Wednesday, June 28, 2017

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.

Wednesday, March 15, 2017

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

Tuesday, March 14, 2017

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!

Saturday, December 31, 2016

Looking Back

Well, it is the end of another year... 2016 has come and gone. Like so many of my friends, I have decided to take some time to reflect on the year. When the year began, I went into it with a couple main goals. I wanted to continue with my streak of compliance with my breathing treatments, and I wanted to continue working out regularly to fight cystic fibrosis.

I did both of those things. Today marks three years of sticking to my breathing treatment regimen! I have worked hard to stay healthy. I worked out no less than three days a week every week except for extenuating circumstances. While the year started off strong with my lung function staying stable and me feeling pretty good, things started to take a turn in the fall.

The start of the school year is always rough on my lungs, and this year was no different. I saw a two percent drop in lung function in August. Unfortunately, drought led to wildfires all around Knoxville and weeks of bad air quality. That led to tight lungs and lung pain that was on and off through the end of the year. On top of that, I ended up with a cold right before my clinic appointment in November. This time, my lung function had dropped to 41%... four percent less than August. Was I disappointed? Yes. Surprised? No.

With the help of oral antibiotics and steroids, I pushed through. I didn't let it get me down. I had to miss a couple of workouts due to a stomach bug, but two weeks later, I was back up to 44%. Numbers were headed in the right direction. I was proud of my hard work and used it as motivation to keep pushing and fighting.

This past week, I have been dealing with a back injury which has slowed my workouts temporarily, but my lungs are still on the mend. Then, on Wednesday, I found out that I have pink eye in both of my eyes... I had to get antibiotic eye drops, and now that is in the process of getting better as well. The second half of 2016 has thrown everything it has at me. I feel a bit beaten down and frustrated. To say I'm ready to see 2016 in my rearview mirror would be an understatement. I am excited and ready for what the new year has to offer!

Happy New Year!

Saturday, December 17, 2016

Follow Up PFT

I left my last clinic appointment feeling frustrated and unsurprised by my lower lung function. It had dropped from 45% to 41% due to bad air quality and a cold that had started to rear it's ugly head. I filled my prescription for steroids and antibiotics that day and got started as soon as I could. So, it's been two weeks, a long two weeks full of stress and stomach issues thanks to antibiotics tearing up my system. Needless to say, I am so glad to be done with them. I had my follow up PFT yesterday afternoon at UT. I went in apprehensive just hoping for some sign of improvement.

My lung function went from 41% to 44%! I am so relieved that it improved by 3% in just two weeks! It's a step in the right direction, and I'm hoping that the hard work keeps paying off. I'm not going to give up, and I'm definitely not going to let up. I've got too much to fight for. Now, I'm going to finish up these last 3 1/2 days of school before winter break and enjoy the holidays with family and friends.

Sunday, December 4, 2016

Ups, Downs, and More Downs

Life with a life threatening illness is full of ups and downs... Unfortunately, for me lately, there have been more downs than ups. Many of you have heard the recent news of the horrible Gatlinburg fire that happened Monday night, but before that fire, east Tennessee had been dealing with wildfires for a month or so. Due to extreme drought, there have been fires all around Knoxville. Because of that and the fact that we are located in a valley where the air just kind of gets stuck, we have had air quality alerts almost every day. There were days when you could actually see the smoke just hanging in the air. My lungs started becoming tighter and more restricted feeling with every air quality alert. It got to the point where I had to stop going outside with my student for recess, because after just 20 minutes outside, my lungs would be in a lot of pain.

Fast forward to the weekend after Thanksgiving, and I started getting sick on top of it all. My nose became congested, and my cough turned from a dry, nagging cough to that wet, miserable cough those of us with CF know all too well. That brings us to November 30th when I had my clinic appointment. I knew my lung function was not good due to all of the factors working against me, but it was a question of how bad had it gotten.

Needless to say, I went into the PFT with a bit of anxiety and nerves. As soon as I started, I couldn't make it through the test without starting to cough from my lungs getting irritated. The first test showed 38%, and my heart dropped. The next two read 40% and 41%, so we stuck with the 41% as the official result. Unfortunately, that is another 4% drop from my last appointment when I had had a 2% drop.

After talking to my doctor about all the factors involved in my lung function drop this time, we decided to try oral antibiotics and steroids to try to jump start my healing. I am going to be doing a follow up PFT in two weeks to see if there is any improvement. Then we will go from there.

So what do I do now??? I keep going. I keep working out. I keep doing my breathing treatments and taking all of my medications. I keep fighting. I keep knowing that my hard work is paying off even if I'm not seeing it right at the moment. That's all I can do. I refuse to go down without a fight, and I have to think that in two weeks, I will be feeling better, and my lung function will be on it's way back up.

Sunday, October 2, 2016

CFRD

As most of you know, I have been waiting to figure things out about my new possible diagnosis of Cystic Fibrosis Related Diabetes (CFRD). Well, I finally had my first appointment with the endocrinologist on Wednesday this week, and I went into it incredibly nervous and not know what to expect. The doctor and nurse practitioner were very kind and knowledgeable about CFRD. They asked me background questions and went over all of my blood work and came to the conclusion that for now, my body is still producing insulin. It just can't keep up when I drink straight sugar like in the glucose tolerance test.

They decided that I need to start monitoring my blood sugar just to keep track of what it is doing. So, for now, I just have to check it once a week unless I am sick. If I happen to get sick, I will have to check it once a day. I go back in 3 months for another check up. If nothing has changed, we will continue with the same plan, and I will get to go 6 months in between visits.

Thanks for all the good thoughts and prayers! I think this is the best news I could have hoped for, and I'm hoping that we are able to stick with this game plan for awhile.