Jessica's Journey

Down on my knees, I thought I was stronger.

2012-01-22T12:50:00.001-08:00

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.

2012-01-12T11:19:00.000-08:00

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

2012-01-11T19:59:00.000-08:00

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

2011-10-22T10:41:00.001-07:00

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.

2011-09-28T12:21:00.000-07:00

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

2011-09-26T09:30:00.000-07:00

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

2011-09-14T19:56:00.000-07:00

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.

2011-09-05T15:19:00.000-07:00

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.

A Fathers Love

2011-08-16T19:17:00.000-07:00

A Father's love. It comes in many shapes, sizes..what not. It always starts some how. In many different ways. It really just depends on the person.
I feel like it's time to share this story. A story that when I first heard it, it hurt me. It hurt me beyond words. Until I realized just how much love it showed.
This is the story of my dads love for me.

When I was born, everyone was beyond happy. Of course how can you not be with a new baby. Unless maybe your a druggy and this is gonna ruin your chance of getting high and what not. But that's not my family.

I was the first (and last) daughter for my mom and dad. First granddaughter on my dads side and second on my moms. Everyone was thrilled.

I'm pretty sure that's when the love started.
Right before I was about to come home though I was diagnosed with Tricuspid Atresia. My parents where told it was a miracle that I survived my birth. I was suppose to die. And would likely die soon. They did my first surgery at 2 days old but still told them I would die.

My mom told me they where able to take me home shortly after the first surgery. But she noticed my dad didn't want much to do with me. She was always the one feeding me, changing me, so on and so forth. My dad would help but just not much.

She finally got so sick of it she decided to get a part time job so he would have to take care of me. So he would finally bond with me.

When she got home that night my dad was crying. The first thing out of my dads mouth was "she cant die". He didn't want to get attached because he was scared I was going to die.

At first hearing this story made me mad, thinking he never did love me. But then I got thinking. No that's not right. This just proved that he loved me even more. He loved me so much that he was terrified.

The Grieving Process

2011-08-10T14:05:00.001-07:00

I've been told I need to talk about this. So I guess I will. And I guess this is the best place for me to do that. This blog really has turned into a diary.
Except it's public for you all to read.
Is that brave or just stupid? I don't know.
Either way, it's how I'm gonna role.

Being told I can't have a baby has been devastating. It's a loss, and I am allowed to grieve. And I will grieve, for however long I want to grieve. And I will do what it takes for me to grieve.

Let me just refresh everyone's memory. I have a heart defect. I'm a single ventricle, half a heart, whatever you want to call it. I was told I shouldn't have kids. It could kill me. It could kill the baby. So on. So I wont.
I decided a long time ago I actually wasn't going to try and have a biological child. Not because it could kill me. But because I have a higher chance of having a CHD baby. The chance of me dying doesn't bug me. But the chance of my baby having to go through what I'm going though, not going to happen. I wont do that to him or her.

I did try at one point though. I ended up miscarrying before I even knew for sure I was pregnant.
(click to read my letter to the baby)

I was trying for over a year and never got pregnant before or after that one time. So it just makes me realize the are right. My body can't handle this. It can't handle a pregnancy, and it wont.

To realize when your only 21, that your body is failing you, and you wont achieve your biggest dream is hard. I've been made to feel I am grieving wrong. Or to long.

Yes I know I actually choose to give up trying. But it's still a loss, and I'm still allowed to grieve. Because every time I go to the cardiologist and they tell me once again, nope you can't have babies, it hurts. It hits me and it starts over again.

I don't know what the "right" way to grieve is. I'm sure there isn't one. But I'm trying to figure it out. I'm trying to get over it. It's just going to take some time. And I need everyone to be patient with me. Let me grieve.

Because I've wanted to be a mommy from the first time I picked up a doll.

And the verdict is....

2011-08-04T18:53:00.000-07:00

You know, I sat, (okay maybe not sat, I did get up and start laundry) for about twenty minutes thinking how to start this post. I'm Still not sure how to really start, or well continue it. So here goes.
Salt Lake City is the most confusing city in the world! Yes that's right. I was in Salt Lake, and I got lost, a total of 3 times! But again, yes that's right. My disability hearing was yesterday!
And let me just start off by saying, oh my crap was I nervous! And not being able to find the building didn't help much. But eventually we got there, and thankfully pretty much on time! Thank GOD! Going through security was fun. I swear people are stupid. I gave them my pacemaker card which says I cant go through the metal detector. Then trying to tell them I CANT have the dang wand either because it will mess with my pacemaker. The looks I got where incredible! But okay, whatever, thankfully no one messed up my pacemaker!
I always assumed I would take the longest getting through security, but I didn't. Nope, my moms purse had to be searched, that was fun!
We finally got up to the waiting area and only had to spend about 2 minutes waiting to meet with my lawyer. The first thing he said when we went into a private room to prep before the hearing was "Good NEWS! Well the judge reviewed your case and already decided that he's giving it to you. So we don't need to go through with the hearing!"
Oh God! My mom and I sat in silence for a moment and just stared at him while it sank in! I WON! I WON! But then lawyer goes on "but he would like to do the hearing anyways, I have a trainee here and he wants her to do it for practice. But don't worry about it, he's already giving it to you."
Fine by me I WON! I WON! I WON! I'm going to get disability! So we did our mock hearing and I was able to leave 20 minutes after my hearing time! Amazing! I shed a few tears of joy. This is going to help so much! But they wont back pay my medical bills. They wont be taking care of the half a million I have in open heart surgery debt. But that's okay. My bankruptcy lawyer says he can protect the back pay I will be getting. So soon, I'll be debt free. I'll have a fresh start and I'll be able to begin my life! Yes!
While I was in Salt Lake I did manage to meet up with two amazing CHD Families. I love meeting CHD families! It helps me feel not alone!

Averi is a very cute 1 1/2 year old. Her giggles will melt your heart. You would never tell by looking at her that she was born with a serious heart defect, HRHS, and at 9 weeks old transplanted!

TK is 1, almost 2 years old. He was born with HLHS and is currently on the heart transplant list at primary childrens medical center. He is such a cute little boy. I was suppose to meet him and his parents for lunch but circumstances changed. After a routine heart check up he was admitted. So we met him in the hospital. They are doing tests to make sure he doesn't have endocarditis. They where going to try his fontan in a couple weeks but this may push it back. He really needs his fontan. Please say an extra prayer for him.

So all in all, a really GREAT trip for me!
Thank you Lord!

Hurdle #1

2011-08-01T21:53:00.000-07:00

has finally come and passed! That's right, one thing I can finally check of my list of things to do this week! Today I met my new adult congenital heart cardiologist. Dr. Green.
Today was full of crazy terms that no 21 year old should know. But I know them. And I know what most of them mean!
Superior Vena Cava apparently I have two. Which isn't normal, but some times happens with other heart defects.
Hypo-plastic Right Ventricle was told that doctors now pretty much inter-change this with Hypo-plastic Right Heart Syndrome. But HRV is when your missing the ventricles but still have the aorta and HRHS is when your missing the aorta too. Or something like that. Either way, doctors inter-change them.

Anyways I know there was many more terms. I'm just slow right. It is 11pm after all.
So, I'm not sure how I never heard of Saint Alphonsus's before, its a big hospital! But we shockingly parked next to the right building! Go us!
So I met Dr Green. He was a nice, upbeat old guy. But I liked him. A lot!! He talked a lot, but made everything he said understandable. He mentioned my 2 superior vena cava's. And brought up the transplant subject. On average, fontan-ers (that's me!) usually go into heart failure in their early 30's. That means they usually get a transplant in their late 30's early 40's. But every case is different. That's just a average. So according to the average, I have 15 some years before transplant! As long as nothing happens.
He also brought up the baby thing. Again saying that it's really not a good thing. And most fontan-ers he's treated, cant successfully complete the pregnancy without either damaging their heart or miscarrying. I'm still not sure how I feel about this. I've been trying to work through this for some time now.
I asked him about my mitral valve. He told me it's leaking. I asked him about my lightheaded-ness. He wants to switch my beta blockers as he thinks the atenolol is causing it. So I am now on Coreg, which I have to take 2 times a day instead of one. Which isn't a big deal. He also wants me to carry a water bottle with me. To keep really hydrated.
So after I saw him I got an echo. Which took TWO HOURS. The techs (yes that's right, she brought in another to see my heart)where having a field day looking at my heart. They told me cause they usually just see babies, when they are sick. They don't usually get to see the heart all grown up, and repaired. Which really didn't bother me to bad. I like that people get all excited about my heart. It's neat.
Then after that it was on to blood work. Not an all time high, only 2 vials. My high is 6. But they are doing a CBC and all the usual stuff to make sure everything is okay. Plus checking my liver to make sure the extra strain on it isn't messing with it too bad.
They will call me with the results of both tests in a week-ish. But only if things are bad. So hoping for NO phone calls! And now its on to hurdle #2, my disability hearing. Please wish me luck, or say a prayer. I'm so nervous!!

Terrified.

2011-07-28T13:53:00.000-07:00

It's as simple as that. That one single word. Those 3 syllables describe how I'm feeling in every single fiber of my being.
For the second time in two years I am putting my life in someone else's hands. No this time, it's not a doctor. It's not life threatening and I wont die. But it's still my life, in someone else's hands. This time, a judges.
I wasn't this scared the first time I put my life in another's hands. No that was easy. It was a matter of life and death. The surgeon saved my life. I wasn't scared of death, death is easy. It's life that's hard.
This judge gets to decide if he will make my life a little bit easier, a little less scary. Or if he is going to let it stay terrifyingly hard. He has the choice to grant me disability or not.
He has the choice of giving me a fighting chance. Of letting me get insurance and paying off the over half a million in OHS debt. He has the chance of allowing me to get my pills without worrying how I'll buy food. And being able to make doctors appointments. He has the chance of giving me a life. Maybe I'll finally be able to live on my own.
But he also has a chance of keeping my life the way it is. No insurance, no money. Trying to work, but not being able to. Of it being pure hell at times. Choosing between food or pills.

My lawyer called and questioned me a bit, coaching me on how to phrase my answers. And it absolutely terrified me. What if I say something wrong? What if I ruin this for myself. I don't know if I can answer those questions the right way. I don't do well with public speaking. I'm so scared.

What hurts the most

2011-07-26T07:33:00.000-07:00

Death is hard, yes I'll agree with that. It's the single most devastating thing a person can go through. Wether its the loss of a parent, a child, or a friend. It's hard. It's painful.

But I think the thing that hurts more, is the forgetting. After my dad died everyone told me, just remember the good times. Remember the time you had with him.

My dad died 14 days after my 11th birthday. This year marks 11 years since he died. So this year, 14 days after October 17, I'll have been living longer without him, then I ever got to live with him.

It seems that everyday, there's something else gone. I don't remember the good memories. I think maybe I have one good memory. And the rest aren't so good.

I don't remember his favorite color. I don't remember his laugh, his smell, his voice. I barely remember him trying to help me with homework. There's so much I just keep forgetting.

That's what hurts the most.

On the road again.

2011-07-25T17:09:00.000-07:00

And so it starts again. The road trips. I guess they will never really stop will they? When you live with a fatal disease like CHD, they just keep coming.

I was so excited when I found a cardiologist in Idaho falls. Lucky I thought! Only an hour from my house this is amazing. But of course, my heart being so complicated, I'm just not that lucky. But I did finally find an adult congenital heart specialist. So on August 1st its back to Boise I go. I have a feeling this is going to be the pivotal moment in my heart care. The turning point. To what? I'm not sure. But I know this is the moment.
It felt like before, I can feel it something big is coming. It feels the same as before. When I was about to find out if I need open heart surgery. I'm just hoping this doesn't end the same way. And I have a feeling it wont. I have a feeling its a good turning point this time.
After that, it's another road trip. August 2-4 I will be in Salt Lake City for my disability hearing! Its about time! I filed over 2 years ago.
I need to win this as this is the only way I can get insurance. I am scared and nervous. If I don't get this I'm not so sure what I will do. It feels like I'm putting my life in another person's hands for the second time in 2 years. What a weird thing this CHD life is.
But other then that, I am excited to meet a CHD momma Breeanna and her CHDer Averi!!

The Ending.

2011-03-24T15:51:00.000-07:00

I'm sitting her trying to fix my Itunes and started to think about the book/movie My Sisters Keeper by Jodi Picoult
How or why that came into my head, I'm not 100% sure. Maybe because someone was talking about books earlier.
But anyways it made me think about how the movie ending was completely different then the book ending. I won't go into details for those who haven't read the book. But it really made me mad that they changed the ending.
The movie ending just shows that yes, sick people die. You can't always save them.
But the book ending. That shows something completely different. It shows nothing is ever 100% things happen spur of the moment. What you thought would happen, might not. And something you never even fathomed can happen in the blink of an eye.

I made the mistake of reading My Sisters Keeper shortly before I was suppose to have my open heart surgery at Primary Children in Salt Lake City Utah. I never had a good feeling about that surgery, in that hospital. I for some reason believed I would be seeing my father again soon. He died when I was 11. But when I finished that book it really hit. I can die. We all can, any minute of any day.
I never cried so much over a book before. Until that night. When I was home alone finishing My Sisters Keeper. When I finished reading that book and managed to dry my eyes enough to see, I ran to my room and grabbed my notebook. I wrote letters, to the most important people in my life. My mom, my brother, grandma, boyfriend, and best-friend.
Each letter started with "if you reading this, then I must have died during surgery." It went on to tell them how I knew this was coming, how much I loved them, and so on.

But anyways! Haha I always tend to ramble. But anyways, my real reason for this post, not just to share my sad story.
Is the ending is never certain. I learned that with this book. It put me on edge. But now that I am alive. Thanks to my surgery being switched to Sacred Heart in Spokane, now that I still have time and know the meaning of life. I plan on making the best of it.

I plan on making it a happy Ending.

xJessix

PS - if you good with blog backgrounds please message me I need help!

I'm Still Recovering

2011-02-28T10:17:00.000-08:00

My open heart surgery was 19 months ago, almost 2 years. But I'm still recovering. Not heart wise. My heart is as good as it can be. But mentally.

Before my open heart surgery, I never had sleep issues. I never had to sleep with the TV on, or with my Ipod on. I never had the nightmares about heart lung transplants, or terribly painful deaths. After OHS I dreamed the earth was crushing me. Weird, I know.

The past three days have been an experiment for me, trying to sleep with no noise. No TV or no Ipod on. Plus I've been off sleeping pills for a while now. The experiment is okay, but its hard. I can't fall asleep til at least 3 AM. The noise is hard. I don't like the silence. But I've done it. 3 nights with nothing.

But my heater has been on because I'm always freezing, so that noise has been there and I truly believe that has helped. So I'm trying, but its a slow process.

As I have said, I am still recovering. Not heart wise, but mentally.

The blog post.

2011-02-13T14:26:00.000-08:00

I will not apologize for my status. I know you think it was a bipolar moment, and you know what, maybe it was. But I will not apologize for it.

My status wasn't about anyone in particular so I don't know why so many are taking it as I trashed them personally. I have never once, and will never trash a CHD parent. Or belittle what they have gone through. Because I do know, for them it is hard. I don't know how hard, and I can't imagine what it's like to have a child with a fatal illness.
But I do know what it is like to live with one.

I am not looking for attention. Even though I know that what you all think this blog post is for.

I am a CHDer. And your right, I was too young during my first surgeries to remember them. But I do remember the doctors appointments. I remember all the blood draws. I was terrified of needles. I remember waiting in the waiting room, hearing other kids crying, knowing that I was next. I remember the echo techs who pushed to hard, and made me cry. Knowing its what they had to do. But even though its something that needed to be done, that doesn't make the pain any better. I remember waiting in the ex rooms. Man I hated them, it was always cold in there, and I always had to take my shirt off. I hated having to take my shirt off. I hated the waiting. The tests. The horrible tasting medications.

I am also bipolar and at the moment, have a concussion. Do I complain? Sometimes, but it is my facebook and I can post whatever the hell I want.

Sometimes I don't know how to deal with this stuff. I don't know how to deal with the bipolar, I keep upping my meds and it doesn't seem to help. This post concussion syndrome is so very new to me. I don't know how to deal with it either! So do I vent on my facebook? Yes sometimes. Because I gotta get it out some how.

What I'm trying to say is this. I am not looking for attention (though I know you'll think this is my way of trying to get it. I'm not stupid) I post my feelings because it is MY facebook. I have a right to my opinions. I am a survivor, I am the one living with a life threatening illness. I am not going against any parent or research. The fontan was new when I was a baby, now its a common thing. I helped with that research! So how can I not be for it? I am not belittling what a parent goes through either. I know its hard on them.

I make the pictures/videos for awareness and awareness only. I do not have any hidden motive.

So trash me all you want. Your just making yourself look bad.

What kind of daughter am I????

2011-02-08T19:48:00.001-08:00

I'll answer this question. A bad one. A very bad one!

I'm trying to find a background for a tag of my dad. And I can't remember anything he would like. I remember 2 things. Off Roading, he did alot, and he was out doorsy. But ever picture I look at I also find a question.

Did he hunt? Did he like hiking? I know he's been hiking but did he like it? I know he was been canoeing, does that mean he liked water? I know he liked trucks, but what kind? What was his favorite color? I know he liked guns, but what kind?

I didn't even remember that he hated sports until my mom told me about it a few days ago. I know he liked the song "where did all the cowboys go" by Paula Cole. But I don't know what his favorite music is. I know he liked horror movies. But what kind!? What was his favorite monster truck? What was his favorite thing to make??? What did he absolutly love doing?

Coming to the realization that I don't remember him, I think its a little hard then his actual death.

My request.

2011-02-03T16:36:00.000-08:00

Okay as I posted on the status before this, I feel really selfish. I feel like I'm wasting everyone's time on this little insignificant request. I feel selfish, because this wont help anyone but me. But I really need this.

As many know, I have CHD. Tricuspid Atresia, VSD, ASD, Mitral Valve Prolapse. I only have 1/2 a heart. I've had part of my heart removed and I've had issues with bradycardia, tachycardia and atrial fibrillation. I had my 6th heart surgery July 24, 2009, and I now have a pacemaker.

My parents fought for me as a child. They supported me, and raised me. They did everything they possibly could for me. Which is amazing, and what parents are suppose to do. But they shouldn't have to when their child is 21.

I can't work and I don't have any income. My dad died when I was 11 so its just my mom and brother here now to help me.

I live with my brother rent free. Which I feel terrible about daily. He has a new wife, and a new baby. They can barely make it themselves. They don't need me also.

My mom helps with groceries and pills and drs appointments, but shes barely making it through herself. My grandparents also try to help with money. But it just all makes me feel horrible.

THEY SHOULDN'T HAVE TO DO THIS!!!!!

I know they love me and are doing it because they do care. But still. I'm just a burden.

I make angel collages for parents. But I can't ship they out because I have no money. I have over 500,000.000 (I stopped counting at 1/2 a mill) in medical debt. I can't help out with groceries, or bills. I pretty much cant do shit to help anyone.

I can't get insurance or any government help. I've been denied for disability at least 5 times and am now waiting to plead my case in front of a judge. I don't know how much longer I will need to wait for this. But wait I will, its already been over a year.

Okay, so I wrote all that as background. This is my request.
I need prayers, good thoughts, whatever.

Please pray I get my disability. So I can have them back pay all my medical bills and be out of debt. So I can help out my family a little, like they helped me. So I can get insurance and better health care. So I can finally support myself and mail those angel collages. So I can move, and finally start my life.

Just sitting here hasn't been good for me. I need to start my life soon.
I need this. And I feel bad for asking for the prayers when there are people dying.
But I really do need this. I need a life.

My pacemake saved my life

2010-12-03T15:32:00.000-08:00

So today, our town put on a the festivle of tree's. A christmas thing we do every year. Where people can put booths up and sell home made things.
Today also gave me the chance to talk to many people I havn't seen in a while. Including the cop who responded during my accident.
Today was a good day, pain was bad, but all in all, I had fun. Saw friends I havn't seen in a while. I got hugs from so many people. People saying we've been praying so hard for you. How are you doing? You look wonderful and all that. I got to show off my scars. All in all a good day.
Near the end of the day I talked to the cop. My mom is a 911 dispatcher so I know all the cops in town. We are like one big family. The cop who showed up at my reck though is an especially close family friend. We do game nights all the time, and I babysit his kids.

So we where talking about the night. He was telling me how very gray I was. How I was shaking so hard. He told me how he went to talk to me in the ambulance to tell me my mom was on her way and they where cutting my clothes open and he got a sight he didn't need to see. He told me how I was covered in blood. He was looking at all my scars going wow! I thought it would be so much worse, there was so much blood. He told me he didn't think I would make it to the hospital.
But I learned something earlier. I shouldn't have.

My pacemaker saved my life. From all accounts I should have died. They where so sure I was going into shock. Shock can be a very deadly thing. But my pacemaker was there. It kept my heart beating. Its the reason I lived.

CHD Memorie

2010-10-31T23:24:00.001-07:00

-- written a few months ago--

I tend to supress memories. Well I think I try to without really wanting to or knowing I am doing it. I guess there are just some memories I dont want to remember.

A memorie came back today.

I was in highschool. I had gym at the end of day, last class. I didn't want to be all sweaty all day. One day, near the end of the school year. It was really hot outside. I was sitting on the bleachers in the gym. The teacher was rounding up everyone to go outside. I wasn't going to go. It was to hot for me. I was already feeling a little sick cause of the heat and my heart. So I wanted tostay inside work on homework. I knew I would still be hot but it would be better then being outside.

I don't know why, the principal came into the gym. My teacher was fine with me staying in. In classes before we actually talked about my diagnosis. She googled it to learn more. She was very good with me. Whenever I needed to sit out or anything, she was awesome. But when the principal came in he saw me sitting on the bleachers. I was waiting for them to leave and then I was gona go to the library to study. But he saw me sitting there and got pissed.

He asked me what was happening. Why wasn't I with my class. I told him I wasn't going outside. It was too hot. He told me no "YOU HAVE TO BE WITH YOUR CLASS!" I told him "NO" so he told me, if you arn't going to go out with your class you need to get out of my school.

I was kicked out of school. For staying inside because of my heart. I pretty much ran to my locker trying no to cry. Once I got out of the school I just couldn't stop the tears. I cried. I drove to my moms work, bawling. I told her what happen. Boy did she call the school and yell at them.

I never got an apology. I don't know what I reacted the way I did. I hated school and would have loved to leave early, wither permission. But it hurt. It hurt so bad to get in trouble because of my heart.

awareness videos

2010-10-26T12:50:00.000-07:00

Awareness video 1

Make an on-line slideshow at www.OneTrueMedia.com

awareness video 2

Make an on-line slideshow at www.OneTrueMedia.com

CHD angel video

Make an on-line slideshow at www.OneTrueMedia.com

IMAGINE chd life

Photo and video editing at www.OneTrueMedia.com

--check my facebook page for a couple more I made--
--Jessi--

A cardiac update - Am I doing the right thing?

2010-10-21T13:59:00.000-07:00

I have a question for you, but that will come later. Right now let me share with you a little about my cardiology appointment today.

8 AM in Boise, still kicking myself for that one. We left at 5 am, and where still late. Only to be told that when we got there we where in the wrong office. LOVELY!!
So we drive to the next hospital. Took maybe 10 minutes. But now we where even more let. Then we had to stand in the huge registration line, when the lady heard how later I was (by then it was 8:45) she bumped me in front of everyone else. Man, talk about evil stares.

So I get there and Dr. Emge's nurse is waiting for me. Apologizing saying they where getting a new secratery cause the one they had was slacking. Yeah I knew that, I didn't get a reminder call, and I went to the wrong hospital. Yeah someone is slacking. But I was glad they apologized.

So she gets me weigh and I turn around and almost walk right into my cardiologist. He look and me was like "HEY!!! you look so good!! How are you?" So me, "thanks I'm good, but having some issues with tachycardia. And theres this pain I want to talk to you about."

So he follows me into the room where the nurse does the vitals. My blood pressure was to high, not good. They where concerned and said they would do it again before I left. They want to keep my blood pressure low, because with a single vent if you blood pressure is "normal" or high, it works your heart just to hard.

So I start telling Emge about the pain. Explaining to him about how when I was in the ER they stopped my heart. A heart attack. When your heart stops, that's a different kind of pain. A pain like no other. And then I began telling him about these recent pains, how they had a hint of the heart attack pain. About the pressure how it went up into my jaw. I told him it was the worst pain I've ever had. I told him how my aunt freaked out over how pale I was.

He said it probably isn't my heart. He then left so they could do the echo. My echo tech was nice. She actually called herself an echo nerd. She would point out things and taught me more and more about my heart. I love learning these things. She told me how excited she was to see me because she did an echo before my last surgery and was happy she could see what its like now, after surgery. She also told me she loved seeing someone my age, because most don't make it this long.

She told me how my heart was amazing, its quite shocking to them sometimes. She told me how I was brought up at ANOTHER (apparently my heart has been brought up a lot, its just that random) conference. Because I have a shockingly big pulmonary sinus. Nothing to worry about. It's just bigger then they've seen before. It's not something people usually see.

That made me smile. Yup that's me, always shocking the Drs!!!

Dr. Emge comes back in and tells me my heart looks amazing the heart function is doing so well. At my last visit he wanted to see me every 6 months for a few years, this time he told me he's so impressed by my heart that we can go to once a year!!

YAY! You don't know how happy that makes me. So then Emge does the normal listen to the heart and checking pulses. And I bring up the pain again. I ask him, what could it be? What should I do? The pain is horrible.

She he then begins pressing down on my incision asking does this hurt? Does this hurt?
OF COURSE IT HURTS!!!! Your pushing down on my bone, pretty hard, thanks for that doc. So he's like its just your muscles. Healing and scar tissue. Don't worry about it.

WHAT!?

He then tells me that he's gona talk to Dr. Cadman my pacemaker doc and having him interagate my pacemaker and see if they can find the tachycardia I was talking about. If they can't they will give me an event monitor. I got my blood pressure again it was on the border of normal and high. Not to bad.

And then I got to go home. And in the middle of the hospital entrance I just broke down. Pretty much they are telling me I get to live in pain for the rest of my life.
I'm praying so hard that DR. Cadman see's the tachycardia that I'm talking about. I know it's there!!! I KNOW IT IS!!!! I'VE FELT IT AND I'M NOT LYING!
I'm so tired of everyone looking at me like I'm crazy.

Even if they see it and say other there's really nothing we can do about it. Well okay then!! that doesn't bother me, at least they see it and know I'm not lying. WHY would I lie about my heart anyways???

And so here is my question for you.

Am I doing the right thing?

Last time I had chest pains, before my surgery, I ignored them. I didn't go in cause I didn't want those looks. The ones that say "lier!!!" or the stop complaining little girl looks.
And that turned out to have been the worst possible thing to do. I almost killed myself doing that! So now, when I have the chest pains I get scared. What if it's happening again?? But everytime I go in there is never anything wrong.

Should I just stop? Should I give up? Should I just do the once a year thing and just live through the pain and ignore it, hope it isn't something bad?

My doctor also told me about a patient who reminded him of me. I won't go into details, but he randomly threw out how this man now has a job after his surgery.
WELL OKAY!! Fuck dude I get the picture.
But wheren't you the one pushing for me to get disability? You, and Mom, and everyone else are like no! Dont give up fight for disability.
But I keep getting these little side comments like, you need to get a job, you need to do this, you need to do that, Oh i'm taking care of you!
WELL I'M SORRY!!!

Should I just give up on disability??
Should I just give up on everything?

I'm not sure how much more I can take of this.
Of all the little side comments.

10 years ago today. Meet my hero

2010-10-17T14:14:00.001-07:00

Ten years ago today. You've been gone 10 years, today.

I feel I need to share my dad with all my friends today, but I just don't have the strength to write this story. So this is a post I wrote last year.

I've been writing a lot CHD awareness and stuff having to do with CHD. But I think today I need to do something different. I need to introduce my hero to my world. No one in my CHD world knows about my hero. They all call me strong, tell me how strong I am. But I need to introduce them to the person who taught me how to be strong.

His name was David Alan Goffard. And he was, is, my daddy. I don't remember a lot about him. Really nothing from when he wasn't sick. I want to say I was 6 when he was diagnosed. But I don't know for sure. When I was young my dad was diagnosed with leukemia.

I remember the day when my dad thought he might be sick. My mom, brother and I where in the living watching television. My dad was upstairs watching television. We where sitting there and then dad came down the stairs. You could see the stairs from the living room. Dad came down just enough to so we could see him and said "Carrie I think I need to make a doctors appointment." or "Carrie remind me to make a doctor appointment." Not exactly sure which one, but I remember that he came down and said something along those lines. It don't remember much after that, except me and my brother where dropped off at my grandma's house while they went to the doctors. It was just suppose to be a routine check up. But we got a call saying they where taking him up to the hospital. That's really when this journey started.

I don't remember much and I really hate that. Dad was in an out of hospitals getting tests and chemo. My brother and I always stayed with grandparents. Sometimes my dad wouldn't allow us to come see him because he didn't want us to see him like that.

One specific memory, It might of been the day they found out, or one of the other appointments but I remember my grandma taking us home because they where going to be later then they thought. I just sat staring out the window eating cheeze its.

This journey wasn't a very easy one. My mom had to go back to work to help pay bills. We had to rent a house in Wisconsin to be near a better hospital. I remember there was this boy, his family was renting the house across the street. His mom was sick. We hung out a lot we road bikes, went and played basketball, be collected sakada bug. We rolled down the big hill behind our rent house. We where there off and on for a few years. I remember we came back to the house one time and I found a pair of sunglasses I lost before. We did a lot in that house. That was the house in which I learned my grandpa puts yogurt on his salad. That's the house in which I got athletes foot from the shower. That's the house where my grandma introduced me to Jesus. Which is good, I really needed him then, now and forever.

This journey was hard. I can only imagine how hard it was for my mom. She had to hold the house together while both my dad and I where sick. She had to arrange cardiologist appointments, oncologist appointments, emergency hospital stays and visits, she had to work, and feed us, and make sure we went to school. She had to break up the stupid petty fights my brother and I had. She held it all together when anyone would understand if she fell apart and ran away. And that is the reason she is my second hero.

My life with my dad was a blur of visiting hospitals, trying to beat each others high scores on the hand held yahtzee. A blur of going to the movies, hospital food and riding the bed. A blur of dad being healthy then sick, then healthy then sick. My life with my dad was a blur of laughter, love, tickle monster, horror movies, and him yelling at us to clean up our rooms. My life with my dad was a blur of my mom changing IV's in the living room, oh him laying in his hospital bed in the living room. Of him sleeping downstairs and hearing him snore. Of both of us being sick.

My life with my dad was a blur of him not being there, a blur of him not wanting to see us because he was in such horrible shape. A blur of just little pieces of memories of him, because I didn't get to see him a lot. My life with my dad was a blur of wondering, does he love me? Because to be honest, sometimes it felt and looked like he didn't.

My life with my dad was a blur of living with grandma and her turning into a mom and I hated her for that. My life with my dad was a blur of terror hearing he was in the hospital again. But then of excitedment. Complete joy when we heard he was coming home.

One time my brother and I where staying with our grandma. We where outside playing with our cousin April when out mom called us and told us "dad is coming home". Dan was so excited that he want me and April to make up a happy dance song thing to greet him with. It was Dan jumping up and down and landing on a nail. It went through his shoe into his foot. But it didn't break his spirits. After the first shock and pain, after it was pulled out and his foot patched up, he was right back to the excitement. My brother and dad had an amazing relationship. Something I wish I could say I had too.

My life with my dad was a blur of waking up to random people in my house. I remember one time I dreamed a phone rang and someone I knew but didn't live with us answered. I woke up to the phone ringing, my grandma answered it because in the middle of the night my mom had to take dad to the hospital so he came over.

My life with my dad was a blur of hanging out with cousins while my mom, dad, dads parents, and dads brother go to Wisconsin so my dad can get a bone marrow transplant from my uncle. It was a blur or surgeries, my had a fake hip.

My life with my dad was him taking odd jobs to make money. At one point in life he was a my bus driver. I remember the exact day my dad died. I remember everything that happened.

It was a school day. My dad was my bus driver. I always made sure I was the last one off the bus just to say bye to him. But me being the 11 year old that I was just mumbled bye and got off the bus. Its what kids do the don't want to show love in front of friends. That day when I was getting off the bus something in my head was yelling at me, telling me to hug him and tell him I love him. I fought with myself the whole length of the bus. My head wouldn't let up it just kept screaming TELL HIM YOU LOVE HIM. But I just couldn't so I mumbled bye and went on my way. Later that day, near the end of class my mom came to my school to give me a key to the house. She told me that dad got sick and was in the hospital so I needed to let myself in. Which is normal, I've been doing that for years. I got home, and waited for my brother. My mom finished her bus rounds (see too drove a bus, the couple that works together stays together) and went straight to the hospital to see my dad. Late that night my grandparents came and picked us up. It was getting bad. My dad had pneumonia, and because of the cancer his immune system was shot. Fluid was filling his lungs, he was turning blue. My grandma grabbed her rosary and took me and my brother up to her bedroom to pray. Next thing that happened was we got taken over to a cousins house. My grandparents wanted to be with the son. So we slept at our cousins. My aunt said she would wake us up in time for school. I woke up at 6. We where suppose to get up at 6. And I remember laying in the top bunk of my cousins bed watching my cousins clock blink, 6am 6:02 am. When it got to 6:30 am i started getting worried, confused and scared. I wanted to get off the bed and go find someone, talk to someone. But I couldn't make myself move. I knew something had to be wrong. I laid in bed trying to make myself move. Eventually I got down and left the room. I passed my cousins bedroom and he and my brother where playing video games. I walk into the living room, and see my mom, aunt and uncle sitting there. They where so still, talking so faintly. That's when my mom pulled me aside and told me what happened. My brother came in and we all cried today.

The next few days where horrible. My mom told me how our neighbor came over and asked what Dave was up to and she had to tell him. The super had to tell all the kids on the bus. Mom made sure that Dan and I went and played with the neighbors like we always did. That was the day, that I danced in the rain. It was a Tuesday my dad died. So we didn't go back to school until the next Tuesday. I remember the wake. I've never seen my uncle cry before, and it wasn't something I ever want to see again. One of my best friends from school came to show support. My uncle and aunt flew in from California. Our neighbors came. I remember my neighbor just hugging me and letting me cry on her chest. I remember my mom bringing a pager and a gun to be put in the casket to be buried with him. She accidentally left it under a chair and had to put it in the day of the actual funeral. The day of the funeral I didn't want to go. I didn't want to get dressed. I didn't want to shower. Nothing. My mom took me to the bathroom and told me it was okay to cry. And told me that if I didn't want to show it I could cry in the shower. So I did. I showered and cried. Picked out an outfit my dad liked and cried. Got dressed and cried. We put his canoe on top of his bronco and took that to the funeral home. He would of loved it. We did the funeral thing and then we went to the ceremony. It got to the point where we went to put flowers on top. My cousin almost fell in. It gave us a very needed laugh.

My dad Is my hero. He taught me how to fight. So when people tell me wow your so strong, I think of him. He was the guy, beaten up from cancer yet still went outside to play catch with me. He was my dad and I love him. And I hate myself for not saying goodbye.

This has been the hardest thing for me to write but I'm glad I did it. The world needs to see how strong my dad was.

10 years ago tomorrow: my worst mistake

2010-10-15T18:13:00.000-07:00

I would be posting this tomorrow, but tomorrow is my brothers wedding. So tonight it is. I want to tell you a story. A very painful story for me. But my hope with this post is that maybe, someone, somewhere will learn from it.

Life is to short, say whats on you mind. Do what you want! And most importantly, tell the ones you love, that you love them.

Okay, October 16, 2000. I was 11 years old. It was just 14 days after my 11 birthday.

Let me just explain a few things. My dad, had cancer. Acute Myeloid Leukemia. He was diagnosed when I was about 6 years old. I'll remember that day forever. But that's for another post. My dad and I didn't get along the best. It was the pre-teen thing. We where both moody and sick. I remember one day giving him a hug and him asking me "what the hell are you doing?" I remember wondering, does dad really love me?

October 16, 2000. It was a normal day. A Monday. My dad drove my school bus. I always sat in the back seat so I could be the last one off, I wanted to be able to say goodbye to him every morning.

That morning it was different though. While I sat there in the back of the bus my thoughts wouldn't leave me alone. Something was eating away at me. Did dad really love me?
My mind just kept shouting over and over! GIVE HIM A HUG! TELL HIM YOU LOVE HIM!

But me being a stupid kid, I mumbled goodbye and walked into. School was normal that day, expect for that one feeling. You should of told him you loved him.

Near the end of the day my mom showed up in my class room. She was there to drop off the house keys. Dad was sick, he was taken to the hospital. My stomach dropped. I tried to convince myself that he would be okay. He just got sick a lot easier because of the cancer and chemo.

But that feeling was still there, stronger then ever.

I got home to an empty house that afternoon. The rest is a blur.

Grandma coming to pick my brother and I up. Kneeling by the bed and praying. Grandparents rushing to the hospital because he wasn't doing well at all. Climbing into the top bunk at my cousins out. Not knowing what was going on. Knowing dad was very very sick.

I went to sleep, not knowing that I'd never see him alive again. I went to sleep kicking myself for never saying "I love you"

--- I'm sorry day, so sorry!---

The Government is slow : My amazing day

2010-10-14T16:52:00.000-07:00

As most know today I had my littlest heroes shoot! For those who don't know what the littlest heroes is go here.

http://www.inspirationthroughart.org/

My photographer was lovely and she brought her niece. They Did a great job relaxing me and my mom also came and helped me relax and got me to laugh.
I can't wait to see my photos and share them with all my amazing heart friends.
Sometime around October 26.

But just before my photographer showed up today I got this call. That's really what this post is about.

A little over a year ago I found out I would need my second open heart surgery. Sixth heart surgery all together. That's when I began trying to get medicaid. Which they told me, and here is an exact quote "Idaho medicaid has nothing to do with you health." Meaning they drop you at 19 and they don't care how sick you are. They don't care if you're facing a life and death situation. You can't get back on it unless you are pregnant.

That's when I began the very long process of filing for SSI disability.

But I also decided to write to a bunch of people. Bring their attention to this. This wasn't right. Not even a little bit.

I wrote to the congressman, the news channels, papers, even the president.
Well today I got a call from one of the head ladies at the medicaid offices.
The letter I wrote to President Obama was forwarded to her!
She wanted to see how she could help me.
She asked if I filed for SSI. I told her how I'm waiting for a court hearing.

So that's when she told me she was going to send me a letter. With links, and other resources. Something to try and help me get the health insurance I need. She was going to look around and see what she could do to me.

The government is slow. But sometimes, if you wait, and forget (like I did) sometimes someone out there will try and help you!!!

Of course, it will take a while. But at least finally, someone is on my side. Finally someone is willing to help!

Being different is okay.

2010-10-13T20:11:00.000-07:00

Last night I had an experience that changed my thoughts about my heart.
A very Powerful moment.

I use to think, I was different. Not normal.
My heart is half and very mended.
Its not what people are use to.

Last night, while cuddling, I could feel a heart beat. At first I thought it was mine. But when he hugged me a little closer I realized it was his.

So strong. So Rythmic. So perfect. So beautiful.

Thats when I thought of my heart.
Not so strong, random, mended.
Not perfect, not normal.

But it made me realize, thats okay.
Sure my heart isn't whole. It isn't perfect.
But it doesn't matter.

I love, just like anyone else.
Thats all that matters.

I may only have half a heart, But I love with a whole one.

Baby Of Mine

2010-10-13T18:14:00.000-07:00

--I wrote this post many months ago, But I am trying to switch over all my posts to this blog.--

Dear Baby Of Mine.

Hi there baby. I never had you, I never met you, but you where mine.

You where the hope I felt whenever I wanted to give up. You where the light at the end of the tunnel. You where what made everything worth it. I was striding towards a goal. I had meaning. You where what I thought of when I played dolls. When I played barbies. I dreamed of the day that I would have you. I dreamed of you and many siblings.

And now here we are. I've lost you. I've lost you but I never even got to have you. I had open heart surgery as a baby but I never thought oh maybe I can't have kids. Stupid Stupid Stupid Stupid Stupid.... Cause now, here, I just lost the best thing that hasn't happened to me. I've been told by a lot of doctors, that my heart just can't take me having kids. My body just wouldn't be able to handle it. And if I did have my own child, well, you might be born with a heart problem like me. I wouldn't want to do that to you baby. See, even though I never met you, I never got you. I love you more then you think. More then I even knew I could love someone.

Months ago in June 2009, I was trying for you. Oh man did we try for you. He wanted you, sure, but I wanted you even more. And then one day, I wasn't very late. But I had a symptom or two. I didn't want to jinx myself, or disappoint my self or get my hopes up. So I never mentioned it to anyone, anyways, you would of only been a tiny speck. About a month. But then in the shower one after noon it happened. I didn't even feel it happen. I just looked down and there where a lot of clots. And I mean a lot. More clots then I've ever had in my life. I kneelled (sp?) down on the shower floor and tried to stop some of the clots before the got to the drain. I'm not sure what exactly I was looking for. Maybe some sign of you? I don't know. Would you have showed? Would I have been able to see you or where you to tiny? I stared at the clots for a minute more. Not exactly sure what I was looking at anymore. Then as quickly as I knelt down I sprang back up washed my hair and got out of the shower. I don't know what happened that day. I never mentioned it to anyone for a while after. Your daddy was in my bedroom doing something. Oh boy was I glad he didn't join me in the shower that morning. I didn't mention any of this to him.

I explained what happened to my friend and googled it. I believe it was you baby boy. My Shawn David. See I dreamed about you a week or two before. The dream was so real! I saw you, I held you. I felt the love of a mother for her baby! Ill still remember that feeling. I remember putting you in your crib and watching you sleep. I don't think this would have been so hard if it didn't feel so real! It felt so real, and I was having symptoms and I thought maybe it was a sign. But then the clots.

Maybe it wasn't you. Maybe I just wanted you so badly I just made the symptoms up. But honestly. I do believe it was you. I don't care what people say about me anymore. I believe it was you baby.

I had my 6th heart surgery 10 months ago. And before that I was told "NO YOU SHOULD NOT HAVE CHILDREN!!!" My cardiologist thinks it might be possible. But it would be tough on my body, my heart. I would have to have you via C-section. But it could be very dangerous. And then there's the thought, I have a higher chance of having a CHD baby because I myself have a CHD. I don't want to do that to you baby. I love you to much to put you threw what I've been through.

So here I am baby. I'm stuck with 4 options.

1- have my own - which is pretty much out,

2- surrogacy - no one will do that for me, I've asked plus we still have higher CHD chances

3- don't have any kids at all..

4- adoption. which is the most likely case.

But baby of mine. I need to apologize. I dreamed of you for so long. I've loved you for just as long. I never got you and I miss you so much! I think of Aiden's mommy and daddy, and Cora's mommy. I think of all the other parents who have lost children. I can't even begin to imagine what its like.

Baby of mine. I loved you since the very first time I picked up a doll and said I'm gonna be a mommy. But now, you'll never come to be. You'll be staying up in heaven with Jesus, and Cora, and all the others. Or maybe Jesus will decide to send you to another loving family. Which baby boy, is good. I hope they love you as much as I would.

I love you baby boy, this is our last goodbye.

Beliefs - not a christian

2010-10-11T13:10:00.000-07:00

I'm tired of labels. I'm tired of fighting. People tell me I'm un-christian, I'm a sinner, blah blah blah. So on and so forth.

Let me clear some things up. I havn't called myself a Christian in a long time. Why? Because I realized I don't follow the rules.

I have stopped telling people "ill pray for him" and turned it into "Sending loving thoughts" because I dont find myself ever really praying.

I believe people don't have a choice who they fall in love with. I believe sitting in church and being bored out of my mind would be and insult to God, so I don't go.

I swear, I get moody and I take prescription pills (which I've been told is wrong).

Sure I know some things are wrong, MURDER, THEFT, HURTING ANOTHER PERSON.. The big stuff.

Yes those are bad. But why is falling in love with someone of the same sex considered bad? How is saying a word consisdered bad?
I refuse to believe that someone is going to hell because they happened to fall in love with some one who has the same anatamoy as them..

Now Im not saying I don't believe in God. Because I do. I honestly know he's out there. I believe in him and love him.

Im just so tired of everyone else's judgment

I'm scared.

2010-10-10T11:03:00.000-07:00

I'll be honest. I act brave and proud. I am a CHD warrior. But, I am scared. The nightmares are starting again. The pain is coming back. So how much longer until I'm in heart failure again?

Let me tell you a little bit about my life before my last open heart surgery. I doubt nightmares had anything to do with anything, but there was alot!

The pain was horrible.

I had trouble breathing. I could put my hand on my chest and feel my heart beat. So strong, so hard. I didn't know I wasn't suppose to feel it by just touching my chest. The heat made me so sick. I'd get so hot and so nauseated. If I moved to fast my heart would pound. And it got to the point where just walking room to room just hurt so bad. My heart would hurt when I moved. It pounded and the pain would be so bad. I got the worst headaches. It got to the point where I would just sit and cry trying to wait for it to pass. It always did pass eventually. But then I'd have to move again.

I know what you will say OMG! Why didn't you go to the doctor alot sooner. I know I know, I should have. But I was trying to ignore my heart defect. But I learned my lesson. When I finally did go to the doctor I learned some scary stuff.

* I was in atrial fibrillation and was at a high risk for clots and strokes.

* My heart was dilated and up against my breast bone.

* My fontan surgery wasn't lasting.

* I was in heart failure

* I could drop dead any second

* without surgery, they only gave me 5 years to live.

So I had my second open heart surgery (6th heart surgery all together). They did the maze procedure to fix the A-fib. They removed part of my heart. They did the fontan revision, and they implanted a pacemaker.

They told me a week after surgery that my heart was looking great and there was hope for no more surgeries. But If I did need another surgery It would be a transplant because I was all out of options.

Its been a little over a year now. My last cardio app in march went well. They told me my heart looked good. They even told me I could move my apps to every 6 months instead of every 3. But I'm still having issues.

I've been having alot of issues with tachycardia since surgery. I've gone to the ER at least 3 times. They always tell my I'm fine. And when they tell me I'm not fine and should see my pacemaker doctor, I do go, and he then looks at me and says.. well now your heart is acting normal again. We don't need to do anything.

Well the pain is coming back. This time is different pain. A more excruiating pain. It starts with a sore jaw. Then It moves into my chest. And then my chest, shoulders, and jaw just hurt. It hurts like a fucking bitch!!!!! This has happened twice. The last time this happened my aunt was talking to me. She stopped dead and just stared. She asked me if I was alright. Trying not to make her worry I was like yeah. She is like no Jess, You are whiter then white. Why are you so pale whats wrong.

And now, the old pain is starting again. The moving to much is making my heart pound again. I get so out of breath and tired.

Maybe I'm just a worry wort. But Im scared. What if the heart failure is back? What if my heart is dilated again. What if the surgery is failing??

Give me Strength

2010-09-29T12:00:00.001-07:00

Well I guess this blog as turned into a diary of sorts. A way to talk to my father. Which I guess isn't bad. It helps, at least I think. So here I go again, I'm going to talk to my dad.

Last night, for the first time in a long time, I cried myself to sleep. I don't know why it happened. But you where just on my mind I guess. I'm thinking of October 16. The day I made the biggest mistake of my life. It's approuching quickly and this year there is more to it. This year, marks 10 years since I made that mistake. This year, it is also Dan's wedding. I don't know why he picked October 16th. The day before you died. I wish I could ask him why, but I can't. Mom keeps saying well at least there is now something happy to celebrate at that time. But I don't see it that way. I can't see it that way.

I made the worst mistake of my life on October 16th 2000. And now, exactly 10 years later, I have to celebrate a wedding. He is my brother and I am SOOO happy for him! But it will be very hard on me. I need you to watch over me and make sure I don't break down during his wedding. Because I wan't to break down just thinking about it now. I'll be drinking and dancing, and you should be there with us. And you wont. And that just makes me mad.

But I will put on a happy face. I will be a part of that wedding. I will laugh, and dance, and drink. I will have fun, even though I am sad. I just need you to be there with me.

I love you dad.

Pity.

2010-09-24T17:05:00.000-07:00

Hi all, It's me again! As you already knew. Anyways. So I thought I should clear something up here. This is about my facebook statuses.

When I complain on my facebook status, I am not looking for pity. Or help for that matter. I post my feelings becaue it's one of my only ways of getting them out. And I know if I don't get them out thats just gona hurt me more.

So when I post something like "ugh I was I had a better phone"
I am not asking for people to offer to buy me a phone. I am not asking for them to send me their old ones. All I'm saying is just that. I wish I could have a better phone. But I know at this moment in my life I wont.

I am not happy with my life at this moment. This wasn't how it was suppose to go. But it has, and I use my facebook to vent my frustration over it.

And I appreaciate everything you all do for me. All the offers to help. But thats not what I'm asking for. I just post it to get it out. To vent because I know some of you out there understand. And all I really want is prayers for a better life.

My Other Story

2010-09-10T19:18:00.001-07:00

I know its hard to see, but yes, that's what you think it is. And no, I am not suicidal.

I never shared this story before. Never publicly. Never with anyone besides close friends. But I feel it's time. Time to get it out of my mind. Time to open myself up so I don't have to hide the struggle I'm going through anymore.

I'm not gona be one of those people who said, I saw this coming. We all saw this coming. Because I didn't. I mean, when I look back on it now I guess I can say "hey yeah thats not right, maybe this is a sign of things to come". But I didn't pay attention I was a kid. And my mom never paid attention because I was a heart kid, and heart kids are more emotional then 'normal' kids.

I remember one moment as a child, thinking OMG I am ugly. And I remember wondering if my dad loved me. But I didn't think anything of it. Until now. Here is my story. The UNTOLD story. Not my CHD story no, my Bipolar story.

I think I was 14. I remember being in 7 and 8th grade. I remember thats when I began getting depressed. When I began to really feel ugly. But then 9th grade started. I finally made a really good friend. We met in spanish class and we clicked instantly. The first time we hung out, we snorted some white stuff and then went and TPed a church. Thats when it began.

Drinking, smoking and huffing. Thats all it was for a short time. A very short time. Getting high and music, it was a relaxing life for a bit. But then that nagging feeling came back. That you arn't pretty. You arn't loved little voice in the back of my head. I needed an escape. I needed out. Thats when I began to stop eating. For a while, that was enough. All I did all day was plan my food intake, weigh, count calories and make weight goals. I was happy when I lost my first 5 pounds. But then it got harder to lose weight.

What I didn't realize was I was battling an eating disorder. I thought I was fat, I thought it was normal for me to want to lose weight. When people told me I was to skinny and they wanted to buy me a cheeseburger I got pissed. I thought they where laughing at the fatty. So I began working harder. Not only did I limit my eating I began making myself throw up what I actually did eat.

I slowly lost weight but it wasn't fast enough. My mom was starting to wonder a bit. Asking me if everything was okay. Everyone at school asked me how much weight I lost. Only 10 pounds, geeze not a big deal. I was so tired, I told my gym teacher I didn't feel good and needed to sit out. She looked at me and ask if I had been eating. I told her yes. She looked me in the eye and said "YOUR LYING".

It got even harder. My mom was making me eat in front of her, my teachers kept talking to me about me eating and all the other kids where staring. I felt fat, ugly, and pissed. Thats when It got to its worst. Thats when I pulled out the razor blade. I remember exactly how I tried cutting. It was after watching an episode of degrassi: the next generation. I remember watching that episode. I remember seeing Ellie, I could tell she felt like I was feeling. But I didn't understand how cutting helped her. I thought she was a crazy lunatic. I just couldn't see it. So I tried it.

Well my eyes where opened. The pain, the relief that came with the pain and blood. I understood. I got it. And thats when it go bad. I cut so much I went through so many band aids. About a box a day. I cut and let it bleed for a bit, but then put a band aid over it. I hated covering it up but I was on blood thinners. And If I didn't cover it up the blood would seep through my sure and my mom would be able to see. I began wearing long sleaves all the time. I went through all the band aids in the house so I had to use toilet paper and tape. I stole my moms box cutter. I spent an hour in the bath cracking open a despoisable razor to cut with. I intentionally bought eye liner sharpeners. Unscrew those and the blade came right off. It worked perfectly. And the razor was small enough I could carry it around we with at all times.

Because it came to the point where I needed to make sure it was with me. I needed to make sure I could cut whenever I needed to cut.

I remember showing my mom, the first time I cut. I remember we where sitting on my bed crying, talking about the eating and I showed her the cut. She asked me if I was trying to kill myself. Honestly, no I wasn't. I've never serisouly thought of killing myself.

After that talk my mom watched me closely but I got smarter. I found ways to hide the cuts and to get out of eating or getting rid of food.

I remember one time me and my mom watched the degrassi cutting episode together once and she looked at me and asked, should I check your arms? I told her no. Thats when she knew. So thats when I began cutting my legs. The whole time, losing weight along the way.

Eventually the school got involved and kids found out about the cutting. I begged and begged them to not tell her. But they did. I remember my brother coming into my room and going "WHAT THE HELL ARE YOU DOING?" I think he was scared. He bagan to cry. And then I cried. I showed him my legs and we just cried.

Thats when my mom got pissed and began searching my shit and took all my razor blades. The ones she could find anyways. She began to weigh me every morning. Told me as long as I was 100 lbs or m0re then she wouldn't push it to much. Well I knew I wouldn't weigh that one morning so I put extra clothes on. I still only weighed 95. Thats when she got mad. Thats when the watching bacame 24/7. Thats when I finally told her "fine Ill go to BHC" Just to get her to leave me alone. BHC is behavorial health center.

What she didn't know was how bad I had gotten. She didn't know about the extra clothes. She didn't know that I had began cutting my feet, hoping to cut the veins. I wanted the blood.

I went to BHC and was watched closely. I wasn't allowed to go to the bathroom after I ate. I had conselling. After a week, a horrible horrible week my mom took me home. But that didn't stop me. I still cut and hid it, I still worked very hard to lose weight. And cried when my weight went up by a .5 I went to counslers weekly. Thats when I was diagnosed with bipolar. I had 2 different conselers. One kicked me out after he saw I was still cutting and wouldn't talk about it. The other one, IDK why I stopped seeing him but I did.

But I was still cutting and still not eating. I'm not really sure how I stopped myself. But its been about 2 years since I've last cut myself, or at least cut myself to make myself bleed. I still scratch myself. And if I had a razor blade, which I try to not let myself near, I know Ill do some damage. Draw blood and make another pretty little scar. I look at myself daily and go "5 lbs and you'll be good"

OPEN HEART SURGERY

2009-09-21T16:17:00.001-07:00

Open Heart Surgery - the unexpected.
It was a nice day, October or November of 2008. I had my buddy Hunter. The two year old I watched twice a week since he was 3 months. The cutest little boy, I love him like he’s my own. We had music on and where dancing when the phone rang. I looked at the number and immediately knew it was a doctor.
“Hello” I say expecting Julie from Dr. Fry’s (my cardiologist) office to answer me. But what I heard was “hi this is Kendal from Dr. Emge’s office, I’m calling to set up your CT scan.”
My first response was “what the hell Kendal from whose office, and what CT scan.”
She told me a story about how Dr. Fry referred me to Dr. Emge, because most children who have the fontan done need the fontan revision. And Dr. Emge knew more about it because he‘s a pediatric cardiologist”
“what? I never heard about this.”
“Oh,”
“can I call you back?”
So I call Julie and ask her what’s going on. She apologizes profusely. She was on vacation and the other secretary was suppose to call and let me know. Long story short, I made an appointment for a CT scan. Then immediately took Hunter over to my moms. I walked in and immediately hugged her and explained what happened.”
That’s when she apologized. She told me that they told her this might happen. But I was doing so good that she never mentioned, plus she thought she mentioned when I was younger. If she did, I don’t remember. So that’s when my open heart journey begins. I met Dr. Emge, and immediately liked him. I had my CT scans and a bunch of other tests. All the while my mom was by my side. I wouldn’t have made it without her. The first visit Dr. Emge told me I was in atrial Fibrillation (the top part of my heart was beating right) and said he wanted me to have a cardiac catheterization. So within a couple weeks I was on my way to Boise. Me and my mom stayed at the Ronald McDonald house, they where so amazing there. And the night I got in I got to meet Dr. Womack. He was the nicest person ever! He talked to me and explained everything. He even explained everything for a tenth time when I started to cry and said I still didn’t understand. He helped me and my mom understand, everything. Understand what he would be doing and why I might need the surgery. So the next day I check in, 7:30 am I think? And I met my nurse, and Julie (the lady I always talked on the phone with). She came right in and gave me the biggest hug and the first words out of her mouth where “I feel like I already know you.” Then she hugged my mom. Then Womack came in, and then I got the good drugs. They decided it was the time to ask questions, “boyfriends name?” and got disappointed when mom already knew about him. They even tried to make me princess wave as they where wheeling me down the hall. My mom told me it was hilarious to see the big anesthesiologist princess waving. And I didn’t wave. I remember coming to in recovery. I was coughing and it felt like a lung was about to fly up. The first words out of me where “did you put a tube down my throat?” They told me it was a possibility but most like it wouldn’t happen. Julie answered “yes you where coughing to hard and where waking yourself up.”
Next question
“did you cork anything?” or at least I think that’s what it was called. It would have been to help the atrial fibrillation. They would have put a spring type thing in to block some of the veins that help beat. Or, something like that. They told me “No”
Next question
“where’s my mom?” they told me “waiting room”
Next question
“what time is it” I don’t remember what they told me. Maybe that’s why I asked it like ten times.
I had to be on oxygen and I hated the nose things so I asked for the mask. Either way it was annoying but the mask was the less annoying of the two. There was a point when my nurse was gone and I was all alone. Only for like a minute. But it was that minute that I had to get extremely hot. So I sit up and took my socks off. My nurse came back and looked at me like I was crazy. I wasn’t suppose to bend my leg, and apparently your not aloud to sit up in recovery. I noticed that, I saw a bunch of people around me just laying there. They in a way looked dead, though I knew they weren’t its recovery after all. Within a short time. I was anxious and wanted out. So sooner then anyone really thought I was being moved up to 3 telemetry. And I got to see my mom! I remember her saying some joke. And I was like “woman I’ll kick you.” Dr. Emge and all the nurses where looking around like uh-oh what should we do and all of a sudden Julie spoke up. “use your left leg!” They went in through my right, so I wasn’t suppose to move it for a while. After that, someone mentioned waiting for a back board so they could move me from the gurney to the bed. But they decided that all of them, including Dr. Emge could do it themselves. So they moved me. The rest of the day was filled with visits. Dr. Emge. Dr. Cadmen, the electro physiologist (pacemaker dude as my mom likes to call him). And a nurses assistant named Drew. She was nice, the nurse was okay, but I really liked Drew. It took them forever to get me aspirin for my headache. And I started to get a little anxious. I was getting annoyed and the headache wasn’t going away and I couldn’t move my leg. But finally after a few hours, I got food, my Prozac, and finally my aspirin. This is about the time Dr. Womack came in. He showed me pictures and videos about from my cath. And then he asked me “you’ve been a lot of trouble, are you worth it?“ my answer “Oh hell yeah I am, I am awesome.“ And then I was finally able to leave. For another night at the RMH. Again, they are amazing and I totally support them 100%. After that it was various visits to Dr. Emge’s office. Waiting for a date for my surgery and getting echo’s EKG’s and blood work. Dr. Emge was amazing. He totally understood how stressed I was. And there was a day when I felt he wasted my time and we where talking, joking, but he said something that hit a nerve, and I just had to walk away before I got angry. I left. He never held it against me. Just have to say I love my cardiologist. I finally got a date, July in Salt Lake City, Utah. The day before the surgery they called me and said they moved it. This of course made me mad. I went in to get my pre-op tests and talk to them about it. I met a doctor and I wont name any names. But he was a J@ck@ss and I let him know. He then proceeded to have another doctor tell me that I am in heart failure, I could drop dead any minute, and if I don’t have the surgery the give me five years to live. Then they told me they wouldn’t do the surgery. Which made me angry. It made my brother angry, he wanted to kick some @ss. Thanks Dan. I love my big brother, just have to mention. But it turned out for the very best. Dr. Emge made some calls, and found a surgeon in Spokane, Washington. Within a couple weeks, I was in Spokane. This time just with my mom and grandma, Dan couldn’t come. Wish he could have. A couple days before the surgery I met Dr. Worrall, the surgeon and Dr. Anderson the electro physiologist (again, my mom called him the pacemaker dude). My grandma managed to embarrass him with a sex question. Thanks grandma, we all needed that laugh. I felt 110% better. I liked theses guys and I felt so much more confident. So I got my Pre-op tests. Then had a couple days, to wait. The day of the surgery came fast. July 24, we where up at 5 am, and at the hospital checking in at 530 am. I don’t remember much of that morning just waiting and getting called back. My mom was the only one aloud to come with me. But eventually my mom got to bring grandma in. That’s the last I remember. Apparently when they where about to take me I grabbed my moms had and told her “I’ll be back” I made her bawl. I’m sorry mom, and I love you, your are the best!

Now there where many things I expected after open heart surgery. The thing I expected most was pain. But what I got was totally different.
The next thing I remember is waking up coughing. I was in the pediatric intensive care unit (PICU). My eyes where so blurry I couldn’t see anything. And I heard someone say “hold your pillow” I didn’t know who it was or where they where but of course being me, I argued. But eventually did it, and it helped a lot. I remember coughing, my throat was so dry I thought it might crack. I remember asking “what time is it?” 2am. Then every 5 seconds. Water. But I couldn’t have water. So I got ice chips. And I just kept asking for them. And the nurse was like “you know what, its best not to throw up after open heart surgery” But I kept asking for them anyways. In between asking for ice chips I asked for two other things, the time, and most importantly my mother. She held me off till 5am but finally called my mom. I really wanted to see her. Next thing I remember is my mom coming in “Buda!” and gave me a huge hug. I remember her giving me a monkey pillow, from my grandma and a teddy bear from her. (I collect pillows and stuffed animals) I heard her asking can I bring her one of her blankets? I think maybe I said I was cold, I am always cold. And then she asked me “daddy or cherry?” and of course, I said daddy. it’s the closes thing I had to him being there with me. Next thing I know she’s back and putting the blanket over me. I swear it was 2 seconds. But I know she couldn’t get to the hotel and back that fast. Then one time she comes in with a little stuff dog from Dan. And then my patient advocate sent me flowers. They where trying to show them to me. But they weren’t aloud in the room so they where trying to show them through the door, still my eyes where to blurry I couldn’t make them out very well. And I was so drugged that when I actually got out of the hospital later and went back to the hotel I saw them and ask my mom “who sent you flowers?” She reminded me. There was three days of stupid drugged state. I only remember parts of these days. I remember my voice being really low, and thinking it was just a part of coming too. I remember my mom, she was aloud to give me a popsicle one time. She gave me my favorite. A red one. And then she put it down, and next thing I know she took a bite of it. And me, being a smart @ss said “ah you ate my popsicle.” I think this really helped my mom, to hear me joking. I don’t know for sure if it helped her, but it did help me. I remember drinking/eating the rest of the popsicle later. And getting a phone call. I’m not 100% sure when the phone call came, but I do know it came. Judi L. Called me. A lady I met on face book. She called to see how I was. It was the first person I talked to beside my mom, grandma, and nurses. I thought it was amazingly sweet. I never met her in person, and she still cared. So I got to talk to her for a minute. She asked how I was. She then told me that her and her son called the gift shop and eventually something would come to me. It came later that day. I was shocked how fast it came and didn‘t think it was from her. I opened it. And read the card. Sure enough it was from her and her amazing son. It was a beautiful heart necklace. Thank you Judi, I love it. You don’t know how much that phone call meant to me.

It was Sunday the 26 when I actually began remembering full days. That was the day my mom, the nurses and I realized that the voice just wasn’t me coming to. That’s the day I realized I had IV’s in both wrists. And that both my wrists where as purple as a plum. That’s the day I realized there was a tube sticking out of my neck and there where 4 sticking out of my stomach. And that I had a catheter. I figured I would, but I didn’t know it was there until that day. I wasn’t expecting the other tubes. I learned the neck tube was a central line and the other four where chest tubes. The rest of the day I remember talking to my mom and grandma, and joking with the nurses. I finally got to eat, and all I wanted was the fruit. Of course I had to eat slowly because my stomach wasn’t fully awake, but it was nice to eat. I remember them flushing the lines every four hours and the nasty taste of the saline. That was they day I realized I didn’t have much pain. Yes there was some but nothing like I expected. I was expecting excruciating pain. But what I got was soreness all over, nothing to horrible. And a headache, the worst headache of my life. The morphine wasn’t working so I asked if I could have something else. They looked at me like I was crazy. Apparently morphine is what the always give. But they gave me vicodin instead. It helped but put me to sleep. Every time I slept I held a pillow. Actually I held a pillow all the time. Who knew when I would begin coughing. Later that day I got out 3 chest tubes and the central line. I was afraid it would hurt when they pulled them out. But it wasn’t that bad. They told me to breath. It felt a little weird more then painful. The next day I got the last chest tube and catheter out. That was the day I was finally mobile. Its also the day I found the my right leg hurt any time I moved it. I sat up and put my legs on the floor and it would shake. I would sit for a minute and try and get it to stop. It never did so I would stand, it hurt horribly. But I managed to stand on my own. I got to actually use the bathroom, and then got to sit in the chair. It was nice to get out of the bed. Finally eat sitting up, in the bed I was sitting, but the chair is always better. I remember the nurse coming in to give me a sponge bath. At first it was a little embarrassing. But then after a second I though, what the hell, who cares. I’m so freaking dirty I was glad I was getting washed. I watched her wash me. And noticed that I had tape of my scar. My pacemaker scar was showing but there was tape over the other one. Darn I wanted to see it. Then I noticed that a lot of hair was stuck to the sticky’s on me. The nurse noticed too, she told me it was from the anesthesia. The rest of that day wasn’t to bad. I was up and to the bathroom a lot, it was kind of annoying but funny, I kept having to unplug myself to get up. And I watched television. When it got later my mom left. I always hated this part, I don’t like hospitals. But I was brave and I would kiss her goodbye and watch a little television or listen to my ipod and fall asleep. The next day the told me I needed to shower to be able to go up to the adult cardiac ward. I was so excited, not about moving, I liked the PICU nurses. But about the shower. My mom went and got me my clothes and my soaps, Of course, she had to come with to help me. But that wasn’t so bad. I got in the hot shower and just sat there for a couple minutes. It was amazing. And then I made myself wash and then let my mom wash my hair and sat in there a couple minutes longer. She had to help me get dressed. And brush my hair. But it wasn’t so bad. I felt amazing. I walked back to my room, limping the whole time. And the nurse where staring at me. But I was happy. Later they told me that reason they where staring at me was because the couldn’t figure out who I was. Then they realized I was one of their patients. They where shocked at how good I looked. Later that day I was moved up to the adult ward. It was a little said, I loved the PICU nurses. But I had to go. I got up there and wasn’t a huge fan of them. But I only had to stay there two nights.
My nights in the hospital, on both floors where a little annoying. They would come in every four hours to flush the lines. And to give me pain pills. They where shocked when I said no, I didn’t hurt. Well I did but it wasn’t to bad and I didn’t want the pills. They told me I have a VERY HIGH pain tolerance. Every night and every day I had breathing treatments. And every morning after the chest tubes where out around 4 am I got chest x-rays. My doctors came to see me every now and then. Dr. Jensen the other electro physiologist came to see me when Dr. Anderson was out. I also had a couple Cardiologists come and see my. Finally the last day in the PICU Dr. Anderson was back. He check my pacemaker. He couldn’t get the machine to work so I told him it didn’t like him. He then threw something in the waste basket and was like “3 points!” so me I was like Bullshit, that’s 1. We joked the rest of the visit. When I was moved to the adult floor I got an echo and Dr. Jensen came back. There was a student with the echo tech. She kept asking “where’s this, where’s that?” he would tell her “she doesn’t have one.” She found the fascinating. I didn’t mind, I hope she learned a lot. I finally convinced Dr. Jensen to let me go down to the cafeteria with my mom and grandma. He didn’t want to at first but then said okay. YAY! I was tired of walking the halls. So I finally got to see other parts of the hospital.
The day the discharged me was annoying but wonderful at the same time. I had to wait for a chest x-ray. There was still a little fluid buildup in my lungs. But they upped my diuretic dose (diuretics pull fluids from your body, and make you pee, a lot.) And I was aloud to leave. They told me to expect a week, if not more in the hospital. But I left on my 6th day. Of course I was excited. I didn’t have to stay the whole week. Sure it was only one day less, but I was happy. I wasn’t aloud to go back home for a few days. I had to go back for another chest x-ray a few days later. That’s when I was told the fluid was gone. And that I could go home. I was so excited. Dr. Jensen shook my hand and told me it was a pleasure. After we packed our stuff from the hotel we got in the truck, stopped at the drug store and started our 8 hour trip home to Idaho.
Being home was the greatest thing ever. I got to see my brother Dan, and Nate who is like a brother to me. I got hugs. And the helped get my stuff into my room. And moved my bed for me. They where awesome. The first week home was the hardest. I was tired and bored. I wanted to do things but I would get out of bed and be to tired to do anything so I laid back down. It sucked. But eventually I got better. The days slowly passed but every day I did a little bit more. I saw my cardiologist a week after we got home. Then again a couple weeks later. That day I got to see Dr. Cadmen again. He did a pacemaker check and told me I was in Atrial tachycardia. And I need a cardio version to shock my heart back into a normal rhythm. I’m still waiting for that, my coumadin level needs to be higher, but hopefully in a week it will come. It will be two months since the surgery in a couple days. And I am doing wonderful.
There was so many un expected things during this journey. But it was life altering. It made me more aware of CHD’s and it made me look at myself. I am so grateful for my life and am determined to love, and do things with my life. I am happier then ever.
This journey was the best thing to ever happen to me.

getting a date!

2009-05-13T17:40:00.001-07:00

i get a date for my surgery on the 18th. i cant wait. im so stressed and getting a date i think might help..or it will make me alot more stressed. I just cant wait to get it done

ahh my leg is hurting where i had my cardiac catherization done.

(i got a little camera happy and had fun editing them. this picture is one of my faves!)

just wondering...

2009-04-24T17:47:00.000-07:00

im just wondering if this is just idaho medicaid or medicaid everywhere.

Do you know what your state medicaid is like? Do you know what it takes to qualify?
Or do you know what the healthcare/insurance thing is like in your country?

These are things i think people need to know.
if it isnt just idaho they all need to change.

Just a thought
Jessica

more options..but i wont stop fighinting!

2009-04-24T15:22:00.001-07:00

So im finding more and more options for myself. I called my disability lawyer and actually talked to him today (finally been trying to reach him for 2 weeks now!) Turns out if i get my fathers benefits i will be eligable for medicare (not mecdicaid) (i thought that was for old people? must be some weird loop-hole thing) but that doesnt mean ill get it. Nothing at the moment is 100% and disability will take 4-6 months (such a long time to wait) (if there not lying which they do alot) to decide. Who says i'll even get disability..i never thought of myself as disabled..why will the government.. but im hoping.
i also emailed a good medicaid lawyer to see how much it will cost (my grandpa said he would pay for my lawyer if it comes to that..he's such a wonderful man and im so greatful for that) and what all it will take to try and sue medicaid.

My brother who works in the pipe fitters union talked to his formen the other day. They said the once i stress all my options and nothing has worked the unions all across the country (not just idaho) will start a donation for me. That is such a nice thing. So many people have responded to my story with positive and helpful thoughts. So many people want to help. It makes me cry how nice people are.
I never expected this. I just want to share my story and spread the word. but theres so many people wanting to help..its so nice and im extremely thank ful

even if my options work im still going to fight this. This is stupid. Things need to change..it just takes one person to say 'hey wait.' i'll be that one person. now all i need is for all you people offering to help, to spread the word. I know many said they would give money..and thats so nice (im still thinking of a donation button on here even though that is not the reason why i started this..but once i know about my options and i have no other choice i might.)
but what im tryin to say is if you want to help by giving money that would be great. BUT it would be even greater if you could help spread the word..please pass my story along to everyone you can. that would be even better then money.

I have written (any tips on who else to write??)
-the president (obama)
-Congressmen simpson (idaho)
-Hillary Clinton
-Ellen Degeneres
-Oprah
-Dr. Phil
-news channels 3, 6, and 8 (in idaho)
-N.Y. times
-Chicago Sun times
-Post register (idaho)
-Good morning America
-The today show
-Perezhilton.com
-Sweetin.com
-congenitalheartdefects.com
-people magazine.

(still no responses yet..but its only been a few days still hoping..if they dont respond in a week or 2 ill send more letters.)

thank you so much for all the prayers and tips and for the wanting to help it means the world to me!!
Jessica

liars!

2009-04-23T17:50:00.000-07:00

ahh dont you just love when the government lies to you??
I got my applications for disability today. I was suppose to read them over and make sure they wrote everything right. And get together a little bit more info for them. They said there was a pre-paid pre-addressed envolope to send the info back in. LIARS! no such thing was with the application. and they had a couple of things in there that i never said! or agread to. This is getting so stupid..How much more do i have to do for these people. Im fighting and working my butt off to try and get this going and they are just messing it all up..

grrr.

angry ramblings of
Jessica
thanks for reading and thank you for all the prayers and tips i am recieving.

{me and my wonderful boyfriend Kail, one more reason i want to have my surgery so i can spend a long happy life with him!}

p.s. alot of people have suggested putting a donation button on here because they would love to help. While i think that is extremely nice of everyone who wants to help that is not the reason i made this site..not at all. I just want to get the word out on how mess up medicaid is.
and while that is not the reason i made this site..it is coming down to that..it may be one of my only options so im thinking about.

thank you again!

grr..hospital told me i was getting my tests for free.. guess not just got a bill
i mean yeah they deserve there money..but if you tell me something is free i think you mean that it really is free.
if they hadnt said oh we are taking care of your bills for you it wouldnt be such a big deal. but no..they said free..ahh now i need to save more money.

pictures

2009-04-22T13:14:00.000-07:00

^one of my shunts^

^The day i was born, hooked to all the machines (they took this picture for my parents, just in case i didnt make it) ^

Me and my brother, who happens to be one of my bestfriends.

My mom and me, after one of my shunts was put in

my open heart story

2009-04-22T11:50:00.001-07:00

My name is Jessica. I'm 19 and I live in Idaho. I was born with a congenital heart defect called Tricuspid Atresia. Which means the left lower ventricle of my heart was deformed. I was a Blue baby. I wasn't aloud to cry because everytime I did I would turn blue because I wasn't getting enough oxygen.

i had to have 2 surgeries to put shunts in my shoulders so I could get more oxygen to my lungs. They happened at 3 months and 9 months. When I was 1 1/2 I had to have an open heart surgery. There where 3 kinds they could do. The first 2 didn't work. They third one, called the fontanne procedure was there last option. If it didn't work, I would not have survived. But by they grace of god, it did. I was a miracle.

Ever since then I have been on medicine everyday and have to see a cardiologist at least once a year. I've been fine for the most, until recently. I found out my heart hasn't been growing properly with me and I am not getting enough oxygenated blood to my heart and body. I need another open heart surgery to fix it.

I tried to apply for medicaid but they denied me because i'm 19, which means im not a child or elderly. And because i'm not pregnant. They told me straight out IDAHO MEDICAID HAS NOTHING TO DO WITH YOUR HEALTH. They told me if I apply and qualify for disability i may be able to get medicaid. Okay, anything for my surgery. Turns out that since my dad died when I was 11 and my family got survivors benefits until my brother and i graduated highschool that if i was considered disabled (which they told me i may not be) i would most likely get my fathers benefits back. But if i get his benefits back i will most likely be making to much to get medicaid, yet i still wont be able to afford my surgery. The hospitals have been great, giving me my appointments and pre-op tests for free. But i know they wont do the surgery for free, its just to much. Now i dont have many options. I cant work much because i'm always tired and dont have the strength. I do work but I cant afford the surgery myself. I can either get pregnant to get medicaid (but thats not the right reason to bring a baby into the world, and who says my heart could handle the stress of a pregnancy?) I can ask for charity. It will be embarrassing, but i will do it. I will go to churches and ask for dontation. I will put donations cups in stores and anywhere else i can think of. It will help but not enough, i live in a small town. My last option is wait. Not the best option, i dont know how long my heart will last.

I want to raise awarness to this. I cant get other insurance because i cant afford it, and because most insurance companys wont take pre-exsisting cases, especially when surgery is mentioned. I'm not really sure what else to do. I just want people to hear about this. I dont know if it will change anything but its worth a try.

What is medicaid for if you can't get it when you need it?

Thank you,

Jessica

[update] so my doctor says that he might be able to right a letter to medicaid and tell them why i need it and hopefully get it all turned around. I dont know what he can do, but its worth trying

plus he says the surgery can wait till we get this figured out. Sure, i think the sooner the better though.