The Joys of having CF

The Joys of having CF

Friday, July 17, 2015

The Hardest Post By Far Part 1

I've been trying to write this post for almost a month. It's probably one of the hardest posts to write because there's a lot to update on, so let's get started. 
Back in September of 2014 I got a new job at a great place. I got hired as a part time assistant manager. In January of this year I got a promotion to an Associate Manager. That was a 6 month training course. It was a position to where at the end I'd be able to be a store manager. In May I learned of a store opening in Minnesota. They had a position opened for a First Assistant Manager. Not Store Manager but still a great position. I was excited, so I inquired, interviewed, and got the job. This meant moving to Minnesota, which was exciting because I've always liked Minnesota and I'd be on my own. I had to be moved by June 1st because that's when my job started. 
After lots of looking I found my dream apartment. Is that even a thing? It was beautiful. 
Even Bo liked it. Isn't it cute?! 
Well in May we moved in. It was just Bo and I. Surprisingly we really enjoyed it. Bo was a little homesick, but other than that we were "on our own". It felt good to have that "independence" I guess you could say. 
Fast forward to the middle to end of June...I started to not feel right. Those with CF will know; there's that feeling you get and you just know...this isn't going to end well. 
Me of course being new to a job didn't want to take time off so I started "self medicating", doing more treatments, doing more exercise etc, by the second to last week in June I told my mom I have to go in. I started feeling like I do each time I go into the hospital. 
When you have CF you just know when it's time for a tune up. So I told my boss what was going on. She was good about it said keep her posted. On June 30th my mom and I went to my CF clinic in MN. 
*just a little side note, I cannot take any oral antibiotics, my stomach can't handle them, it's even listed as an allergy, so I can only do IV*
At the clinic my PFT's were 85%. The lowest they've ever been my whole life. I was seeing a doctor I'd never seen before due to my doctor being booked full. The doctor came in and said ok let's do IV levaquin, the IV medicine I always take. 
I asked for an X-ray but he said I had one at my last appointment in May so I don't need one, to which I replied; "I wasn't sick then",  but he said that didn't matter...then he said we'll do an outpatient PICC line and do home IV's. To which I replied again, "can I at least stay 24 hours because 1) they always have an issue getting a PICC line in because I've had so many and there's a lot of scar tissue, and 2) usually the second day I get nauseous and light headed. He said no because insurance won't cover it. I've never had an issue with my insurance before. I said let me think about it. He left and then a nurse came and said they don't think insurance will cover it. So my mom and I called and my insurance was shocked they would say that, so we asked if they'd do a pre-authorization and they said no. 
At this point I'd had enough and i had had my breaking point...I lost it. I was overwhelmed. Never have I had these kinds of issues. I couldn't believe it. It was like because I was an adult the level of care didn't matter, and what really got me upset and to my breaking point was they wouldn't listen to ME. The patient. My mom wasn't saying these things, I was and they weren't listening. 
Now I'm usually a very strong person, I dont let much get to me,  but as I get older things change. After my mini break down, and asking the nurse to leave, and talking to my mom I asked if she'd call my other doctor in Wisconsin where I was last time. She called told them what was going on and they said they had an appointment at 8:00 a.m. the next day. I took it, I asked them for a copy of my current PFT's, we kindly left, and I'm not sure if I'll return...
The next morning my mom and I left my apartment in Minnesota with my bag packed, we dropped the dog off with my dad on our way through and headed to my appointment...and that is where everything changed...not for the better....

~God Bless 

Part 2 coming soon.


  1. you are a strong young lady Piage! God bless you as well