The Joys of having CF

The Joys of having CF

Wednesday, October 14, 2015

Where Things Are At

I know it's been a short while since I've done an update. Let's jump right in.
First last night I headed over to MN to spend the night as I do before most of my appointments. It's easier than leaving the morning of. I'm 2 hours away which isn't to bad but getting some extra sleep and a full VEST treatment in before my appointment is worth it. 
My parents were in MN yesterday so I thought it would be fun to bring my dog with last night, because the hotel accepts dogs, and then this morning my dad would take the dog home while my mom and I headed to my appointment. Well it was a great success...the dog behaved very well and it was a lot of fun. 

Onto today. I had a 6 week follow up appointment with my specialist. Last time we were concerned over my PFT's being so low and that I've been just not myself. 

Well my PFT's were a tiny bit better. I lost almost 2 pounds. 
So my doctor is concerned even more so than last time. Last week I was sick with flu like symptoms for almost 3 days but it turns out I just don't tolerate inhaled Cayston, which is kind of a bummer since it took months to finally get approval. Oh well, I still have my old reliable, Tobi. 
Anyways; so my doctor is aware of how sensitive my system is to pretty much all pill form antibiotics. They mess with the lining of my stomach which is why I have to get hospitalized most of the time to get treated. But, we both remembered one medicine I have not been on in years, Doxicyclin. So I agreed to try it. I will be so happy if we've found one pill form antibiotic that works. I took my first dose tonight so with me luck. 
This is where things start getting tricky. I have to now go back again in 6 weeks because she is prettying concerned with how my numbers are, how my lungs are, and because I'm just not feeling myself and I'm just plain exhausted all.the.time. I also need to add that for the last 8 months I've had a constant runny/stuffy nose. Today she asked me an odd question, "have you ever got your sinus's checked out?". My mom and I thought and I have never seen an ENT before. I've never had polup issues before so I've never thought to see one. Ive heard of other CFers going before. My doctor now feels bad because she's thinking that maybe all this is cause of sinus issues. So in 6 weeks I will be visiting with the top ENT at my specialty clinic, who only works with CFers and(my favorite part) she doesn't like to operate unless absolute need be. To me that is important because IF this is all sinus issues, a surgery is something I don't want in my future. 
There was also some other things discussed at the appointment in regards to being so worn down, and being exhausted, so in the next few weeks I need to make some decisions, but no need to worry because whatever is decided will only be for the better. 
So there is a little update on how things are going, more exciting news though, only 28 days till my birthday. Yes I'm excited. I count down to my birthday every year, especially because if means another year outliving statistics. 
Also, it is officially the holiday season. If anyone knows me they know I could listen and watch Christmas music and movies year round, but i am so excited for the holidays. There is something about them that makes me so happy; whether it's spending time with the ones you love, or being a little more generous, and remembering all you're thankful for. 
 I truly do wish every day could be like Christmas. If even just for the feeling. 
I will probably have a few more blog posts before the end of the year, for sure next month, and after my next doctors appointment. 
I hope everyone is getting ready for the wonderful holiday season upon us. 
~God Bless 

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