Maintaining is Winning

I am a person who has a mindset of always trying to better myself... I want to improve, get better, get stronger, smarter, etc.. I think that is my biggest challenge with living with cystic fibrosis. I am constantly working my butt of to stay healthy and to try to improve my health, and yet, there are so many times when I don't feel like the numbers don't show that work. I have been compliant with treatments, working out, and I was at the beach last week, but my numbers were pretty much identical to my lung function in March. I had really hoped that they would have gone up at least a little bit. It was 43%.

I have to remind myself that with this disease, maintaining lung function is a win... it's a big victory. It's just hard to accept that sometimes, but I am working on it. That being said, I'm not giving up hope that my numbers will eventually work their way back up... that's part of what drives me to work as hard as I do.

In other news, my weight was also the same which is great! My doctor was happy with everything and pretty much told me to keep doing what I'm doing. I go back in September, so I'm going to keep pushing and see where it takes me then.

What a Day

Well.... today was crazy and difficult. I guess I'll start from the beginning. Trump was scheduled to be in Nashville today, so I had already planned to leave a little earlier than normal in case there was bad traffic once we got there. Unfortunately, my dad called this morning to let me know that there was a bad accident blocking both lanes of I40 W. So we started rushing to get out the door as quickly as we could. We jump in the car, and I turn the key to start it..... and nothing. My car wouldn't start... dead battery. So we get into Eldon's car and had to run to get gas before we could even hit the road. Not exactly the best start to the day. Luckily, the crash had been cleared before we made it that far, so we did not have any extra delays from that.

That brings us to the actual appointment. Going into it, I was feeling confident that my numbers would be higher because of how good I've been feeling lately. Clearly, my lungs have just been fooling me... My lung function today was 43%. To say I was disappointed would be an understatement. Normally, I send out my update texts to family and friends right after my PFT, but today, I just waited. I didn't want to send my bad attitude with my update.

When my doctor came in, he asked how I was feeling, and I told him I thought I was feeling better than what my numbers showed. He pulled out a paper with 3 years worth of my PFT's, and as we looked at it together, we saw that I have a definite trend. My numbers are lower in the late fall/early winter and in the early spring. They tend to be higher if it's late spring or summer. Seeing that helped me stop freaking out, and he assured me that he wasn't worried since I have been feeling so good. I then brought up the lung pain that I have been having from time to time in what seems like random times. He pretty confidently told me that it was probably just inflammation which could be treated with Ibuprofen as needed.

Was today a great appointment? No. But it could have been a whole lot worse. I've maintained my lung function through all the sickness that has been going around, and I'm feeling good. Once I reminded myself all of that, I was able to actually update people without the extra frustration. So what now? The same as always... I keep on keepin' on. There's no time to fret about it. I just have to keep doing what I'm doing.

Thanks for all the thoughts and prayers! I really appreciate it!

http://fightcf.cff.org/goto/kaylaskrusaders

Fingers Crossed

I feel like I am a broken record when it comes to this post... My 3 month clinic appointment at Vandy is tomorrow. As you may recall, last time I went, my lung function had dropped to 41%. After doing a 2 week stint of oral antibiotics, it was back on the rise. When I had that 2 week progress check, my lung function had increased, but it hadn't made it to the 45% I had in August.

Since then, I have been working very hard to improve things even more. The problem... Tennessee weather is crazy! Just last week, we were in the 70's one day with a big chance of snow two days later. These drastic temperature changes have been really messing with my lungs and sinuses. Not to mention the amount of flu, strep, and other illnesses that have been making the rounds here. We even got a few days off school because of how many teachers were out sick. Somehow, I dodged that bullet, and overall, I have been feeling pretty good. Sure, there have been quite a few days thrown in there with tight, wheezy lungs, but I have been relatively healthy. I haven't missed any treatments, and I have not missed any of my workouts.

So that brings us to tomorrow... I'm anxious and curious to see where my lung function is right now. We are in the middle of one of those drastic temperature drops, so my lungs don't feel as good as they have been in recent weeks. I feel pretty confident that it will be higher than it was in November which is always a plus.

I've also got one major concern that I have to bring up at my appointment that I don't really want to. I have been having pretty consistent lung pain, but I haven't said anything yet because I have been feeling so good overall. I don't want them to just give me an antibiotic and hope it goes away. So hopefully, I will get some answers about what is going on there.

Anyways, wish me luck tomorrow. Good thoughts, vibes, and prayers are all appreciated!