hair, if you follow the book.  But again my heart would be healed.

And what would happen to my pacemaker? My mom and I discussed this today while watching Breaking Dawn. We both agree that it would probably be pushed out my chest and then my chest would heal. 

What about Harry Potter?

I'm sure no one but myself has thought of this, because I cant imagine anyone being as weird as I. But, what happens if a a magical family has a kid with a CHD? Or any other illness for that matter?  Can they heal them right away? They can mend broken bones, or even grow them back with a potion. So can they heal a broken heart? 

 I'm sure they probably could. 

If you turned into a vampire, you would have to give up certain things. Sleep, eating food. You'd have to get use to hunting and drinking blood. Again that is if it was the twilight version. True Blood would be nicer. 

And what about being a witch/wizard like in Harry Potter? How cool would that be? Being able to do magic? Being able to heal right away? AWESOME! 

 LOL- Anyways this is just my random thoughts for today that came to my mind while watching Breaking Dawn. 

I know it will never happen, but I still think it would be cool to live in a world with supernatural beings.

Sunday, July 15, 2012

Life List.

-- I renamed this post at the suggestion of a reader. Bucket List is a list of things to do before you die. I am not dying, I am living! Good Idea Sasha thank you!--

I've been asked many times if I had a bucket list. It's been the topic of many discussions in CHD groups I belong to so I thought I'd make one. 

1- Go to Egypt and explore the pyramids. 
I've loved Egypt since I did a project about mummies in 6th grade. In 7th grade I took an ancient history class and learned more about Egypt. It would be a dream come true to see the pyramids in person. 

2-Pet a Shark
Or at least see one up close and personal. I love sharks! Jaws use to be my favorite movie when I was in preschool. I was so sad when my cardiologist told me I cant learn to scuba dive. Which means no going down in on of those cages to see one :(

3- Get Published
I love writing and I have a story simmering in my head that I think could be great. I just can never get the words out. I can't sit still long enough to finish the story. But one day, maybe many years from now, I'll finish it.

4- Get Married
Well, I always thought I'd never get married. I'm honestly not sure I want to get married. I don't believe in divorce and I'd never want to be trapped.  But I do want to be in a loving long term relationship.  My therapist said marriage would be good for me. Ya never know.

5- Be a Mommy
I love kids! Always have, always will!

6- Graduate College
Its so gonna happen!

7- Meet as many CHD warriors as possible
I love them!

8- Move out of Idaho
yeah I know, small beans to some, but I HATE Idaho. It'll be great to move out and live on my own.

9- Read all the Books on My Bookshelf
Seriously I love reading, but I just keep buying more books. The unreads are stacking up.

If you're my Facebook friend, or no me even just a little bit, you know I'm in love with Johnny! This bucket list item may never happen but I can dream right?
So Hot!
So Talented!
He'd love me, I'm all sorts of damaged!

Thursday, July 12, 2012

July 12 - A little about my grandma

July 2009 has been on my mind a lot lately. As you very well can tell by my last few post. It was a really tough time in my life, July 2009. 
I remember July 12, 2009 pretty well. We were still in Salt Lake City, my cardiologist was trying to get me back in with the Primary Children's. I really didn't want him to, I also knew he probably couldn't so we were enjoying a short vacation of sorts. 
It was my grandma's birthday and we drove all over town to find an ice cream place to get her ice cream since we couldn't have cake or any sort of celebration. We even went to Olive Garden for her dinner. My first time there, EVER!

Anyways, I want to share with you a little about my Grandma Anna. 
Me and her, we but heads, a lot, but we still love each other. We have a good relationship and she's been nothing but a great grand mother to me. And to all her grand kids (she has 9) and to her great grand kids (she has 12). She dropped everything when my mom asked her to come to Utah for my surgery. My mom didn't want to sit and wait alone. She dropped everything again to come to Spokane when I actually had surgery. Then again to come with us to Boise when I was going to need a cardioversion. 
She's been a great support to me, and my family. 
Happy 72nd Birthday Grandma

Her and I when I was 11 months old. This is the only pictures I can find of her and I via my facebook. This isn't my computer so I'm severely lacking on the photo front.

Monday, July 9, 2012

The best way to celebrate

I wasn't sure how I wanted to celebrate today, or if I even wanted to celebrate it at all.
Do you really want to celebrate the milestone of the day you where told you where going to die? Yes, I made it to the half way mark. Past the halfway mark actually. Three years ago I was in such bad shape we didn't know if I would even make it three days let alone three years. 

To be honest, the only way I wanted to "celebrate" this day is to go back to the doctors and say to them:
"HA! Look at me now! You gave up on me, but others did not!"

But I know that really isn't the right thing to do, but still at times, I just wish I could go throw it in their faces.

But anyways I woke up this morning deciding not to celebrate, it was just going to be another day. I just decided on saving the celebration for the 3 year surgery anniversary. 

But I think God decided otherwise.

Even though it was a bad pain day, and I had to start my art reading for school, it really was a good day. 

I woke and shortly after I got my first "gift"
A little girls smile.
Let me introduce you to Mady. 

Mady is a 2 year old, who will be turning 3 in the beginning of August! Mady has Hypoplastic Left Heart Syndrome, she only had a 25% chance of surviving  at birth. Mady pulled through and is beating the odds one heart beat at a time. Mady's mom created a facebook event asking for birthday cards for Mady. I decided she needed a little gift also, and after talking to her mom, I found out she loves to color, but didn't have any coloring books. So I went to the dollar store and got her 3 coloring books and a card. Her gift arrived today. Yes, its early, but I'm very forgetful  so I did it early so I wouldn't forget, which I knew I would.  

Anyway, her mom took pictures  and posted them on facebook for everyone to see. Her smile brightened my day. How can making a little girl happy not make you happy? 

 Mady's mom asked her if she wanted to open a gift, and of course she did!
 Tearing right into it
 Her mom told me she hadn't stopped coloring since she opened it. 

My text message went off while I was looking at the pictures but I forgot about it until about half an hour later. It was my sister-in-law asking me if I could sit with the kids for a few minutes. I went right over and she was already gone and my mom was sitting with the kids. But my mom had just gotten off of work from a grave yard shift and needed to go home to rest. So I sat with the kids. 

This was my second gift. While I was sitting with the kids, and when I went over to their house later in the evening, Chase was all about the kisses.
I was there for a combined total of no longer then 20 minutes and got about 8 kisses. That he gave willingly!

 My mom asked him to hand me a $20 so I could go get lunch and he was so good at it she decided to give him a dollar for himself. He thought he was suppose to hand it to me.
Once he realized he could keep the dollar he was all over it. He wouldn't put it down even while watching Alvin or sharing a milkshake with grandma. 

Those kisses from Chase, Mady's beautiful smile, they made my day great. 
I am so greatful to have made it these three years.
I'm so greatful for day's like this.  


The Day I was told I was dying.

Three years ago today. Well okay, tomorrow. I'm writing this on Sunday night. Words just come to my mind and I need to write them down before I lose them. But I'll be posting this sometime Monday.

July 9, 2009
I was sitting in a Primary Children's Medical Center exam room waiting to see the cardiologist. I had just had a bunch of blood work, an EKG and two echo's. I had also talked to the surgeon who was suppose to do my surgery the next day. Things really didn't go as planned there. I yelled, and ran from the room. Which led to a fight with my family as well.  I was going a little over board because I was so upset. My brother made a good point. 

He said to me "You're sick yes, but you're not the sickest one here"

Which brought be back down to earth, yes, I wasn't the sickest one here. 

Anyways we were in the exam room, and I was wiping away the remaining tears. Waiting.  The doctor came in and began to tell me how sick I was. The words "severe heart failure" and "drop dead" where tossed around. In the end, she told me I only had 5 years to live without surgery. And they wouldn't do it. She told me I couldn't call my surgeon and jackass and expect him to still do my surgery.

My brother stormed out of the room looking like he might punch someone. I began to argue I think I said something like "So you're gonna let me die?"  But my mother asked me to leave the room, go calm Dan down. So I left the room, not really wanting to, I was angry and wanted to give her a piece of my mind. But I left. 

As we were walking to the car, or well storming to the car afterward my mother told me that they gave a few more reasons after I left. She told my mom they where terrified I would have a mental break after surgery. They where scared I wouldn't follow the rules and take my medication.

Yes I know I have a temper (this was before I knew about my borderline personality disorder) and I knew I had bipolar disorder, but what did they see in me that scared them of a mental break. Was I really that bad?
And yes I knew there was a point in time where I gave up on taking my medicine. All I wanted was to be normal. But I was really sick now, and I know that me stopping them is what caused my heart failure. I know I was the reason I was dying. I would NEVER make that mistake again. EVER.

So we got to the car and were driving back to our hotel and I remember trying to call my cardiologist back home in Boise. But since I was out of state it had to have the 1 in front of it, so I looked at the number and repeated it, over and over in my head. I dialed and waited for an answer. I didn't even hear what the person said when they answered, I just began my tear-filled ramble. I went on and on telling him what happened, all while bawling my eyes out. When I finally finished In took a deep breath.

The guy on the other end who was quite patient and listened to my whole speech finally spoke.
"Okay what do you want me to do about that? This is ___ (I don't know some guy) at some plumbers place."

I accidentally miss dialed and called the plumber.
"Oh I'm sorry" and hung up. 

We got the laugh we all so desperately needed. Poor dude had to listen to some crying chick. I apologize to whoever he is. We went back to the hotel and made a few calls. I called my best friend, or it might have been texting. Either way she talked to me, called them names with me. Agreed that it was discrimination. She made me feel better. That's what best friends are for right?

I got on Facebook and "met" Ramona. Most of you know about Ramona and how she helped save my life. But if you don't read it here. My cardiologist finally called, I refused to try calling again, I didn't want to call another plumber. But either way he was told what was going on. He told me to stay in Salt Lake a few more days while he tried to smooth things over. When he couldn't smooth things over he got me set up with a surgeon in Spokane Washington and begged me to not call him a jackass. 

July 8, 2012
Tomorrow it's 3 years since that day and so many things have changed.

Like my doctor asked me to, I did not call the new surgeon a jackass. Me calling the surgeon at primary's a jackass actually turned out to be a good thing. It saved my life. Read how it saved my life here. 
My surgery was done two weeks after the doctors at primary's told me I was dying and they refused to do surgery. I was in pretty bad shape and though my cardiologist told me it wasn't anything that need to be rushed, he got me into surgery pretty fast.

 It went really well. The only issues I had where plurell effusions that just kept coming back until they finally got the right dose of lasix. I lost 19lbs of water in 2 days when the finally figured it out. They paralyzed my vocal cords and everyone joked about how excited they where that I couldn't talk. But I talked so much it came back much faster then anyone thought. They also cut a nerve in my leg when going in with the heart lung machine. When I woke up my leg/crotch area was so unbelievably swollen and painful. But they got my pain controlled well and shortly the only time it hurt was when I tried walking. And it would shake so bad. But it went away fast. 

I've learned so much about life these past three years. I've learned that I did need help and it was okay to ask for it. It wasn't a sign of weakness, it was a sign of pure strength. To admit there was a problem and get help it was a good thing and changed my life. I got on anti-depressants and anxiety medications. I would stay on them long enough to get better. But then I thought I was fine and would quit them. Finally I started seeing a therapist regularly and taking my pills daily. I learned stopping them just made things worse. I got my diagnosis of Borderline Personality Disorder, along with my Bipolar. Also possible ADHD.  It's really changed my life. I'm happier now, and my mood swings aren't nearly as bad. The ones around me are happier too. I'm not mean to them anymore. Well not really as often, I still have my bad days, but they are fewer and far between. My family likes seeing me happy and I like it myself.

I've had nightmares and insomnia since surgery. Melatonin and The Simpson's DVDs are my best friends at night. The nightmares are less often, but they do come, and they are bad. I'm always exhausted but I've learned to live through it now. 

I'm in college, online, and LOVING it. Well not this art class I'm in but in the end, I will have my associates degree. I love having that to work to. A goal. Something to work towards is just so fulfilling.

To this day I still don't know exactly why I called that surgeon a jackass. Yes he was being one, but I wasn't going to say anything. I didn't know I was saying anything until it was out of my mouth and I was halfway down the hall. I can only assume it was my dad and uncle Mitch up in heaven protecting me. You see for some time before surgery I had being "shadows" I guess you'd call it. But they where in the shape of people. I would see a shadow of a guy sitting in my dads lazy boy. And a shadow of a cowboy (my uncle was the cowboy type) leaning against the wall. I've seen each multiple times before surgery. I know some people don't believe in stuff like this and will say its just my imagination playing tricks on me. But I believe it was them. I haven't seen either since surgery. 

As much as I wanted to see my father, when I knew I would die that's the one thing that was keeping me going. I was going to see him again. And as much as I wanted to see him, I'm glad I'm still alive. In the past three years amazing things have happened.

 I was baptized, and I can share my story and minister to others. My nephew was born, and a little over a year later my niece arrived. Being an auntie means everything to me! I love those kids more then ANYTHING in the world. I have a bunch of new diagnosis's, but I'm learning to live my life to the fullest. I love being alive. I cant wait to graduate and hopefully go back for another degree. I cant wait to get married and adopt kids. I know God gave me this heart for a reason. And God NEVER makes mistakes. I don't know exactly what he has in store for me but I know it will be good. I know I'm going to do big things. I've almost died so many times, yet there have been so many miracles to save me. I know I'm going to do great things. 

Right now that is helping CHD parents and other CHDers. I've been told I inspire them and give them hope. Maybe that's what exactly what God wants from me, maybe there's more. I'm glad I can fine out.

This post was really hard to write. Harder then I ever imagined it would be. But I knew it was time to share. The story was just in me and  I had to get it out. It took me quite a while I stopped many times. A few times to wipe away the tears, once to talk to my brother, Once to turn on the fan (stupid heat.) Once because it was med time.

Like I said, I'll never stop taking my medications again. I've only missed a few doses, those times when you accidentally forget or the pharmacy doesn't fill things on time. Or the one time when my niece was being born and I was just so excited I left the house and was halfway to the hospital (which is over an hour away) before I remembered.

And currently there is no sign of heart failure, but its just a matter of time before it's back and I need a transplant.

I do the best I can and I'm quite proud of myself. These past three years have not been easy. Not even a little bit. But the good times defiantly make up for the bad times.
 Me and the greatest nephew EVER! Chase David

 Me and the greatest niece ever, Alyssa Faye on 4th of July.

I love harder, 
Laugh louder
Enjoy more
Regret less
and dial the phone more carefully now.

I can't imagine not being there for their lives.

Friday, July 6, 2012

Emma's Story

Emma and my dad share a date, just 10 years apart. I followed Emma via her moms facebook page for a long time and became close with her mom. I was devestated when word came that Emma passed away.
This is her story. Her mom asked me to make a video and I did the best I could.
Love and miss you Emma

3 Years - About a Girl

This post has been a long time coming. I've told bits and pieces of this story, but I think its time to tell the whole thing, since I've passed the half way mark. 
Three years ago this Monday, July 9th,  I was given 5 years to live, and a little girl was born. 

I knew I was really sick, but I didn't realize how much so. We where in Salt Lake waiting for my second open heart surgery (5th heart surgery all together). It was suppose to be the next day, but that morning I got the call from Primary Children's Medical Center saying they moved my surgery date. All because I hadn't had my pre-op testing, which no one told me I needed or when to get it. So I was angry. 

My mom, brother and I got in the car and went down to get the pre-op testing done. It started with blood work and they popped a vein. I then went to talk to the surgeon. He was a complete jackass, and I told him so. Read about that experience here.

Ramona at the park

All the while, a family I never even heard from was having there baby girl, Ramona. 
I got 2 echos and was met by a cardiologist. She told me that I was in severe heart failure and could drop dead any minute. She then proceeded to tell me without surgery I only had 5 years to live, and they would no longer do the surgery. In the long run it was a good thing, but at first I was upset. I was angry. I felt like everyone was giving up on me and I would die. I decided that if everyone was giving up on me, I would too. 

But then I got to the hotel and logged onto facebook to find I had a message. A man named Rudy, he found me on some CHD group, and had questions. You see his daughter Ramona was just born, with my same defect. It was then I realized I couldn't give up! I had to fight, and survive to show Ramona, and others, that their life can be amazing!

I followed Ramona's story closely and found out my surgery would be down at the hospital she was born at. Later I found out we would have the same surgeon. The man who would touch my heart, would touch hers too.

the first time I met Ramona in person

I didn't get the chance to meet Ramona before surgery, but I decided to come back to the hospital for my 1 year heart surgery anniversary. So in early July, shortly after Ramona's first birthday we finally got to meet. At starbucks. Me and her mom Vanessa got along great and she even let me hold the girl who in a way, saved my life. 

My mom and Ramona

My mom came with and fell in love with Ramona instantly. She was a sweet little girl who was willing to be held by everyone. She smiled and just played around while we talked. She even tried to eat my moms necklace.

me and Ramona at the park

We decided to do a picnic in the park the next day for CHD families. I was excited to meet tall the families, these kids mean everything to me. They let me know I'm not alone, and I do what I do for them. But I was excited to see this special little girl again.

I even got to take her on her very first slide ride.

Me, Brayden (TOF) and Ramona
Me and Jethro (Ebstiens Anomoly and Pulmonary Atresia)
Me and Angel Seth's family (Seth passed from HLHS)

I met 4 amazing heart families that trip (plus many more throughout the years) and it was all because Ramona made me not give up. She is a hero to me. I said goodbye and went home. I still followed her story closely and sent her gifts. And in February of 2012 I got to see her again. I decided to come home through Spokane after baby Adam's celebration of life. 

So we met up for breakfast. It was a really quick visit but I was glad to be able to see her again.

Me and her mommy talked and she played with her toys and even ate! The first visit she had a Gtube so I was so proud to see her eating. 

She was a little ball of energy playing under the table and talking. So different from the baby girl I held who hated grass and was only scooting around. We took so many pictures, cause she told me too. All the while her mom was telling me how she had a cath coming up in preparation for her fontan.

I love this girl so much, and am proud to see how great she is growing up.
She has a great personality. And we had to take so many pictures cause she wouldn't look. This was the only one we could get of her looking and smiling!

I love this girl, and her family. Her mom Vanessa and her dad Rudy though we haven't met yet because he's always working. Even her baby sister Ofelia.  This family, and this little girl will always have a very special place in my heart. They saved me. 
They weren't the first heart family I met, but they reached out at just the right time.  Rudy didn't know it when he was messaging me, but I needed a reason to go on. And showing Ramona, and all the other kids, there is hope, was my reason. 

I love all my heart brothers and sisters. But this girl is special. 

I just want to let you know Ramona came through her cath and fontan with flying colorings!
Ramona at home after the fontan with the gift I sent her

Thank you for letting me be a part of your life baby girl, even if it's just from a distance most of the time. 
I love you. Thank you.