Overdue Update

You guys, I went MIA for so long that now I don't even know how to catch everyone up. (I know I owe some people e-mails and I promise I will get to you if you emailed me during my missing person status) However, I left on such a happy high note praising Symdeko that I feel it is important to give you an update. I am not even sure how to organize this so excuse my format, this is the only way it makes sense in my head.

Summer:
Following 3 weeks of Zosyn followed by the start of Symdeko my lung function reached new highs and I felt amazing. We did a lot of traveling and Kaylee went on her first international vacation which fulfilled a dream that I thought CF may have already stolen from me because my health continued to decline for soo long. I was really hopeful that maybe Symdeko would give me a few extra weeks or even months between exacerbations and I was hoping to ride that high right into the school year.

The Downslide:
2 weeks before school started (just over 3 months post IVs) I could tell my lungs were slipping.  I was pretty disappointed because 3 months is my usual length of time between exacerbations and so despite feeling so amazing all summer I was still on my normal 3 month cycle. Always an optimist, I thought maybe I would bounce back quickly or my exacerbation would be easier to manage.  Not so. In fact, just last week after trying 2 separate rounds of oral antibiotics my lung function sunk from 40%-29%. 29% is my "oh shit" number that I was hoping to avoid with Symdeko. Am I the only delusional CF patient that keeps expecting miracles only to be disappointed for …oh 20+ years in a row?

Back on IVs:
And so I find myself back on IVs 6 months after my last round. This is actually highly unusual for me because I usually do IVs once a year with orals in between. The biggest difference I noticed is that my lungs seem to be significantly more asthmatic since starting Symdeko. I actually was thinking Orkambi was contributing to my asthma component, but it seems worse on Symdeko. Although if asthma is simply a coincidence or actually a symptom of Symdeko is anyone's guess. (I haven't been on social media outside of blogs in several years and so I have no idea what other people's experiences on Symdeko have been. Is asthma a normal side effect?). In fact, I think I had my first true asthma attack the other night which was extraordinarily frightening, but I will save that for another post.

New Drugs:
The good news is that there are now new IV antibiotics out on the market. They are actually old drugs reformulated (or something like that...it is beyond my scope of knowledge) to become new "old" drugs. I am currently 3 days into Avycaz which is a combo of Ceftazidime and Avibactam. I am hopeful that this new medication will work well because my bugs haven't come across this one yet, but only time will tell. So far so good with the only major side effect being that I got diarrhea almost instantly after starting and my urine wreaks (your welcome for that TMI).

I will be sure to report back how everything goes on this new medication. Hope everyone is staying well.