This month has gotten away from me! I am in shock Christmas has come and gone!! This Christmas Eve and Christmas has been one of my very favorite of all time. Having a 5 year old sure makes the holiday season magical! Unfortunately, outside of the holidays things have not been going as magically as I would like.
The past few months I was struggling with colds and allergies (who gets allergies this time of year, seriously?) and despite two rounds of antibiotics I had a really really horrible clinic appointment. Like, rock bottom low. I was heartbroken and utterly shocked. I didn't feel good, but I didn't feel nearly as bad as I did a few years ago with those same numbers. And to make matters worse my last clinic appointment was one of my highest in years...38%. To go from my very best numbers to my very worse in 3 months is heartbreaking. And all that changed was that I got two colds! I wasn't skipping treatments, I wasn't missing medicine, I hadn't given up exercise. So like all things related to my CF it was baffling.
At clinic they took my cultures, ordered a CT and decided to investigate what the heck was going on. What was interesting was my weight was stable, my O2 was fine and other than my horrible pfts I seemed okay. I checked online every single day to check my cultures hoping we would have an answer to my horrible numbers and also hoping the cause wasn't a horrible bug. When my results were posted it stated I had normal flora!!! Wait, what?! That thick greenish yellow sample was normal? I don't think so, but apparently they didn't grow anything interesting and it left us with little info on the next step.
Luckily, my CT was a touch more informative than the sputum sample. Although, again, I was a bit perplexed. The cause of my horrible numbers was plugging! Again?! This happened two years ago, but everything seemed to clear up with Orkambi (among other things). My doctor thinks my asthma is playing a huge part (showed up on my CT) so I started Prednisone in hopes of opening the airways and getting rid of some of the plugs. And to make matters a little more complex just as I am finishing up with prednisone I caught a virus and have been running fevers the past 12 hours and am worried whatever progress I made while using prednisone may be lost due to this nasty virus.
This was not exactly how I pictured ending 2017, but with CF things often do not go according to plan!
Oh no! I'm so sorry to hear you've been feeling so crumby! It must have been hard seeing your numbers drop so much. I hope you're able to kick this virus without it wreaking havoc on your lungs!
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