Jessica's Journey: 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.