Tuesday, July 24, 2012

Purgatory. It could be worse.

Growing up there was this awesome park my mother used to take me to occasionally. It was great on a summers  day because it was usually cooler than sitting around. The park contains a deep chasm of granite rock. There are about two miles of hiking trails throughout the chasm. Some parts of the chasm even have silly names: Fat Man's Misery (a narrowing path between two rocks, optional to go through of course) His Majesty's Cave, and Lovers' Leap - just to name a few that I can remember.  The chasm had donned itself the name: Purgatory Chasm.

I find it ironic that when I hear the word purgatory my mind automatically draws up the fun adventures my family had at Purgatory Chasm.  I think the name suited the place very well, not quite in hell, yet not quite ready for heaven. Hovering in an in-between state.

Currently my life resides in sort of an insurance purgatory if you will.  Not quite denied, yet not quite approved. Recently after fighting for a few months to get Kalydeco approved,  due to unfortunate events, I had to return to my mothers' insurance plan.  After only 1 month on Kalydeco, I was now faced with fighting a whole new battle, and yet the same battle I just fought.

While there is good news, (it's already on the formulary, the good news is balanced out with the bad news: they need proof from a DNA approved lab that I do infact, have the G551D mutation. Initially, I didn't think was a big deal. However, it turned into a big deal when they decided that they needed the official paperwork from the Lab. I was tested almost 20 years ago, when papers were taped into a manilla folder, and we prayed to the medical gods that nothing would be lost, or blow off with the wind.

Turns out the gods mock me. The one paper I needed, is the one that is lost. Gone. Poof. The only paper I do have that states my mutations, listed one of them incorrectly. Can you guess which one? I'll give you a hint, it wasn't deltaF508. Yup, they made an error 19 years ago when they wrote "G5112".

So as I'm mulling about in my own personal insurance purgatory, all I can do is wait. I've sent off my bloodwork for a test we already know the answer to, and now I can wait for 8-10 weeks for results... after I pay them 1,000 dollars. Psh. Is it really any surprise by now that insurance won't consider it an 'in-network' cost? Nope, no surprise here. But that's not all, let's continue on this purgatory tour, shall we?

After waiting a few months for results to come (all the while NOT on kalydeco) we get to send off the paperwork where we can "start the appeal process" as my nurse informed me. Wait, wait, so I don't get to go right on it after we hand in the newly printed, hot off the press, cost me one thousand dollars - results?? Well, of course not. Silly me, really, I should have known better.

All in all, I'm oddly okay with all of this. Granted, I'm NOT okay with the fact that I have to go through all these hoops after already performing like a circus dog for my other insurance company. But rather, I have too much already to stress about to add this to the list. There's nothing I can do except wait.

Fat Man's Misery
I think the universe might be trying to tell me something: perhaps time can bring good things? Those who wait, will be rewarded? Well, on the bright side? At least I'm not stuck waiting in here:


3 comments:

cindy baldwin said...

good grief!!!!!! Will you be without Kalydeco in that time?

Beth said...

Yes Cindy! Isn't that crazy? =( All my plans are just falling apart!!

John said...

WOW, its always something isn't it!!! Hopefully this process will be some what smooth if possible. I guess you should look at the glass half full right. There is a medicine that is out there for you that you know works :) I'm hoping this gets resolved quickly. Hang in there Beth!!!