The Joys of having CF

The Joys of having CF

Wednesday, June 1, 2016

The Right Track

It's been a short minute since I've updated you all on how I'm doing and what's been going on. 

In my last post I was still in the hospital. I got discharged the next day(May 11), and I've been on home IV's ever since. Today I completed my final dose of anrtibiotics and got my PICC line taken out. That's a grand total of about 26 days on antibiotics. It's the longest I've been on IV's for quite a while and I think it was the best plan. 

The infectious disease doctor and my pulmonary doctors created the most affective plan and it worked great. For not being a CF center they do an amazing job. I still follow up at my CF center but all my other care is done at this clinic. The quality and level of care is amazing. The way they listen to me, and take into account how I feel on things means everything. The way they carefuly put plans in place, but then run them by me first, that shows me they truly care. 

During my appointment with my infectious disease Doctor today he re-informed me of some cultures they took and what all of them grew. First, I have stenotrophomonous(sp?) as usual, and I had staph. For now pseudamonous(sp?) is not growing. Next he told me that when I came in my white cell count was on the high side(meaning sign of possible infections or virus), which I new. Today it's back to normal. Lastly he said another blood culture they took(I don't remember the exact name) but it's something that measures the inflammation in your body(meaning signs of infection or virus as well). When I came in I was above 4...and he said average was 0-1 or something close. Today I'm 0.1. That's a sure sign there was not good things going on. 

As of this moment I feel good. My cough is now back to my normal. I'm no longer coughing up blood and only occasionally coughing things up. 
I had a follow up with my ENT and my polyp has shrunk way down, which is amazing. 
I feel like things are going in the right direction. 

During this month of IV's I made it a point of trying to make my life more simple. Cutting out certain things that I maybe didn't realize stress me out, or just switching things up. The less hectic the better, and also putting priorities first. 
I feel I'm on the right track with that as well. 

We also celebrated my grandpas 93rd birthday. I talk about him all the time. He's my true hero, and I'm so proud to call him my grandpa, and I'm so thankful I was able to spend his birthday with him. 
*his birthday lunch*

Lastly, I had a first last week. In 21 years of having CF I've never flown with IV's. For Mother's Day my present to my mom was a trip to Florida to visit her parents. This was planned in January. Tickets were bought. When I went in the hospital they assured me I wouldn't miss it. Well it was last week, and I made sure to call the airline, get the appropriate Doctor notes, and I can happily say I had no TSA issues. They looked at me a little weird, but there was no questions. I had a whole small carry on suitcase just full of IV's. 

It was a great trip, spending some time with my grandparents. 

And as of today, I'm officially IV free. 

Here's to another year of no IV's. 

Until next time. 

~God Bless