CF Fights Back

A lot has happened since my last post, so let me fill you in a little bit on what's been going on!
Last post, I had mentioned about my previous clinic visit, and my FEV1 being up to 61%, a 15% increase from the time before. I had also mentioned that my FEV1 had since then climbed up to over 70%! It did continue to rise a little bit more, but I had started to feel like things, once again, were heading for the worst. Now, I don't know if I'm just the type of person to panic at any sign of congestion (especially now that I have put in so much hard work), but that's exactly what had happened. I started to feel tired, and congested, and I wasn't sleeping through the night, I would wake up coughing. All the same symptoms I have always had when my numbers got low. BUT, even though I had all the symptoms of a bad infection brewing (and even the results of a sputum sample saying they were) my FEV1 had not budged. I was still holding strong at 70%. My old CF mind would be saying "this is what this disease does, it's just 'running its course'." My NEW CF mind, however, called the doc right away, arranged to get a PICC line inserted, and knew I had to fight harder to get past this.


So, of course I show up at clinic, blew a 2.71L (71%) (again, 10% higher than my previous visit), and the doc says "I don't think we need to put that PICC in". I was almost in TEARS. I was THRILLED that my number had went up (even though I knew it had before I got there), but I wasn't FEELING like a 70%. So I begged and begged, and finally they decided they would treat me for my "symptoms", even though my lung function test was telling them otherwise.


Sure enough, I went back a week later, and I had already improved 3%, Up to 2.82L (74%). And for any other CF'er that's reading this, or ANYONE who has had to have a round of high dose IV antibiotics, you know the first 4-5 days make you feel much worse than you felt to begin with! So I was surprised to have any improvement at all! So we continued on the IV for one more week, and I continued my running during this time, and show up the following week feeling better than I ever remember feeling in my life! At this point, my nerves are shot (which was funny, because I'm not usually nervous about having to do PFT's), but I had a goal in my mind. A number I wanted to reach, and I knew I could reach it on my own meter, but could I pull it off at clinic. I remember blowing, looking up at the computer, and there was a nice big "3" in front of my number, and the RT and I had a little celebration! I am now up to 3.08L (81%)!! I never, in a million years, thought I would ever see a 3L number again!


So, after seeing the doctor, we decided that we didn't need to continue on with the IV antibiotics. In fact, we decided (for the first time since March), we didn't need to continue on with ANY antibiotics. I'm feeling a little nervous about it, but I'm keeping up with my supplements and my exercise, and so far things have been good. Hopefully I will be able to maintain my success (or improve ;) ) for my next visit in January.


When CF fights back, fight harder!
NEWWW goal, 90%! Is it possible? :)