Skip to main content

Orkambi

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!





Comments

  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!

    ReplyDelete
    Replies
    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!

      Delete

Post a Comment

Popular posts from this blog

Clinical Trial, lung function test, and Crohn's diease

Clinical Trial, Clinic Today:   Clinical Trial 9am: Today, I went back to Dr. B's office for the clinical trial evaluation and start of trial. My last evaluation was a mess and I was not too happy with it ( Read about the first trial evaluation mess here! ) Luckily, we doubled today with my CF Clinic. It was a long day 9am-2pm in the office. BUT, good news is I'M ON THE TRIAL! It's not a new drug. I'm just doing the two meds like I always have (unless I get the placebo). I love being a part of clinical trials! The thought of helping drugs be approved that can help our health or even get approved by insurance easier! In the past I did a Clinical Trial for enzymes (that was a horrible clinical trial). I had to collect my stool in buckets and mail it to the lab...EW. But, it was to help us digest food better. AND now I'm on Zenpep, which is a fairly new enzyme and it does wonders for me! I did clinical trials also for Pulmozyme and Tobi too! So excited to get involv...

A Simple Hug

I'm a hugging type person. In fact, I have a couple friends that aren't big on hugs or any kind of public displays of affection. However, they usually bring the bubble barrier (as I call it) down to hug me good bye. I'm also super extroverted and LOVE to hang out with friends.... Therefore, not being able to see my friends (with CF) in person drive me nuts. A lot of people (in society) don't realize that people with CF cannot be around each other. This is due to the bacteria we colonize in our lungs. It doesn't affect non-CF individuals. But, as we come in close proximity with other people with CF those bugs spread and continue to damage our lungs faster. We fight off the bacteria with antibiotics, but when I was younger we didn't have many options for antibiotics (especially nebulized). This meant we could not eradicate the bacteria and were stuck with it in our lungs for the rest of our life. The more bacteria we culture, the faster our lungs are damaged, t...

How theatre helped me more than you can know!

Theatre and the balance of my life Every person with Cystic Fibrosis has to figure out to balance the medical with the social. For years I had no clue. Currently, I'm in a show Hairspray, its really fun and a show I've always wanted to do. I'm being smart, no matter the time I get home I still do my meds, I still find time to do my jogging/exercise everyday and I eat extra/do extra stomach feeding to make up for calories burned. I've been sharing about my CF with cast members, when I need to and even the director knows. I watch my energy/blood sugar. AND even while doing the show I'm at my highest weight in 10 years and on Thurs at clinic (CF appt) I will find out if my lung function has gone up (hoping for 60%). So no worries..  I learned from my mistakes though. In the past I was stupid. When I was cast in   Urinetown, at the University of Illinois, I kept pushing too much at rehearsal and then even went out with cast members some...