I had my first post Kalydeco clinic visit last Thursday. I’ve been on it for 3 months now. I was so anxious about the appointment, about doing my PFT’s. I wanted to see higher number so badly, just for further confirmation that it is working. And I’m happy to report I had a great visit!
Dr. D asked me how I was doing and if I noticed any changes. All my changes have been subtle, I never got that “wow” that I’ve heard others describe after they started K. My cough has decreased dramatically however. I cough during my morning treatment the most, then depending on the day I could go without coughing at all or maybe a slight cough during parts of the day. But overall I’m not very productive. I had a cold a while ago which stayed just that, never developed into a chest infection.
Dr. D assured me that these are along the lines of what she has seen with the off-label patients. She expects increased time between exacerbations & less mucus production. Hearing that this is what other off-label patients have experienced reassured me that this isn’t in my head and that K is working how it should be on me.
Then off to the PFT’s…
FEV1% = 74%
Great air intake, no crackling, no rails
That’s 2% higher then 4 months ago in May at my pre Kalydeco visit. Which was also 4 weeks post my IV tune up. Before that tune up my FEV1% was 70%. I haven’t seen a number higher then 72% since right before I got pregnant with my daughter 2 years ago. So I’m now 5 months post IV’s, 3 months post the start of Kalydeco and my lung function has increased slightly. I am so happy!
All of my PFT results since the end of 2006 were sent to her and she wanted to discuss the trend with me. My previous doctor always just told me my baseline was 72% which was my average and honestly I never paid much attention to it. It hasn’t been until recently that I’ve really started taking an active role in my care. So it was quite interesting to see everything. In 2007 (before I was pregnant with the twins) I had FEV1 of 72%, 76%, 72%, 76%. Then the two years from 2008-2009 I didn’t blow above a 70%, mid 2009 was when I got really sick also, for a year I didn’t get above 60% actually. In early 2010 I started running and things shot up 70%-72% with the exception of two highs of 103% and 80% which was when I was training for the NYC Marathon. I remained consistent at 70% since the birth of my daughter. I had a tune up this past April 2013 and blew a 72% in May at my post IV / pre K appointment. Now I blew a 74%.
So it really showed me just how much exercise played in not only getting my lung function back up, but also in keeping it there. Although I can’t keep up with marathon type training, running and swimming 15 + miles a week is really important to my health. And the Kalydeco is working in its small ways for me, which is all I could have hoped for. To be the same lung function that I was 7 years ago after taking a dip for a few years is amazing to me.
In other news, I’m starting the TOBI Podhaler next month which will save SO much time! Overall great appointment.