My local paper featured a story about my upcomming ECIC bypass and my moyamoya.  I wanted to share the link and the amazing ourpour of support I've had since it was published. I woke up this morning at 7:30 and checked out my article in the paper (which I will post a link to at the end of my entry).  I was so nervous having so much personal information just out in the open.  But I went to work, and minutes after I arrived my U.S. Senetor John Thune’s office called and said he was so touched by my article that they wanted to meet with me and help me with the process of expediting my medicade.  It was unexpected and I was so touched by it all that I actually cried. It was such a blessing and an answer to a lot of prayers.  A little bit later I had a call from a church that I use to take there pre-schoolers photos, letting me know they would be doing several offerings on my behalf.  Then I had a call from my U.S. rep Stephanie Herseth-Sandlin’s mother letting me know she read my article and she had called her daughter on my behalf… so about an hour later I had a call from Stephanie’s office.  And this was all before lunch!  Then it was off to my preoperative physical.  Which went perfectly.  Then I had a meeting with John Thune’s office, where they assured me that my medicade would go through before my surgery because the senator himself would be calling DSS on my behalf everyday until it went through.  The way it works is that it will be flagged as congressional interest, and then moved to the front of the pile.  The more a senator or congress person calls on my behalf the faster they will move.  They also said well the issue’s in Washington are important, I’m more important and would be one of his top priorities.  So today I’m very hopeful & grateful.  It’s been very humbling the outpouring of support and prayers I’ve had on my behalf.  Today has been such a blessing!


Here is the link :)
http://www.aberdeennews.com/apps/pbcs.dll/article?AID=/20100728/FRONTPAGE/7280313

Katie

Hey Katie

I'm really happy the urgency of your medicaid case is being notched up. Your story in this post is positive and I'm sure your confidence in the system and there people is improving.

The day any government official takes an interest in a member of publics health issues here in South Africa is the day pigs will fly. You are extremely fortunate.

Take care and keep us posted.
Mark (Luca's Dad)

P.S. Well done for getting moyamoya out there into the public domain through your article; any and all exposure is needed.

Hi Katie,
I read the article and your story was very touching.  I will pray for you and your surgery.  I work with insurance companies and I think it is terrible how they run our medical issues and how it seems they have all the power.  You did a great thing by having your story out there.  I pray your surgery goes well and you get back to your life.  My daughter had bilateral pial synangiosis in March, 2010 at Boston Childrens Hospital for MoyaMoya.  She was diagnosed in October, 2009.  She was having headaches, had focal seizures as a baby, passed out 3 times and started seeing spots which lead us to the diagnosis.  She is 8 years old.  She is doing fine now, she still gets tired, some headaches, but not as many and I worry about her everyday.  She will get a MRI/MRA in a couple of montsh for follow up with the surgery and angiogram in a year.  We have blue cross insurance, but we still have a bill that we are responsible for and we send a little bit of money every month,  which we are now on a payment plan with the billing department.  They were actually pretty good with working with us - I think as long as they get their money.
I know ther is medical assistance that is out there,  you can apply for disability, get turned down and then Medical assistance should pick you up.  Talk to a social worker and they can also assist you with anything you would need.
You are brave and sound like a really nice person, let us know how everything goes.  Stay strong!
Tammy- Amanda's mom.

Just an update!  I spent the entire day on the phone with DSS/Dr's.  At 5:00 pm today I got the unofficial news that I have been accepted!!!!!!!!  One call from a U.S. Senator expressing personal intrest is all it took!  It was almost like they were pushing me to move faster today. If they couldn't get ahold of me on my cell they would call my work number.  At one point I was in the middle of a photo session and they had my boss pull me out of it to answer a question.  I know I am very fortunate.  I live in South Dakota we are a tiny state population wise, our congressmen don't have much say in Washington so our congressmen don't get voted in for what they will do in Washington but for what they do for the people back home. I'm so excited it feels like christmas!

Katie,

Thanks for sharing the link to your article. 

I am so glad to hear that the Medicaid approval process has been expedited for you!  I have been thinking about you every day, praying that you would find that one person who would take an interest in  helping you - and it looks like you found him, and then some!

Best wishes to you - I'll look forward to reading an update from you post-surgery.

Stay strong!

Jennifer