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?

Its Back .. I need prayers.

My heart hurts..
Literally.

Yesterday afternoon my heart started racing. Its done this before. Many times, but never as long as yesterday. I waited about an hour yesterday before I decided to go to the local ER. When they hooked me up to the monitor my heart rate was 153. So they called the doctor and measured my heart rate one more time. 101. When the doctor got there she listen to my heart and said my heart sounded good and I could go home. When I sat up my heart began pounding again and they measured it. 140s dropping down to 125. They still sent me home.

So I went home and off and on my heart would race. When it came time for bed I laid down and it just got worse. The racing the pain up into my jaw and the headache. Followed shortly by nauseous. I managed to sleep some. But woke up rolled over and it began racing again. So I ate and showered and it just got worse so I made the hour drive to a better hospital. When I got there my heart rate was 153-155. Every now and again it shot up into the 190s. The lowest it went was 125.

They did some tests and diagnosed me with atrial flutter. Atrial flutter is related to Atrial fibrillation. I had AFIB, they fixed it during my last open heart surgery. They told me its not good for it to come back. Its dangerous. They gave me an IV med. Eventually my heart rate dropped down to 77. Good, normal. And I felt, amazing! They did my discharge papers and gave me copies of everything to give to my cardiologist and sent me on my way.

I came home and felt good for about 2 hours. But then my heart starting acting up. Not racing, but beating harder then normal. It would beat hard and then stop, then beat hard then stop. Then I warmed up some dinner and started eating and that's when it all came back. My heart was pounding. I had a head ache and my jaw just killed.

When I was in the ER I asked them if the meds the game me was a cure. His answer, "No the only cure is for them to surgically repair the structural defect of your heart." Well they've done that. A few times and I was told I have nothing left. The only thing they can do is transplant.

I know that we where just waiting for something to go wrong. I knew transplant was coming. Is this it? Is this what we where waiting for? I'm calling my cardiologist all day tomorrow until they answer and demanding an appointment as soon as I can. Even if that means its in Salt Lake City.

Part of me just wants transplant to come. I want to get it over with. Plus I think recovery would be easier in my 20s then in my 30s and 40s. But on the other hand.. I'm only 21. This isn't fair and I'm not ready!!!!!!

I need prayers.