Down on my knees, I thought I was stronger.

You know I'm not quite sure what this post is about, I just know I need to write. So here it goes I guess.
All my life all I've ever wanted was to be normal. And yesterday I got the reality check that said, "haha never gonna happen!"

I have an infection inside my belly button. It's been there for a few months, but I finally decided to get it looked at. Because I've been tired and had swollen joints and a rashed showed up they decided to test for endocarditis and call my cardiologist. And this is where it gets fun. All the labs and everyting point to it NOT being endocarditis. But my cardiologist decided to voice concerns about the way I'm living my life.

Let me just say something right off the bat. I've had a doctor and a nurse both look at the infection in my belly button and tell me it has nothing to do with the piercing and that the piercing is clean and not infected. Sure I have tattoos and piercings, and sure, maybe they arn't the best idea for a CHDer. But my tattoos and piercings have NEVER gotten infected. Because I know how to keep them clean. And let me say something else. I've never gotten an STD before either. Because I'm NOT STUPID! Yet here my doctor is calling me an idiot because of some of the choices I've made. And what hurt worse? He called me an idiot for some of the things I ALREADY regret. If I could take certain things back, I would, but I can't. As much as I'd like to, I CANT! I've been working with a therapist for months now. He's helping me understand that some of these decisions are because of the borderline personality disorder (BPD). He's helping me with knew medication and counsling me on how to get my life back on track. And I am trying my hardest!

Which brings me to another point that I feel I need to talk about. More for my own comfort. I need to get it out. I've been on "happy pills" for a few months now and things have been going well. Until recently, the depression is back. I've been so depressed, I've hurt so bad that I've wanted to break something. I want to break something just so something will hurt as bad as I do! I wont deny it, I've thought of hurting myself too. Of falling back on something I use to do years ago. Falling back on a horrible habit I'm ashamed of, a habit I never want to go back to. But at times like this, its the only thing that seems logical. Because I hurt so bad, I need a reason to hurt. I've tried everything to distract myself and nothing seems to help. Coloring is the one thing I can focus on for longer then 5 minutes. But at times it doesnt last. My newphew is one of the only things that can make me smile. But when he's gone, these feelings come back. I took him sledding for the first time today, and it was fun. But as soon as I came home, I wanted to cry. I thought I was stronger then this. I thought I was better. I sit here, and I have an IV in for antibiotics. I have two more rounds and all I can think about is how much I want to pull it out, crawl into bed and hide. All I want is to be done. Is to not to have to do this, any of this anymore. To be free. To be normal.

Me a transformer? No thank you.

I've had a bunch of weird nightmares since my last open heart surgery. Nightmares about heart lung transplants. Nightmares about the earth slowly crushing me. Nightmares about an old lady hiding snakes in her tree. Random dreams. Just something to scare me enough to wake me up.

Recenetly these nightmares have a reoccuring theme. Never the same dream, but always the same theme. Being wide awake during a procedure. Wide awake during a heart biopsy where I felt them tearing a part of my heart out (which was very painful btw). Wide a wake during a cath where I could feel them cutting and inserting the tube thing they use. (again very painful)

Well this last dream had the same theme, to a point.

It started as something completely different. Something so weird I knew it could never happen. But suddenly turned into an operating room nightmare. There was an old lady in the OR who was having some sort of foot surgery but for some odd reason she couldn't be put fully out. So she was just very stoned. I appearntly was donating an artery from my foot to her's. (or something along those lines, I'm not exactly sure).

I told them I wanted to be put fully out, but they came back with "she cant be, why should you be?" So I went on to tell them, I've had open heart surgery, and had nightmares about being wide awake during procedures, you will put me to sleep. They didn't buy it. I even got my mom to come in and explain to them. They said okay, shooed her out of the room then tied me to the table. My mom came in, untied me and I ran. This is where the fun part begins.

Appearntly the OR was in a walmart, because I was all of a sudden running down the isles of walmart. Every one there who had any sort of medical implant like fake knees, hips and whatever else you can have fake, and even the people on crutches, where turning into transformers. And these transformers where evil, chasing after me wanting to take me back to the OR. I swear this was a disabled peoples walmart because everyone was a transformer. And I was running down an isle when it hit me. My pacemake is going to turn me into one of these things any minute now.

As I continued running I just knew it was a matter of minutes. But I finally made it to the exit and that's when I realized I was dreaming and I managed to chant "wake up wake up wake up" enought to wake myself.

This has got to be one of the weirdest heart related nightmare I've had.

I really don't ever want to be a transformer

OHS: Pt.3: Cardiac Cath

The days leading up to the cardiac cath where some of the best of my life I guess you would say?
I had just got news I needed ANOTHER life saving heart surgery, I was worried and all I wanted to do was have fun. So I did. I spent a lot of time with my then boyfriend. Those day's where also difficult. My symptoms where getting worse. Everything got me out of breath. My chest hurt a lot.
I spent a lot of time on the phone talking to nurse Julie. Setting up plans and preparing. About two days before cath I had to set up for a room at the Ronald McDonald House of Boise.
(Have I ever mentioned how much I hate talking on the phone?)
Those two days are a blur of memories. A blur of my boyfriend and I hanging out. A blur of chest pain. I remember the day before going to Boise I went to my friend's house to hang out with her. I remember dropping my phone in the toilet. (Just like me to ruin a phone before a 3 hour trip through the Mountains.) Then having to stop by the Sheriff's office (where my mom worked) at 11PM to tell her my phone had died. Then rushing home to finish packing and put the phone in a bag of rice to see if I could dry it out. And of course to try and get some sleep.
The next morning was hectic. Running over to my brothers house to see if he could fix the phone because I couldn't get it to turn on. Then finding my old phone that I had before I upgraded. Once I finally got my sim card in my old phone and turned it on I found a message from the doctor who was going to do my cath. From then on it was a bunch of phone tag between me and him.
Phone tag, checking into Ronald McDonald House Boise, shopping at the Boise mall, getting soaked in the rain, more phone tag, dinner at red lobster (but I couldn't eat I was too nervous) and then finally meeting Dr. Womack.
Dr. Womack was, is, an AMAZING man. He met me down in the entrance of St. Luke's Children's Hospital. He explained everything he was going to do the next morning. He then described my heart defect and the surgery that was needed. He even explained everything a tenth time when I began to cry and said I still didn't understand.
The next morning was slow. I remember waking up and going to the hospital and having to sit in the entrance until a orderly would come down and take us up to 3 telemetry. The wait seemed like forever. I remember playing on Facebook on my phone, trying to pass the time. I was so anxious. But finally he came and I got to go upstairs. I got into my gown, I answered all the questions about what I'm allergic too and did I eat that morning? (No of course not, you told me to fast!) Finally doctor Womack came back in and did a physical exam to check my liver and other organs while the nurse put in my IV. That's when nurse Julie came in! She gave me a big hug and said "I feel like I already know you!" She was amazing! Soon it was time for the good drugs. The anesthesiologist then began to ask questions (boyfriends name?) and was sad when mom already knew the answers. Soon they where wheeling me to the cath lab.
I don't remember this, but this is what I was told. The anesthesiologist tried to get me to princess wave down the halls. He was appearntly hilarious to watch. I refused to princess wave. (thank goodness!)

I remember waking up in recovery, coughing so very hard. My throat hurt. I turned to nurse Julie. I was very thankful she was still there. Waking up to a familiar (okay, I only met her a few hours ago, but it was familiar) face just made everything better. I asked if they had to put my on the vent. They told me they were not going to, but my throat was so sore I thought maybe they did. I was right, appearntly I had a reaction to the anastesia and was coughing so hard I was waking myself up. This is when they told me I needed to be checked for asthema. I asked if they blocked veins like they said they might (nope they didn't).

After that all I would ask is what time is it and can I see my mom. I wanted out of the recovery room. Everyone in the room looked dead. They where just laying there, and the only reason I knew they weren't dead was because it was recovery ward. I kept having them switch me from the nasal canula to the mask because I hated the canula.

At one point I got hot and the nurse guy who was watching me walked away for a second. I considered moving the blanket until I realized I was naked from the bottom down. No one needed to see my butt. So I slowly sat up and removed the socks they put on me. At that point the nurse guy came back and gave me a weird look. Appearntly you are not suppose to sit up in recovery.

Eventually it got to the point where I was so anxious that I annoyed the nurses enough that they moved me from recovery to 3 telemarty. (sooner then they thought I would). I was happy to be away from all the sick people and to finally see my mom again! We started joking right away and I told my mom "shut up or I'll kick you." None of the doctors and nurses knew what to make of that and just stared. Eventually nurse Julie spoke up "Use your left leg!" (They had gone in through my right leg and I wasn't allowed to move it for a while.)

The rest of the day was blur of everyone not waiting for a backboard to move me to a different bed but of about 6 people just lifting me with a sheet. A blur of Julie, a blur of my cardiologist coming to see me. A blur of finding out yes, I did need surgery. A blur of meeting an electro physiologist. A blur of a nurse I didn't like a of an amazing nurses assistant name Drew. A blur of having a major headache but they wouldn't give me a meds because they couldn't find a doctor to authorize it. A blur of chugging caffiene to try to get the head ache to go away. Of being anxious and complaining about not moving my leg. Then of finally being able to move my leg and it felt so good that I forgot about the headache for a while. A blur of my mom becoming super bitch and harassing the nurses until they finally gave me some damn asprin and my prozac to help my anxiety.

And then when both kicked in, it was me and my mom joking. She helped me clean up some blood and went to throw away the tissue in the sharps container and lost her ring in it. It was then Dr Womack coming back in and saying "I hear someone is anxious and wants out of here." My reply? "Well now that I have my prozac and asprin I'm good!" He gave me a weird look and then went on to say,

"You've been a lot of trouble, are you worth it?"

I didn't even need to think, I answered

"Hell yes, I'm awesome!"

So we went to a walk so I could go see the video from my cath. He told me it was a good test, because if I was gonna, spring a leak, it's best it happen here in the hospital. He was shocked to see my right ventricle (what tiny little bit of it I had) actually trying to work. It was trying to do its job. Of course, it wasn't, it was just pushing a little bit of blood around, not at all helpful, but it was trying!

I got to go back to the Ronald Mcdonald House after that to spend another night. I remember waking up the next morning and finding another sticky on my shoulder. And then it was the 3 hour drive home to start a whole new journey.

A journey to save my life.

OHS: Pt.2: The Call

The open heart journey isn't just the actual surgery itself, its everything leading up to it, and everything after it. It's harder then most people even imagine or understand. And that is why I'm here, to try to help others understand. To let people see the journey from the CHDer's point of view, not just the parents. Though, not all CHDer's point of view are the same.

After I started to see a cardiologist my life got into a routine again. Wake up, pills, babysit the most adorable little boy in the world, and sleep. And on my days off, well babysitting was replaced with friends. My life was good, I thought I'd done the right thing by finding a new cardiologist and I thought I'd be fine. Even though I was still having symptoms. That was until a chilly morning sometime in late 2008 (or maybe it was 2007?).
I remember that morning pretty well, (just not dates, I'm not a dates person). I was babysitting the cutest little 1 year old boy (I called him buddy, he called me Dess). We where dancing. His favorite song was Papa Don't Preach by Kelly Osbourne. Probably not the best song for a one year old, but he loved it and we danced. We (he) danced a lot. I had to sit down and catch my breath. But I was dancing when the phone rang. I remember turning down the music and looking at my caller ID. I new instantly it was a doctors office. I assumed (never assume) it was my cardiologist, though I had no idea why she would be calling.

I answered (out of breath still) expecting to here "Hi this is Julie from Dr. Fry's office." What I got was "Hi this is Kendal from Dr. Emge's office."
This is a little of how our conversation went.

Me - "who from who's office?"
Her - "Kendal from Dr. Emge's Office, I'm calling to set up your CT scan."
Me - "My what? Who is this?"
Her - "Dr. Fry's office didn't call you? She recommended Dr. Emge take over your care. He's a pediatric cardiologist and since you have the fontan and most fontans need to be revised he is best to take care of you"

In a matter of seconds I had a new cardiologist and possibly needed another open heart surgery. I told her I need to make a call and I'd call her back. Right after I hung up of course I called Dr. Fry. Julie answered and I asked why wasn't I told? I was angry. I wanted answers. So I told her what happened and she sounded shocked. She apologized, over and over again saying she was on vacation and the other secretary was suppose to call and tell me what was going on.

After I hung up with Julie I called Kendal back and set up the CT scan. Immediately after I bundled up my buddy got in the car and drove to my moms house. (She too was shocked)

The wait for the CT appointment was hard. I kept wondering who the hell this doctor was. What was his name (I couldn't remember what she had said it was)? But it finally came. When I got there it was the normal check in fill out paper work process. I noted how small the hospital was. I hate small hospitals, they never seem capable to handle complex medical situations (like a heart defect) to me. I didn't have to wait long to go back and get my CT.
The actual CT scan didn't take long either. They injected the dye and run me through the tube. There might have been a dry run first, I honestly cant remember. They told me to take deep breaths and hold them, the normal chest CT stuff.

After I got to finally meet the cardiologist and learn his name again! I'm pretty sure that first visit we just talked. I of course asked him if I needed surgery and of course, he didn't know yet. We set up another appointment for the normal, echo and EKG and blood work, always a lot of blood work. At one point in time my white blood cell count was to low so I had to get it redone at the local lab, it wasn't fun.

After the appointment with the the EKG and echo he could say pretty confidently that I needed another open heart surgery. But he wanted a cardiac cath to see exactly how my heart was doing.

So there I was.
I went from thinking I was going to be okay one second to having a new cardiologist I had never met and possibly needing life saving surgery the next second.

OHS: Pt.1: Getting Help.

I was 15 or 16 when I decided to stop taking my heart medication and going to the cardiologist. My cardiologist dropped me and that's when I realized I liked not having one. It was purely my decision, my mom didn't like it, but knew she had to let me do what I felt I needed.
In reality all I wanted was a healthy care free life.

I wanted to be normal. I thought if I stopped taking my pills, if I stopped it all maybe I would feel better about myself. Maybe I wouldn't hate myself anymore. I know now that was one of the biggest mistakes of my life.

I was 18 when I moved out of my mom's house. Newly 18 at that. I moved the week of my birthday. At this point I had been off my pills for about a year and a half, almost 2 years. Hadn't seen a cardiologist in about 3 years. I was partying, living it up, being normal. Before the cardiologist dropped me she told us she saw something on my EKG and wanted more testing done. But then she dropped us (for missing an appointment which we couldn't get to because of snow). Then I decided never to go back.

I know I should have gone back to figure out what she saw. I never should have stopped everything. And to this day I still blame myself for what came next, but I'm not going to go into detail about that, maybe in another post sometime.
So Anyways, when I was 18 and on my own everything was finally catching up to me. Symptoms had been appearing, and getting worse those past 2 years, but now they where escalating and fast.

Heat was making sick. I remember at a family gathering where everyone was outside chopping wood, I stayed inside and played a computer game. I couldn't be out in the heat it hurt and made me so nauseous. I remember everyone saying things like "Jessi's faking" "She's playing it up" "She just doesn't want to help". And when it came time for dinner I felt bad for eating cause I didn't help. I didn't do anything to deserve it. I remember trying to walk around. Trying to chase the toddler I was baby sitting and it just hurt to bad. My heart would pound, I got out of breath and I got the worst headache. I had to sit down for at least 10 minutes to even start to feel better.
When it got to the point I could no longer walk room to room without this happening that's when I knew something was really wrong. I knew pretending I was normal and okay just wasn't going to work anymore. As much as I hated it, I had face who I was.
I needed to find a cardiologist and get help again.

Getting Use to Normal

I've never been normal. But ya know I'm okay with that. I always have been.

I'm use to sitting down more often, getting out of breath faster. I'm use to taking multiple pills daily while normal people my age take none. I'm use to missing school, and other events for doctors appointments.

I've even use to being not normal in things not pertaining to my heart. I like to dip BBQ chips in chocolate pudding, I microwave my ice cream and many other things I've been told are not normal.

I'm use to it, I work around it, or I work with it.
But for the past 4(ish) years I was getting worse. I got exhausted by the littlest movements. I couldn't walk room to room without being in major pain.

Turns out it was Atrial Fibrillation and my heart was dilated and up against my breastbone. That's what was causing the pain, that is why I couldn't walk room to room. Why I couldn't do almost anything. But they fixed it with open heart surgery. Two months after surgery though it failed.

Those two months where glorious. I could walk room to room without pain. I could make my bed without pain, though I was still exhausted. I was recovering from open heart surgery after all. I was excited. This was the start of a new, more productive life.

But then the palpitations came back. The pain while making the bed came back. I figured it was just something I would have to live with. But that's okay, I could still walk room to room! They removed part of my heart so it was no longer on my breast bone. That was the main reason I couldn't walk room to room. So that was fixed. I was happy. I could deal. I could make my bed, it just hurt.

But over time it just kept getting worse. I stopped making my bed all together. It wasn't a conscious decision. It just happened, because of the rapid heart rate and pain. Walking was still good though so I thought I was okay. But then the rapid heart rate came more frequently. It came when I was sitting down, when I wasn't doing anything. I knew something was wrong. I'd known for 2 years but the doctors didn't believe so I gave up. I figured it's something I'd just have to live with. So I did. And I could deal for a time. I dealt for 2 years. Until the rapid heart rate came while I was just sitting down and lasted 30 minutes. It went away but then came right back when I got up to make a sandwich. That's when I knew I couldn't deal anymore.

3 ER visits, 6 days in the hospital and 1 cardioversion (that's when they shock your heart with those paddles) later, I was in a normal heart rhythm. I haven't been in a normal for so long that I didn't even try to do "normal" things. That is until just recently I washed my sheets and had to make my bed again.

That's when I found out I can make my bed again. It's been so long since I've done that! It's been almost 2 weeks since the cardioversion and I haven't had one palpitation or rapid hear heart. I can dance around my room again. I can clean. I can do normal things again.

I'm not use to normal!

It failed

Many things have failed in my life.

Almost every diet I've ever tried. Every sleeping pill I've ever been on. Every relationship I've been in. So on, you get the point. It happens I move on.
But when it comes to medical stuff that's when I freak out. When I was little, I had my first open heart surgery. I was 1 1/2. They did the glenn. But it failed. They did another procedure (that I dont know the name of) and it too failed. I'm lucky the fontan worked. It's the only reason I'm alive. But I wasn't old enough for those failings to effect me. It effect my parents, yes, very much so. They prayed that death would be quick and painless. The doctors had given them no hope, so they thought I was going to die. And then after I was in a coma for 2 weeks because I was on the heart lung machine to long. I'm sure for those two weeks, and for the months, and maybe even years after, they where terrified the fontan would fail to.

Wednesday of last week I learned one of the procedures they did during my last open heart surgeries (2 years ago) failed. The maze procedure.

The Maze Procedure is surgery performed to treat atrial fibrillation. During the procedure, a number of incisions are made on the left and right atrium to form scar tissue, which does not conduct electricity and disrupts the path of abnormal electrical impulses. The scar tissue also prevents erratic electrical signals from recurring.

The maze procedure has good long-term results for treating atrial fibrillation. This surgery has been shown to stop atrial fibrillation for at least 5 years in 92 out of 100 people

Mine was done July 24, 2009. For me, I believe mine failed just a few months after mine was performed. For a few months after the surgery (which wasn't just the maze, it was also the fontan revision, part of my heart removed and pacemaker implant) I felt good. But then things started feeling weird again. I'd get weird palpitations. Nothing horrible, they would only last a second. But it was there. And I felt them. Something was going on. At one point they managed to catch it, my heart rate was 200. So they planned a cardioversion. But when I got there, my INR wasn't high enough. So I waited a week, and when I went back, my heart was in a normal rhythm.

Ever since then I would get random palpitations. My heart would race and I'd go to the ER but they would never be able to catch it. So I finally stopped going, I was tired of being told it was nothing. I ask both my cardiologist and electro physiologist (pacemaker dude as my mom calls him) and they told me it was nothing. So I gave up on. Figured I'd just live with it. It hurt, I hated the feeling, but there was nothing I could do. No one believed me.

But then, the palpitations began to last longer. It lasted 25 minutes so I decided I'd go back to the ER. My heart rate was 150-190. I was finally taken seriously and sent to University Of Utah, where my (new) cardiologist worked. I was told I was in atrial flutter and atrial fibrillation.

That was when I realized the maze failed. I always wondered, and now they confirmed it. My first thought was "Yes! They finally caught it! I told them it wasn't nothing!" But then I worried. They performed a cardioversion on me and put me on new medications, now I feel amazing. I haven't had a palpitation since.
But now I worry. Will this too fail? They say the maze works for 92 out of 100 people. That means I'm one of the 7 it doesn't work on. I haven't looked up cardioversion facts yet. Not sure if I will or not. Sometimes its better not knowing.
But there will always be that thought in the back of my mind.
Will this fail too?