Tuesday, October 4, 2016


In my last post I talked about how exciting it was to be finally check marking some boxes off my to-do list! My eyes are still healing really well. I only get an occasional headache if I try to read or stare at a screen to long. I know it will take time, but I struggle with patience.  Shocker. I know.

Well, one thing I have to be REALLY patient about was getting Orkambi! As you know this was something Dr. B was contemplating putting me on back in March. Then I switched CF Centers (Read about why in THIS POST) and my new Doctor thought I should definitely try it. Orkambi is a gene-targeting med that tries to correct the defective mutation (DF508) and just came to market in July of 2015, but it has bit a price tag attached. Orkambi costs a quarter million dollars per year. Which means if I take the drug say til I'm 71 (its an easier number for math reasons) insurance will have spent 10 million dollars alone on this one medication for me. So you can see why it is a bit of a struggle getting it approved. Doc K. (my new doc at the Peoria Clinic) put it through for prior authorization in July of 2016. Insurance called me in late August, saying it was approved, but they didn't have my co-pay/ out of pocket figured out yet. So I waited and waited. Finally I couldn't wait any longer ( haha. no patience). A couple of weeks ago I called and asked how it was coming along. It turns out it was 100% covered, NO out of pocket or co-pays.

I'm very lucky, Andrew's insurance is very good. Granted, we pay a lot per paycheck for it. BUT, after we meet our deductible of $3,000 on me (which is our out of pocket) we are at 100% on everything. Medications, specialty drugs, Doctors, Hospitals, ER visits, etc. We hit our deductible in January with my first medication refill. So we are set! I couldn't believe they didn't even try to argue a case! YAY! They got it set up and shipped it out. I got my Orkambi last week and started it yesterday!

Since my 1st dose yesterday morning, I've only noticed a tighter chest and I need to blow my nose quite a bit, but that could be just allergies. So we will have to wait and see! I'm very happy to be on Orkambi and see what happens! I've been told as long as I can get through the adjusting period (between 2-6 weeks depending on person) that I can see some really good changes in my health! I'm still learning about what foods to eat with them, but I haven't had any big problems so far! To learn more about how I'm doing or more about Orkambi, go to my CF FB page and watch my daily Vlog updates!

Thank you everyone who volunteered to help me during Orkambi, I will for sure let you know if I need anything! Much Love! Also, I will post about the CF Peoria Walk once our team & walk totals are announced!  But Thank you to everyone who came, donated, and helped with the Big event!


  1. Hi there! Hoping you have great results with Orkambi!! My husband has CF and we also live in IL. I was curious about your switch to a new doctor and clicked on your previous post. My husband happens to see a Dr. B in Chicago... any chance you were going to Rush Hospital? If so, small world!! :) Happy to have discovered your blog!

    1. I did not go to Rush. I went to St. Alexius in Hoffman Estates. My Doc was based out of Glenview. He was a CF private practice and not affiliated with CF care centers. But that would of been awesome! I went to Doc B from like May 2011 to May 2016. It's always a tough decision, but I am confident I made the right call :-) Hope your husband is doing well!