Here’s my first update since/about Orkambi, the new medication designed to improve the quality of life for a large percentage of Cystic Fibrosis patients.
My CF clinic sent the prescription to my Health Insurance provider, but they have rejected the pills based on need for proof that I…
A. Have CF,
B. Have the correct CF mutations,
C. The doctor prescribing the Orkambi is a CF specialist.
In the past two and a half weeks, there have been at least 10 phone calls and emails trying to move this process along. While I was on the fence in the beginning, unsure that I would take Orkambi, after getting sick again, and my doctor threatening to put me in the hospital a month ago, I started praying that I would be able to do everything possible to get approved.
I got through that exacerbation with 2 oral antibiotics. I was happy. I also saw my CF clinic and had my lung function tested – it was high enough that when I (presumably) started Orkambi ASAP, any side effects would be obvious, because I wasn’t sick at the time.
Now, as I watch my email inbox, make phone calls, and stalk my postman, I feel more and more that I want…I need…Orkambi.
But Wait, There’s More
I started to get sick again.
- Productive nighttime cough
- Difficulty keeping up my oxygen saturation (I have no oxygen at home.) When asleep and after physically exertion, my oxygen saturation levels have dropped.
- Walking up the stairs takes twice as long.
Now… It’s not emergent – I am not in respiratory distress, but they if they stay below 90 for any period of time, I will neeed oxygen.
If my symptoms collectively worsen, I will have to call my clinic and most likely will be placed in the hospital.
My fevers are relatively low, but still bothersome – and make me feel achy and tired!
Please pray, cross your fingers, or send your positive thoughts out into the universe that I have the courage and patience to do what I have to do should I go in the hospital, that my doctors have the wisdom make the best decisions possible, and that while I continue to fight for Orkambi, I will continue to hear all about all of the other CF patients who are taking the closest thing to gold we’ve ever had.
Until then….tell me about your Orkambi adventures, good and bad!!