Friday, February 28, 2014

Clinic & 15 Week Update

Today I had my first CF clinic appointment since becoming pregnant. And to be completely honest, I've been feeling like total crap the past few weeks. Thanks to my stupid insurance change, I was supposed to start Tobi a week or two ago, but it's still being approved, ugh! So since I haven't started the antibiotics yet, I knew my PFTs were going to be pretty low today.

It started a few weeks ago, when I felt like my lungs became flooded with mucus over night. It came on so suddenly and not like a typical CF chest infection, that I was thrown off. I had an increased cough and increased mucus production, but it wasn't really a different color, just so much more. Of course I tried to fight it myself, but it got to the point where it was interrupting my sleep and making me completely exhausted, so I called in the "big guns" aka: Tobi. Now, I haven't been on a full month of Tobi since August, so I really thought it would help clean me out... but insurance decided to get in the way of that...thanks insurance! Then on top of it, I started developing some crazy sinus infection which has clogged my sinuses so bad that it started coming out of my eyes yesterday morning, I know, lovely! So I've been doing two sinus rinses a day for about a week which temporarily help, but it wasn't enough. All I have to say is... thank goodness I had my appointment today!

Anyway, so my PFTs were down, as I expected. My FEV1 was 69% - I've never seen numbers that low, but I can't say that I was surprised. My doctor didn't seem as concerned as I thought she would and she said that my PFT graph looks symmetrical and looks much better than how I'm feeling, so that relieved me a bit. She also wasn't too concerned because thankfully, I have plenty of options right now. I'm starting my Kalydeco back up tonight after being off of it for nine weeks - I'm glad that I was able to stay off of it during the critical development period of my pregnancy. I'm also going to start Tobi whenever my insurance decides to cooperate. As for my sinuses, I'm going to continue my sinus rinses followed up with some Nasonex. I'm hoping that the combination of these things will get my lungs back to normal soon before Baby starts squishing them.

As far as my pregnancy goes, everything is going very well, today is the last day of my fifteenth week. As I said before, I'm proud of myself for not exposing Baby to Kalydeco, or any antibiotics, during its first trimester. This week I've been pretty exhausted...I feel like I'm feeling more like I should have first trimester now in my second... but I think I'm finally on the right path to feeling better. This week, the baby was the size of a naval orange and could sense light shined into the belly even though its eyes are still fused shut, and can now move all of its limbs and joints now. I can't wait to feel Baby move soon!

1 comment:

  1. That's awesome that you were antibiotics free for the first trimester! That's awesome, hopefully your insurance gets the swift kick in the booty that they deserve and you can get your Tobi soon! Sorry your FEV went down, you know its not permanent and will bounce back up :-) And hopefully then you will start to feel better too!