Wednesday, April 22, 2009

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.


  1. Hey, that's great to hear about what the doctor said. Maybe his letter will help, you never know. :)

  2. Visiting via another blooger aka Joann who is a dear online buddy of mine.. I am sorry to hear of the troubles you are getting with Medicaid.. I hope that the words that the DR may use in sending a letter will be the words needed to be read by those over seeing this issue with getting benefits, never underestimate the power of the LORD...He has a planl..Praying for you here in Oklahoma

  3. Jess your a fighter... Hang in there and you know put some of that stubborness behind you... You know we love and miss you out here and Illinois and our prayers are with you, mom and Dan to.. Keep on them or go to congress people someone has to listen and follow through on this. Like they said you can go on with this........... Love Patti (aka old aunt Patti) Kevin and Kyle

  4. Hi Jess:
    I am an old friend of your mom's,we graduated together and had many an adventure together. Things are going to be just fine, the man up above is pretty wonderful, and he is with you always. You are going to be ok, and have many adventures of your own. Your in my prayers honey.

    Karen (Schneider) Yanowsky

  5. hey Jess forwarded your blog to a few friends out here.. Hopefully some words of encouragement help... and fight those lil.... yeah i got to keep it clean but u kno what i was thinking.....


    Patti aka AP