Monday, September 21, 2009


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.”
“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.

Wednesday, May 13, 2009

getting a date!

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!)

Friday, April 24, 2009

just wondering...

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

more options..but i wont stop fighinting!

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 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
-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
-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!!

Thursday, April 23, 2009


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..


angry ramblings of
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 is coming down to may be one of my only options so im thinking about.

thank you again! 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.

Wednesday, April 22, 2009


^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

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,

[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.