Getting Use to Normal

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

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

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

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

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

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

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

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

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

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

I'm not use to normal!

It failed

Many things have failed in my life.

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

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

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

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

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

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

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

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

Its Back .. I need prayers.

My heart hurts..
Literally.

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

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

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

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

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

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

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

I need prayers.

A Fathers Love

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

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....

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

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!!