The Joys of having CF

The Joys of having CF

Wednesday, December 17, 2014

The Blackout

The blackout of a not so good appointment. 
Well to start, we left Monday night for my dr appointment Tuesday(we stay the night before) and we were getting some interesting weather. Anyways we get to the town where our hotel is and it is black, literally black. We go to the hotel and the worker meets us at the door. Apparently the whole power source for the town(a transformer) blew and the whole entire town was out of power. I must admit it was kinda cool, but they couldn't promise when the power would be back on , so we drive the rest of the way to MN and eventually found a hotel. 

Anyways this was just the start of a bigger blackout. 

Yesterday (12/16/14) I had a doctors appointment at my CF clinic. This was my first appointment at my CF clinic since my hospitalization. I was supposed to go last month but the doctor canceled my appointment. Anyways, I haven't been to happy with my doctor lately so I saw a different doctor this time. She was shocked at how not on top of things my dr was mad that know one informed me I was growing...pseudomonas(sp?) again. That explains a lot; probably why I got sick, why I haven't been feeling 100% lately and the biggest of all, my PFT's at my appointment yesterday were...85%!!!
I have never had that low of a PFT in MY.LIFE!
This time last year I was blowing 95-99%. Needless to say I'm not only mad, but also kinda upset to say the least. 
The doctor I saw today wasn't happy that even when I was telling my other doctor something was wrong they didn't do anything about it. 
So, the plan currently is ill be starting a new med, Cayston(as long as insurance approves). I have hope for this as I've heard great things about it. I also have a sample of the Tobi Podhaler to try as well. So with that we'll see how I am at my next appointment which is in 2 months, not the usual 3, and I'll also have annual studies that day. 

After taking in all this information and then seeing my PFT's it puts you in a "blackout". Things blur together, you try to forget some of it, you try to stay positive and reassuring yourself it WILL get better, but right now, in reality, it hits leaves you kind of feeling defeated. BUT, even though I'm currently in "blackout stage", Once I officially let everything sink in, I will then be in the "fix it" mode, meaning I will start my own research and make a plan of how I can increase my lung function. I WILL get my PFT's up, I WILL become 100% again. When there is a will, there is a way, and I will figure out how. 

So my first plan of attack, I will start researching different doctors, yes I do like this new doctor I saw, but I'm still not 100% comfortable with how things have gone. Getting second opinions are not a bad thing. There informative, and you have to trust your instincts. It is YOUR body, trust what it tells you, and that's exactly what I'm going to do. I WILL beat this thing, and before long "blackout" mode will be gone and I will enter "fix it" mode. 

I know everything will land up alright as long as I leave everything in Gods hands and keep believing in my faith. 

I hope everyone has a great Holiday Season; 
~God Bless 

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