Monday, April 29, 2013

Clinic Update 4/29

There is just something about the word clinic that makes me shudder.Maybe that you never know if you'll hear good news or bad news. Maybe it's the fact that you never know if you'll have to stay. But there is just something about that day, even if it's just an hour appointment, that makes an hour appointment a whole day affair.

Last week I had PFTS done(for some reason, I don't do them the same day like everyone else). They came out to be about 29%. Not shocking, but not exactly something that I'm jumping for joy about. I really was hoping for a better number, especially since I really have been doing my best to try and increase my lung function.

The doctor didn't have too much to say this visit-which is honestly,releiving considering I have had bad news everytime I go to the doctor's lately.So I'll be able to sum it up into a few bullet points.
  • I'll be going to an ENT for a full evaluation. She believes that a lot of my cough is coming from sinus',hence why there's blood.
  • We're running a full lab workup to find this auto-immune disorder that for some reason, she believes that I have. Endo-something.
  • We'll be adding a CPAP machine into my daily life-really, anytime that I can.Crazy part-my insurance wanted $633 dollars for one!!!!!!!!!!!! Crazy.
  • She was able to tell me that I have "severely thickened airways" but didn't tell me much on what to do about it-thanks doc.
  • Still not cleared to exercise-I can walk and bike but that's about it.
So, at this point I feel stuck. We haven't really made any changes to make me feel better, so I guess I'll just keep declining. It's a little frustrating but that's all I can do I guess.

Thursday, April 25, 2013

Finding time in the day...

When did life become so hectic? Is it when we added on television and social media that takes up hours of our valuable time? Is it when shopping became a hobby instead of a necessity? I am not sure. I find myself always wondering, "where has the time gone?". With CF, I find time is an essence. Not only in a long-term sense,but a short term sense as well.

Now that I'll officially be done school, it's time to focus on my time and time management. All I will have is work and doctor's appointments. I can finally develop a schedule to do my treatments daily, and to get everything else done as well. I am beyond excited to be able to schedule my life and know I don't have to throw in time for class and schoolwork in there as well.

How do you all manage time?

Friday, April 12, 2013

The passing days...

What is new to share? Nothing much at this time...It has come to the end of my 3 month appointment wait...with my appointment being on April 29. This is the month that I spend preparing, hoping, praying for some sort of good news. A miraculous pft or somehow a fairly decent xray. An appointment where my doctor says "great progress" and pushes me out the door. But in reality, I know these things are far from happening.I know that we are so close to transplant and that I will now start the pre-screening process. I know that I will leave that office with tears, knowing that the battle isn't over. If anything, this is what CF is. CF is the uncertainty of not knowing. That any moment you're life can change forever. You can develop a deadly infection and be done within a week. The uncertainties of not knowing what you're walking into when you enter that appointment-hell,normally you don't even know if you'll be walking out. I suppose there is never a dual moment in this life. That's all for now<3