The Joys of having CF

The Joys of having CF

Thursday, March 10, 2016

Next Phase

Monday and Tuesday I had my appointments in clinic. It started with the glucose test(which only took three tries for an IV),
then I had my dexa scan(it tests bone density), from there I had a chest X-ray, and I ended with my CT scan of my sinuses. 
Then I had PFT's, which were 85%. Still very low for me, but not lower. They are stable. I got all my results and Everything looked good. I am still borderline but I'm not diabetic. All my levels look good. My xray looks pretty much the same as it did last year. My dexa scan showed my bones are above average. Then I got the results of my sinus CT. As we've all assumed my sinus's are pretty full. Which means I need sinus surgery. Not a big shock. I had a feeling it was going to show that. 
The only small detail is I do not like the ENT my doctor works with. In fact she told me she knows of know one else. So after my appointment we called my nurse practitioner, who I absolutely love(the one I go to when I need a hospitalization, or when I need a second opinion) and she does work with a pulmonologist. We told her what was going on and she recommended two ENT's that she works close  with. Today I heard back and next month I have a consult with one of them. All they need is my current CT scan and notes. 
I'm happy that all my teams of doctors can work together, and I'm very thankful I have all of them to help me with my health. 
I'll be honest, I'm not looking that forward to the surgery, but I know it is the best thing for my health. This could be the whole reason my lung function is down and why Im not feeling 100%. Im looking forward to the consult only because the sooner the surgery, hopefully, the sooner I start feeling better. The surgery will probably be in summer due to the fact of time/availability. 
I will definitely be bringing you all on this next journey in my health. Thanks for all the support, love, messages, and prayers. It means a lot. 
Until next time, 
~God Bless

Sunday, March 6, 2016

March 7th

It's crazy how sometimes little details in life repeat themselves. Every year I celebrate March 7th. It's the day that mine and my family's life changed forever. 
On March 7th I was diagnosed with Cystic Fibrosis. Though I was obviously born with CF, I consider March 7th my "CF Anniversary". 
On March 6th 1995, my parents probably didn't know that the next day everything would change. 
I say it's interesting that life repeats itself because tonight I sit here in a hotel room, and tomorrow I'm going to spend the day at the doctor. I don't ever remember having an appointment on my actual anniversary. 
Tomorrow and Tuesday I have doctors appointments. Tomorrow I have my glucose test, X-ray, dexa scan, and sinus CT scan. Then Tuesday I have PFT's and see my doctor. I'm trying something different. Splitting everything into two days of appointments so I don't get to wore out like I usually do. 
Then tomorrow after my appointments I am going to enjoy a fun day with my mom, celebrating my anniversary. 
21 years ago none of us knew what laid ahead of us. It's been quite a journey so far, and I can't wait to see where else life takes me. I'm going to do my best to live my life to the fullest. I can't wait to celebrate 21 more CF anniversaries, and hopefully one day not long from now I'll also be celebrating the anniversary of when CF became...Cure Found.