Same Numbers... Different Appointment

So I'm behind on writing this post. I had my CF clinic appointment on Wednesday at Vanderbilt, and as is pretty usual for me, I have been feeling crummy with extra congestion and lots of coughing. Just like in January, my lung function was back down to 32%. The difference between the two appointments was that I was mentally prepared for this one. I knew my lung function was low, and I already had a game plan in mind to discuss with my doctor.

First things first, he asked me about antibiotics. After a brief discussion, I let him know that I would rather hold off on antibiotics if at all possible. I hate going on antibiotics because they always tear up my stomach and bring up more issues on top of what they are trying to fix. My doctor agreed to let me wait a little longer before going that route since everything else seemed to be going alright. My weight has been steady, my lungs sounded good, I've been working every day, working out 4 days a week, and playing kickball 2 nights a week.

I also brought up the fact that for a couple days before my appointment, I had started squeezing in a third breathing treatment during my plan time at work. I asked if we could tweak my prescription for hypertonic saline so that I could continue with the extra treatments and not run out of medicine too early. He seemed to be impressed with my plan and said that he would fix my prescription.

Finally, we discussed Symdeko. We talked about the fact that I haven't seen any real improvements from Orkambi and about what Symdeko has to offer for those that fit this category. We both decided that it would be a good opportunity for me to make the switch. The only obstacle would be getting my insurance to approve it since a lot of companies have been denying it for patients. The next morning, I got a call from the CF pharmacist letting me know that my insurance had already approved Symdeko for me! Luckily, they had a box in stock and would send it right away. I took my first dose Saturday morning. All good vibes, thoughts, prayers that it will be more effective for me than Orkambi are greatly appreciated. I will keep everybody posted on how things go.

Being Sick is a Bummer

I know you have all seen posts (many shared by me) about why it is so important to stay home if you are sick, but I wanted to share my personal reasons for saying this. The last week of school, I caught a head cold... It was just a stuffy nose with lots of sneezing. No big deal right? Wrong. About a week went by with not much change until all of the sudden, I noticed my lungs getting tighter and my cough becoming wetter. I called my doctor to let them know that I thought this head cold had traveled and settled into my lungs. They called in an antibiotic that is known to cause muscle and tendon tears. That meant that not only was I not feeling well, I would have to really lay off my workouts on top of it.

After about a week, I was starting to feel better, and I was pumped! I thought I had kicked this little infection, and things were looking up. Soon, my lungs started to feel more junky and congested again, and I was feeling pretty miserable. Fast forward to January 3rd when I went to my CF clinic appointment, and my lung function had dropped significantly. Bring on 2 more weeks of antibiotics. That next week, I went to work one day, but I left feeling worse and completely drained. I made the choice to take the next 3 days off to rest and hide from all the germs running rampant in schools right now.

The extra rest helped a lot, and I started to feel more like myself. The next week, we ended up having 3 snow days, and I only had to teach 1 day. So again, there was a lot of resting and taking things easy. I have since finished up my antibiotics and had a follow up PFT. My lung function had gone up to 38% which was much better than a couple weeks before.

The problem is that I am still not back to 100% myself. I'm still working to dig myself out of this hole all because I caught a simple cold over a month ago. What seems like nothing to the average person, can be life threatening and serious to those of us who have other health issues to deal with. So I beg of you... if you are sick, sniffling, sneezing, coughing, whatever, please stay home and/or make every effort to stop the spread of your germs. I am terrified of catching the flu, and I am doing everything I can on my side of things to keep that from happening. Please do your part to help also!

New Year... Same Story

Wednesday was my clinic appointment, and like so many times before, I have not been feeling well. What started as a head cold, traveled into my lungs, and I've been dealing with it all of winter break. I had asked for antibiotics and had started to feel slightly better but then went back the other direction. Fast forward to Wednesday... I woke up feeling off... my stomach was kind of queasy, but I assumed it was just nerves. We drove the 2 1/2 hours all the while, I was thinking about what the doctors were going to say about my lung function that I was assuming would be low. Turns out my lung function had taken a bigger dive that even I expected. It dropped from 41% three months ago to 33%.

After a long discussion about my antibiotic choices (risk of muscle/tendon injuries and tears or antibiotic that I had a weird reaction to last time I was on it), we came up with a game plan. I went for the weird reaction so that I can still continue to workout without the worry of major injuries. The doctor also determined that I have thrush after looking at my throat which was probably caused by my first dose of antibiotics. So... just add another little medication to my daily regimen. The good news is that he wasn't overly concerned because my weight is steady, and everything else has been going well.

Lucky me, I was also due for all my labs. So in comes the nurse who looks at my veins and tells me how wonderful they are. Well... they must not be too great because one stick complete with digging around... no blood. Take two in the other arm, still no luck. Bring in another nurse, and take three, nothing. Finally on the fourth try, she got it. They both apologized profusely, but I assured them that it was just how the day was going.

On the way home, I realized that my stomach was still not feeling right. We made it, and shortly after, it hit me... the stomach bug... what a nice cherry on top to that miserable day. Two days later, I have finally started taking my antibiotics and am hoping that things start looking up. I am supposed to go for a follow up PFT after the antibiotics are done to see if there has been any improvement.