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!

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.

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.

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!

Small Hiccups Are Part of the Battle

Today was my second attempt at a clinic appointment, since September 16th didn't quite work out and ended up with my car being smashed and me not actually making it to Vanderbilt. I went into today's appointment knowing that my lung function would not be as high as I would like it to be. I have been feeling more congested the past few days and really the last couple weeks.

We made it there in one piece this time. I went into the pulmonary function test expecting the worst. Even though I blew with all that I had, I just couldn't muster what I usually can. My FEV1 was 42% all three attempts. That's down from 47% in June. My concerns were confirmed. My lungs are struggling right now. The good news is that my weight remained virtually the same which indicates that I'm not sick sick... just a little low in my numbers.

My doctor and I discussed how I have been feeling the past few weeks, and she was not overly concerned with the drop in lung function. She felt it could be from allergies or just a small flare up from the MRSA in my lungs. We decided that the best course of action would be to do a round of some strong oral antibiotics paired with steroids to hopefully give me a little kick start so that I can start feeling like myself again.

She was very complimentary of my commitment to compliance with my treatments. She was very pleased with my overall health. So even though my numbers aren't where I want them to be, I'm not letting myself feel defeated. We have a plan, and I am going to push through this small hiccup like all of the others.

I appreciate all the prayers and well wishes. You all help me stay motivated to be the best version of myself every day! So thank you for that!

Month 1 on Orkambi

Back in July, this new drug, Orkambi was approved by the FDA. Orkambi is the second drug that has come out that actually treats the underlying cause of cystic fibrosis. I wrote a post about it, and you can read that here. After jumping through hoops for my insurance company to cover the quarter of a million dollar yearly price tag, I finally started taking Orkambi on August 14.

 I was told by many others who had already started taking it that it would cause quite a few side effects that would not be very pleasant. One day into taking it, I already started to feel what others had been calling "the purge." My lungs became tight, and I started coughing up a ton of junk. The chest tightness lasted for a few days, and as soon as it started to lessen, my nose turned into a constantly running faucet. They say that the first few weeks is filled with your body getting used to the new medicine and the medicine causing all of the deep down, old mucus and junk to be moved up and out of the lungs.

During the first couple of weeks, I felt pretty terrible, but I just pushed through it. The coughing slowly became less, and my nose slowed down with the running. Throughout all of it, I continued with my treatments and with my workouts which were much more difficult while my chest was tight.

I've been monitoring my PFT at home, and it did seem to drop some. At my last clinic appointment, my FEV1 was 47%. According to my at home reader, I've been running at 43% lately. A month into taking Orkambi, I was due to have my clinic appointment. This past Wednesday, I headed to Nashville for it, but unfortunately, I didn't actually ever make it to Vanderbilt. We got into a car accident in downtown Nashville... only about 10 minutes away from my destination.

My car ended up have some damage that made it impossible for me to drive it. My husband and I spent the rest of the day trying to figure out how to get back to Knoxville without a car. My insurance tried to get me a rental car, but sadly, there were none available in the correct price range. Thankfully, I have amazing friends and family, and we were able to bum rides back home.

Since I missed my appointment, I had to reschedule. I won't have my clinic appointment until October 21 now. So, we wont know for sure how Orkambi is effecting my lung function until then.

I'm just taking it all one day at a time, because it seems from reading others' stories that it takes awhile before you might see any positive lung function changes, and some don't see any increase. It's all just a waiting game right now. I'm still hopeful that I will see some of the benefits that this medicine can make happen. More updates on my progress to come...

How does CF really affect my life?

I like to tell people that I don't let cystic fibrosis determine what I can and cannot do with my life. The truth of the matter is that CF does affect my life. It makes things more difficult, it is time consuming, and it tries to limit my physical ability. When I decide I want to do something, I have to fight for it, and I put everything into it. There is no doing things halfway. In the interest of bringing some awareness to what life is like living with cystic fibrosis, I wanted to shed some light on my daily life.

My days are filled with medications and breathing treatments to help maintain my health. Those are the basic necessities for those of us living with the chronic disease. I do two breathing treatments a day which include using hypertonic saline (a salty solution inhaled to loosen mucus and irritate the lungs to get said mucus out), pulmozyme (an inhaled medication that is supposed to thin the mucus), and the vest (a literal vest that shakes in order to shake and loosen the mucus in the lungs). My day starts with one of my treatments at 5:00 in the morning and ends with my second treatment before I go to bed. The morning treatment takes about 30 minutes while the evening treatment takes around 45 minutes.

I take numerous medications throughout each day as well. Those include digestive enzymes which supplement the enzymes my body is unable to produce. I take six with every meal and four with any snacks during the day. I also take anti-inflammatories and numerous vitamins to help my body stay healthy.

Those are the regular things I do everyday. If I am sick, my doctors add to my daily regimen. Usually, I will end up on oral antibiotics and sometimes steroids. If those don't kick whatever is going on in my lungs, I end up with a picc line which is for at home IV antibiotics. My husband just loves when I have have to have a picc, because I am such a big baby. :) Having an IV in your arm definitely complicates everyday life.

Daily medications have always been the easy part of maintaining my health, but the breathing treatments have been a whole different story. Many of you have been following my resolution to be 100% compliant with my treatments. I made it 365 days in 2014 and am now 24 days into 2015 with 100% compliance.

Now that I've mastered the whole compliance issue, I had to figure out what else I could do to push myself even further. I workout four or five days a week. My workouts include a little bit of everything including my favorite, lifting heavy weights. I'm up to 155 pound dead lifts and 100 pound front squats. What??!! :) I'm so proud of those numbers especially since I only weigh about 115. I have also started walking on the treadmill while doing my morning treatments. That has proven to be difficult due to the multitasking involved, but I'm hopeful that it will help in improving my lung function.

As if that weren't enough, I also have to make sure to get plenty of rest and eat plenty of food to maintain my weight. On top of that, I am a fourth grade teacher which takes a huge amount of time. I work all day and take work home with me almost every night, and I write lesson plans on weekends.

I don't really have any free time, but it is all worth it. I am living my life to the fullest following my dreams and doing things I didn't even know I wanted to do. I am incredibly thankful for all of the medications and treatments available to those of us living with cystic fibrosis.

 

Down but Not Out

Today has been quite the emotional roller coaster. If you have been following my posts, you know that I have been working extremely hard to take control of my health. I went into today's clinic appointment knowing that my lung function probably wasn't going to improve, but my hope was that I would maintain the 47% that I reached three months ago. Unfortunately, my lungs had other plans. My lung function today dropped 4% to 43%.

My initial reaction was total frustration, and I had trouble keeping back the tears. I have worked so hard the past six months, and it is so hard to not see it pay off in the numbers. Just like I mentioned in my last post, I keep reminding myself that it's truly how I feel that matters.

When the doctor came in, we discussed how I've been feeling congested and how the weather changes seem to make it worse. She was concerned about the drop in lung function and asked a lot of questions about how I've been feeling, how I've been doing with my treatments, and how I'm doing all that I'm doing and still having time to sleep at night. After all of that, she decided to put me on an antibiotic for two weeks. I'll be doing a follow up PFT the week after Christmas. If we don't see some positive movement, I will probably have to get a PICC line. It's been two years since I've had to be on IV antibiotics, and I am not a fan. You better believe that I will be doing everything in my power these next few weeks to knock this in the butt.

Something that my doctor said today, really stuck with me though. She was telling me not to get too frustrated and not to let this stop all of my hard work. She pointed out that this is the nature of cystic fibrosis. You can do everything right, but sometimes, the bacteria growing in your lungs gets a little out of control, and we have to do something to push it back down. CF is a disease that does not care how hard you are working or how much you want to see improvement. It's unfair, and it's difficult, but it's the card I have been dealt. So that is where I am at right now. I'm working to push my bacteria back down so that my hard work can start showing again.

I have faith that this will work and that things will start looking up again. All I know is that I'm not giving up, and I am going to be pushing myself even harder.

Apprehensions

As many of you know, I have been working incredibly hard to improve my lung function and overall health. I have been 100% compliant with my breathing treatments for 341 days now. I have been working out with my trainer since the end of June, and I feel stronger than I ever have before. So you would think that I would be feeling confident and ready for my clinic appointment coming up this Wednesday. Right?

Wrong. I am apprehensive going into my appointment due to the fact that I have been congested so long. Once the weather began turning, it was like my lungs and nose decided to stop functioning the way they should. I keep reminding myself that it doesn't really matter what the numbers say... What really matters, is how I feel. The problem is, I really do care what the numbers are, because I have been working so hard to improve them. Even though I'm feeling pretty great, and I am able to do things in the gym that I never even imagined myself doing, I can't help but feel frustrated by the idea of not seeing improvement in my lung function.

As there is nothing more I can do about this issue, I will just pray about it and try to have positive thoughts. Only two more days to worry about this. And more importantly, only 24 more days until I reach my goal of being 100% compliant for a full year! Now that is something to look forward to! :)

I admit defeat!

If you know me at all, you know that I can be very stubborn when it comes to just about anything. If you have been following my story lately, you are aware that I have been working on being 100% compliant with my breathing treatments in 2014. (I am now on day 154!) I have been doing all of my treatments, but it has come to my attention that I have not been doing everything in my power to better my health.

At first, I was completely satisfied with maintaining my lung function through the school year without getting the flu. In fact, I was pretty ecstatic. I was spending the first few months of 2014 feeling pretty good, but as the school year wound down, I started to feel a little under the weather. It continued to escalate through the month of my coming to a climax for my clinic appointment last Wednesday. I was feeling terrible with my nose completely congested and my cough remaining pretty constant and wet. I knew going into the appointment that my lung function would be down. Sure enough, it had gone down from 46% to 43%. My doctor wasn't extremely worried. In fact, she told me that she believed it would have been a lot worse if I hadn't been compliant with my treatments this year. That was good to hear, but I was still not feeling great. She wrote me a prescription for antibiotics (Vyvox which is used to treat the MRSA that I have in my lungs). I went home with a lot of mixed feelings. I was proud that I kept my lungs as healthy as I had, but I felt defeated because even with all of my hard work, my lung function dropped.

It was the next day that I saw a Facebook post from one of my friends and fellow CFers about his FEV1 numbers. He talked about being frustrated when he felt that his numbers weren't going up and what he did to change that. He had been doubling up on his hypertonic saline (treatment of an inhaled saline solution that causes the lungs to be irritated in order to help move mucus up and out of the lungs). Now, you have to realize that I have always been told to add in extra treatments when you are feeling bad, but it was something that I did not do very much of. Adding treatments meant taking more time out of my day to do something I really hated. This was the first time I had heard someone say they do extra treatments even when they aren't feeling bad.

As I read about the difference it was making in his life and in his lung function, I realized that I hadn't been doing everything in my power to make myself healthy. I decided that day to step it up. I'm still only doing two treatments a day, but I have amped them up quite a bit. Instead of just doing one hypertonic saline vial in the morning and one at night, I'm doubling it up! I do two in the morning and two at night. I have also increased the time I spend doing my vest (used for airway clearance). I went from doing that for twenty minutes to thirty minutes twice a day. Every morning and every night, I am now spending thirty minutes wearing my vest and breathing in my hypertonic saline.

I'm now on the sixth day of this new routine, and as much as I hate to say it, I can see a huge difference. Ha! I have never been one that wants to put in extra time to fight my CF, but it really does work. It's been miserable, and I really pretty much hate every minute of the intense coughing, but there is no doubt in my mind that if I did a PFT right now, my numbers would be closer to where they were three months ago. So, now when I say I'm being 100% compliant, I am really doing more than 100%! I am putting every effort into feeling my best!

Now that I am finally feeling better, I am going to be kicking the exercise back into high gear as well! Summer break is going to be good for me, and I'm hoping that I will see the benefits when I have my next clinic appointment at the end of August!

So, there you have it. One of the most stubborn people in the world has completely admitted defeat and given in to doing something she didn't want to. :) It's all for the greater good! I just have to remind myself each time I sit down to do my treatment that it really is making a difference, and I am just going to feel better after each one. I have to give myself a little pep talk every time, but I know I can do this! Here's to double hypertonic saline!! Here's to feeling better and doing everything it takes to reach your goals!

Trip to Vandy

Last Wednesday was my clinic appointment. As most of you all know, I have been working very hard to keep up with my treatments. My resolution for this year was to be 100% compliant (or as one of my friends says, 100% victorious) in 2014. So far, so good! I'm now up to day 54! I've also been doing some weight lifting to gain some muscle mass so that I can have some weight that is more difficult to lose.

My hard work is paying off so far. I gained 3.6 pounds, and my lung function was exactly the same as it was 3 months ago! That might not sound so great, but I'm counting it as a huge victory after last year. As many of you know, last December, I came down with the flu, and it was really awful. I lost about 10 pounds, and my lung function dropped about 14%. The fact that I have maintained my lung function through this winter is a wonderful thing! Now that I have made it through the most difficult time to stay healthy, I can concentrate on trying to improve my lung function. Long story short, I'm thrilled with my results from Wednesday, and I am hopeful for what's to come the rest of this year.

In other news, my husband and I are in the process of buying our first house! We are so excited and nervous about the whole process, but it has been a long time coming. We are ready to have our own place that we can put work into and make perfect for us. I also had my third evaluation of the year a couple of weeks ago! That means I only have one more to go. I can't believe how quickly this year has gone!

Finally, it's that time of year again... The Great Strides walk is quickly approaching, so be on the lookout for my fundraising to start in the very near future. I've got a lot of work to do, and we have some hefty goals for the walk.

Happy Sunday! I hope you all have a wonderful week!

2014 New Year's Resolutions

It's been way too long since I wrote a post... A lot has happened since my last post including another trip to clinic that showed my lung function staying at about the same as in August. After wasting so much time being frustrated about the lack of improvement in my lung function, I have decided not to focus on that aspect of my health nearly as much this year. Last year, and in other years past, I have set a goal for my lung function to reach. This year, I'm going to focus on setting goals that can help my lung function improve but that are completely in my control. I can't necessarily control what my lung function does, so it's not something I should be basing my goals on.

That being said, here's a list of my health related New Year's Resolutions:

1. 100% compliant with treatments in 2014
2. Train for a 5K
3. Continue with my weight training
4. Workout 3-5 days a week

Some of those should be a given, but they are all things I have tried and struggled with in the past. It's time for me to step it up though, and make them all happen. I want to do everything in my power to stay away from hospital stays and picc lines! I'm hoping the health goals will help. 

Here's to a new year and a newer, healthier me!

Happy New Year!

Frustrated but full of hope

Well, today was my clinic appointment at Vanderbilt. Many of you know how hard I have been working this summer to make my lung function and weight go up. Today is day 94 of 100% compliance with my treatments, and I started doing Insanity last week. I was hopeful for today's appointment. I really wanted to see my numbers go up, but I did not set a goal for my lung function due to being disappointed the last few times.

My lung function today was at 48% which is about what it was last time. I was definitely frustrated, but I have been told by quite a few people that sometimes, it takes longer for your hard work to actually show up in your numbers. Keeping that in mind, I'm trying not to be too disappointed with the lack of movement. I still maintained my lung function which is good, and I still have hope that I will see improvement in the future.

Here's the exciting news: I have been working really hard on gaining weight.... I gained 8 pounds!!! My doctor was thrilled to see that and encouraged me to gain a few more pounds. He was also very happy to hear how hard I've been working and felt that I might see more improvement in my numbers next time.

He said my lungs sounded great, and that's all I can really ask for! :) We also talked a little about the hope that the new medications that are in trials right now offer. I'm excited to see what the future holds for me.

My plan moving forward is to just keep doing what I'm doing. I'm going to continue working out everyday and being compliant with my treatments. I'm going to put everything I have into my health so that I have no regrets. I have so many regrets from my college years when I completely neglected my health, and I am determined not to have any of those for this time in my life.

Change

Today, as I sat and enjoyed the beach, I realized how much things have changed for me lately. I have been 100% compliant with my treatments for 49 days now! I missed one yesterday due to the long drive down here, but I made it up with an extra treatment today. There was a time not that long ago that I thought it was okay to just take the week off. If I was going to be on vacation, I was going to fully enjoy it. I wouldn't even bring the things needed for my treatments.... My, how times have changed.

The biggest change that I have noticed now that I am being compliant with treatments is how missing one or not being able to do my morning treatment right away affects me. Yesterday, as we were driving to the beach, I noticed that I was coughing more, and it was a wetter, more congested cough than usual. As soon as I did my evening treatment, I felt much better. I can't decide if this is a good thing or bad thing. In one respect, it motivates me to stay compliant with treatments since it makes me feel better. On the other hand, I used to go a week without doing treatments, and I wouldn't feel the consequences of it. It's no secret that my lung function is much lower now than what it used to be, but I'm still determined to keep it as high as I can.

It can sometimes be frustrating to have to prolong going out to the beach to do a breathing treatment, but it's worth it if I can feel as good as possible while enjoying the sun and ocean. :) I think back to college when I basically stopped taking care of the CF part of myself, and I want to kick that version of me. It was so silly, but I'm thankful I came to my senses when I did because I still have a lot of great things happening in my life! I can't erase my past mistakes, but I certainly can learn from them.

Small Update

Since my doctors were not thrilled with my numbers being down at my last clinic appointment, I went on oral antibiotics for two weeks and went in for a follow up PFT on June 17. My FEV1 went up slightly from 47% to 49%. My doctors were still worried about it, but I told them I was feeling fine. Honestly, I just really want to enjoy my summer and not be stressing out about antibiotics and PFT's and numbers. I want to be able to concentrate on my health without putting the pressure of getting the right numbers for my lung function. I did gain 3 pounds during those 2 weeks, and that made my doctors less worried. I guess they figured that if I'm gaining weight, the lung function will follow.

I've been working really hard to make my lungs improve some. Today is the 29th day of not missing any treatments. We went on vacation, and I didn't miss any while I was there. That's a huge deal to me, because there was a time when I wouldn't even take my breathing treatment stuff with me on vacation. It was not the wisest decision, but in my head, it wouldn't matter if I took a week off. Obviously, I have come to my senses, but it did take awhile for that to happen. I'm also getting back into walking... Tonight, I went 3.5 miles. I'm not quite ready for any running, but hopefully, we will be working that into the regimen at some point.

Long story short, I am trying to enjoy every moment of my summer break while taking care of myself and getting the rest that my body needs. My next clinic appointment is August 28th, so I will worry about my numbers at that time. Until then, it's all about just being healthy! :)