Sunday, April 8, 2018

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.

Sunday, January 21, 2018

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!


Friday, January 5, 2018

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.

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!