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!

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.

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.

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.

Test Results

I apologize to those of you who have been waiting on news from my clinic appointment last week. Life got in the way of me writing this post... Teaching has been crazy busy, and I have had things going on pretty much every night.

On the day of my appointment, I woke up to a deep, wet cough, so I went into it knowing that my lung function would not be what I had been hoping for. I was right... my lung function dropped from 47% to 45%. The doctor was not at all concerned though since my weight was still the same, and he said that he saw that drop as very minimal. We also talked about started antibiotics then, but he didn't feel like it was necessary yet because he didn't want to over react if it was just a little thing. Unfortunately, I started feeling pretty terrible this week, so they called in some antibiotics for me. I'm hoping that it will get rid of the junk I've got going on in my lungs right now.

The other big question for this clinic appointment was about CF related diabetes. I had to do the fasted two hour glucose tolerance test for the second time this year due to my May test resulting in the number being too high. Unfortunately, I had almost the exact same numbers this time, so they have sent my information to an endocrinologist who is supposed to call me to set up an appointment. I really don't know much about CFRD other than it is not Type 1 or Type 2 diabetes. It is more closely related to type 1 though. My doctor also mentioned that many times, to begin with, you just have to monitor blood sugar for a while assuming that it's not too far progressed. Right now, it's just a waiting game until I see the endocrinologist and learn more.

So all in all, my clinic appointment was not at all what I was hoping for. It is what it is though... I will just take my new obstacles and keep going. My next clinic appointment is set for November 30, so as usual, I have my sights set high for my lung function. I'm going to continue doing everything I can to stay healthy once I get rid of this little cold thing I'm battling right now.

Nerves...

Nerves... That would be the best one word description of what is going on with me this week. I go back to CF clinic on Wednesday, and I am more nervous than usual. Why? Not only will I be doing my quarterly pulmonary function tests, but I will be doing the second two hour fasting glucose tolerance test of this year. This test is normally a yearly thing that goes along with clinic, but in May, my numbers were too high which made my doctors believe that I now have cystic fibrosis related diabetes (CFRD). Needless to say, I do not want bad news, but I will figure out how to handle it if that is what happens.

Nerves are really something that comes along with the territory with cystic fibrosis though. There have been countless times that I have been worried or nervous about one thing or another with my health whether it be lung function numbers, lung pain, getting sick, or whatever else may cross my path. It can be difficult to deal with these things, and I think that is one of the big reasons that I try not to think to much about the negative possibilities with this disease. I choose to live for today and try to be the best version of me possible. I use that in every aspect of my life as well, and that is why I tend to go with the flow in everything. I don't freak out and stress when something changes at work. I try not to let little things get me flustered because, in the end, it's just not worth it. There are so many other things to deal with without sweating the small stuff.

Anyways, even though I'm not stressing about small stuff, I am definitely nervous about Wednesday. All I can do is hope for the best though. I have done everything in my power to stay healthy, and right now, there is nothing else to do. All the same, positive thoughts are welcome. :)

How Exercise Has Changed My CF Life

Research shows that regular physical activity or exercise provides multiple benefits for people with cystic fibrosis. These benefits go beyond better lung function — keeping fit also helps you strengthen your bones, manage diabetes and heart disease and improve your mood.
~cff.org

Growing up with cystic fibrosis, I always made sure to stay active. It was something that my parents encouraged me to do, and even if I didn't know the science behind it, I knew that it was helping me stay healthy. I wasn't diagnosed until I was 6 years old because my lungs were so healthy due to me running and bouncing around all the time. I always fully participated in gym class, we played kickball in the back yard, I cheered in middle and high schools, and I played church league basketball. I was "healthy" and happy during that time.

The problem came during college when I chose not to focus on my health. I chose to ignore the fact that I even have CF. I stopped doing treatments, and I stopped being as active. Sure I did some things, but my activity level dropped significantly. My lung function plummeted, but you all already know that because I have written about that before. From that point on, it was a bit of a ripple effect... Activity goes down, lung function goes down, energy goes down, so willingness to be active goes down. It's a vicious cycle.

A few years ago, I decided it was time to get active again. I bought a gym membership and began working out with my sister. We were inconsistent, but at least we were doing something. I still had a difficult time motivating myself to go to the gym and to get much accomplished while there. During this time, I kept seeing posts on Facebook from a guy that I went to high school with. He had his own gym and was always posting about the programs he offered. I finally bit the bullet and emailed him asking what he had to offer. That was June 23, 2014. I was nervous because this was something unlike anything I had ever done before.

He began working with me and writing programs that would benefit my lungs. I began lifting weights and building up not only my lungs but also my muscles. I grew stronger, and I started noticing differences in how I was feeling. I started sleeping better, my lungs were feeling more open, I was getting sick less often, and my weight (which can be very difficult for those of us with CF to keep up) became more stable.

Has my lung function sky rocketed? No... But it has been on the rise this past year. I went this whole past year without having any major sicknesses! That's huge, and I credit my working out with that as much as I do my breathing treatments. I feel strong. I feel confident. I feel great! My advice to any people with cystic fibrosis is to get active. It doesn't have to be running; it can be anything. If you are a CF parent, have your child play outside riding bikes, running around, playing tag. It's so important for our health.

Working out has become part of my health plan. I'm at the gym 4-5 days a week following the plan my trainer has laid out for me. There are days when I'm not feeling it, and it is challenging and exhausting. But it is so worth it!

If you are looking for a great gym in the Knoxville, TN area, Unlimited Training Systems is the place to go! The owner, Blake, has changed my life, and I am so grateful! 

New Game Plan?

I went into today's clinic appointment full of anxiety and apprehension. I felt this way for multiple reasons. The biggest was the fact that I have had multiple trips to Vandy that didn't show desirable results. My lung function has been on the decline despite all of my efforts with breathing treatments and trips to the gym. Honestly, I was beginning to believe that I had reached the limit of my lungs and that I would only lose lung function in the future. It has truly been just as much an emotional struggle as it was a physical struggle to keep all of the hard work up. I just kept telling myself that even if I wasn't seeing what I was hoping for, I was feeling pretty good.

On top of that, I have been dealing with some pretty random and very painful joint pains. They hit a joint for a day or two making my trainer have to rethink my workouts to avoid the effected area. It has been frustrating to say the least. It has affected my ability to push myself in my workouts which could definitely have a negative effect on my lung function.

The cherry on top of my worries was the weather. Temperatures in Tennessee have been on quite a roller coaster. We saw highs in the 50's and 60's last week and then had a 30 degree drop this week. When there is a drop like that, my lungs seem to close up. They become tight, and it makes it much more difficult to breathe.

So that brings us to today. I went in expecting my lung function to be the same or lower than last time, but I was in for a surprise. I did my PFT three times like usual. My third time was my highest, and while it definitely was not the highest I have ever had, it was higher than October's. I went from 42% on October 21 to 44% today! I am ecstatic! To add to that, I also gained a few pounds which always puts a smile on my doctors' faces. The only negative from the visit is that I still don't have any answers about the joint pain.

What's the game plan now? In the words of Dory, "Just keep swimming! Just keep swimming!" I'm going to keep pushing through and taking things one day at a time. I'm on day 771 of being compliant with my treatments, and I'm working out with my trainer four to five times a week. Fingers crossed that I keep seeing an upward trend, but if not, at least I'm feeling good and enjoying my life!

2016 Goals

Normally, I write a New Year's post January 1st. It's a post that focuses on how the previous year went and the goals for the new year. The problem is that I've been struggling to figure out my feeling about 2015 and where I want to go from here.

2015 was difficult for me. The year started off strong, and I finally started to see my lung function improve a little. I continued with my treatment compliance and my workouts. About halfway through the year, things started to change. I had my first lung bleed, had my wisdom teeth taken out, and my lungs just had troubles dealing. My lung function dropped, and has been lower than I would like ever since. I have worked incredibly hard, and my lungs have fallen into a pattern. They feel great for a couple weeks, and then they will hurt and feel terrible for a week or so. I have felt like I've been getting nowhere with them and with my health. To top it all off, I started 2016 by getting a respiratory virus... yay me...

The second half of the year wasn't all bad though. I never stopped keeping up with my treatments, and December 31st marked two years of being compliant! I didn't give up on working out either. We have been working on my lungs in almost every workout, and I hit 210 pounds on dead lifts! I also started taking Orkambi, but the jury is still out on if I have seen benefits from it.

So that brings us to my 2016 goals. What am I going to work towards this year? What am I going to do to reach those goals?

1. Make it to three years of 100% compliance with breathing treatments.
2. Stick to my workouts (continue to get stronger and work harder).
3. Work on my nutrition (find a balance between eating healthy and keeping weight on).
4. Stay positive (no matter what, I will keep pushing and fighting. When times get tough, I'm going to keep going).

Here's to a new year, new opportunities, and new goals. Happy 2016!