Why Great Strides is important to me

This is something I wrote last year before the Great Strides walk, and it still rings true. It is so very important for us a CF patients and families to step up and raise money. I'm starting my fundraising process on social media, and if you are interested in making a contribution, all you have to do is click on the picture below. 

As Great Strides has been creeping up on me, I've been thinking a lot about how far we have come even in the last 20 years. When I was diagnosed with cystic fibrosis in 1993, I was 6 years old. That in itself shows you where we were and how different things are now. Newborns are all screened for CF now. It is very rare for someone to slip through the cracks like I did. The life expectancy for those of us with the disease was around 15 years when my parents found out. They had never even heard of CF, but they knew that they would be doing everything in their power to fight this horrible disease.

When I was 10 years old, The Vest was a brand new thing. I still remember the day that I got it. I was so excited (a feeling I don't really have about it anymore). It was a huge deal because up until that moment, I had spent every morning and evening lying on a declined board while my parents pounded on my back and sides. I just remember hating every minute of it, and I know my parents felt horrible doing it.

Fast forward to a few years later, I was a freshman in high school in my honors biology class. We had a substitute, and there was a small excerpt in my textbook that we were reading out of about cystic fibrosis. At first, I was pretty excited to see CF mentioned in something... That excitement quickly faded when I began reading. I read that day that my life expectancy was 16 years. Keep in mind that I was 15 years old at the time, and my parents had never mentioned life expectancy before. They wanted me to live my life to the fullest, and that meant not worrying about how much longer I had to live. I was devastated, and it took a little time to work through that and to realize that a number in a book had no effect on me.

I used to spend an extra 20 minutes twice a day doing my TOBI treatments, and that is now in a podhaler form that takes no time at all. Kalydeco, the first drug to treat the underlying cause of cystic fibrosis, was approved in 2012. Clinical trials are ongoing for Kalydeco and VX-809 for those of us with deltaF508. There is an inhaled form of Vancomycin (an antibiotic used to combat MRSA which I grow in my lungs) in trials right now. 

There have been so many advances in the cystic fibrosis world, and it is mind blowing to think that children with CF now have so much more hope for the future than I had when I received my diagnosis. The life expectancy has gone up drastically from 15 to close to 40 years! What an amazing thing! That's only possible thanks to all of the money that has been raised over the years to help fund the research and advancements it has led to. That is why I work so hard to raise money for the Cystic Fibrosis Foundation. Some of the new things may not help my lung function get much higher than it is right now at 48%, but they could definitely keep the lung functions of those children from dropping so quickly to where mine are.

I urge you all to stand up for your loved one with CF. With so few people living with cystic fibrosis, if we don't fight it, who will? We are the biggest hope for the future in the battle against cystic fibrosis.

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.

 

Great End and Even Better Beginning

Everyone seems to be giving a little recap of their 2014, so I thought I would join suit. 2014 was a fantastic year, because it was the year that I finally took control of my health. I made choices that are positively affecting every aspect of my cystic fibrosis life. I made a resolution last year to be 100% compliant with my breathing treatments in 2014. Honestly, I wasn't sure I would be able to do it since I have struggled with compliance for quite some time. In fact, during college, I rarely did my treatments... how I wish I could go back in time and knock some sense into my younger self.

 I also started working out with a trainer who has been creating workouts for me that are specific to my body's needs. I have been doing things that I never thought I would be doing. I can dead lift 135 pounds! That's 21 pounds more than I currently weigh!

Another big change in 2014 was my vest. I invested in the Afflovest, and I love it! I can really tell a difference in how productive my cough is during my treatments. I'm so grateful to have the opportunity to use this new piece of technology. The fact that it has a battery makes it even better because I have had the opportunity to use it in the car and at work a few times!



Now for the best part of 2014/2015. As many of you know, my last clinic appointment did not go quite as well as I had planned. My lung function had dropped from 47% to 43%. After discussing it with my doctor, she decided to put me on Zyvox which is a pretty intense oral antibiotic that is used to combat the MRSA that I have growing in my lungs. She also wanted me to do a follow-up PFT in 3 weeks to make sure I was doing better. If there was little or no improvement in my numbers, we were going to try a PICC line with Vancomycin.

After the first week of antibiotics, I was feeling much worse than I had been when I was at the doctors. I called, and they decided to add yet another antibiotic along with steroids to help my body jumpstart the healing process. That seemed to do the trick, because I began feeling better after just a few days.

And that brings us to today. I went for my follow-up PFT, and I was pretty nervous. I was feeling great, but that doesn't always translate into the numbers. My lung function was at 49% today! Not only did I make it back to where I was in August, but I surpassed that and almost made it to 50%! I could not be more excited and relieved with my numbers today! It just continues to show me how much my hard work is paying off, and it encourages me to push even harder!

So as of right now, I don't have any specific resolutions for 2015, but I will say this: I will continue being compliant with my treatments, and I will continue pushing as hard as I can in my workouts. There is not a doubt in my mind that those two things are the reason my lung function is the highest it's been since June 2013. I feel amazing, and I can't wait to see what this year brings!

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! :)

What motivates me?

I have been asked multiple times how I stay on track and compliant. What is my biggest motivation? How do I talk myself into doing the breathing treatments and workouts? What gets me going everyday? So I have decided to take those questions and use them to fuel a post.

As many of you know, I have really struggled with being compliant with my treatments in the past. It has truly been one of my biggest obstacles when it comes to taking care of myself. I always hated them as I was growing up... so much so that when I moved away for college, I pretty much stopped doing them altogether. That took a huge toll on me. It hurt my lungs and lung function, but it also made it that much easier for me to talk myself out of doing treatments. It has been quite the uphill battle ever since.

I started trying to be 100% compliant on multiple occasions only to fail after 20, 30, or 50 days. When I set my resolution this year to be 100% compliant in 2014, I knew this attempt would be different. I was going to be successful, and so far, I have been. I am on day 254, which means that I have not missed a treatment since before January 1, 2014.

So what was the difference this time? People have always told me that you have to work towards your goals for yourself or it won't work. If you don't do it for yourself, you will never be able to maintain your goals. The problem was that this never seemed to work for me. For some reason, thinking of myself just really was not enough motivation for me to stay compliant with something that I really hate doing. I had to change my thinking to make this work.

I changed my approach. I started thinking about the people I love that would be affected by my health declining. I thought of my husband, my parents, my sister, my in-laws, and all of my friends who support me in every attempt I make at keeping my health up. I have seen so many people deal with the loss of a loved one, and I just couldn't bare the thought of causing that pain because of not trying.

I thought about the idea of starting a family in the future be that biologically or through adoption. For both of those to be a possibility, I have to be healthy. If I were to become a mom, I would definitely want to make sure to stick around as long as possible, and I can only do that by taking care of myself.

Thinking about others is how I got over the initial hump of being compliant. I struggled ever day to make myself get up early and do my morning treatments. I came home from a long day of teaching and made myself do that evening treatments. I had to remind myself daily why I was doing this. Who was I fighting for? Why was it so important? Why did I want to be miserable doing treatments?

After awhile, it started to take a turn... I have started doing it more for myself. I feel better than I have in a long time. A couple of weeks ago, I didn't get my morning treatment in until 11:00 am due to lack of time that morning when I had been used to getting it done at 5:00 am. I was blown away by the difference it made. I felt more congested and tired when I didn't get that treatment in first thing in the morning. These treatments open my lungs and get me ready for the day. I don't want to skip them anymore. (Of course, there are still days where I really struggle making myself start the treatment, but I am always glad I did it.) I still don't enjoy the time I spend doing my treatments, but I love the outcome.

Once I got the treatments under control, I really began focusing on the workout part of staying healthy. I began working with my trainer at the end of June. It was much easier motivating myself to go to the gym to kick some butt each time. I really enjoy working out, and I enjoy the results even more! Of course, it doesn't hurt that my trainer is great at motivating me to keep going even when I feel my lungs are closing up on me.

The key to becoming successful is to really find out what will motivate you, and take it one day at a time. It does eventually get easier. I still have to tell myself why I'm doing it, but it is not as hard to make myself start each treatment. The results of being compliant and working out are undeniable. In May, my FEV1 was 43%. In August, it was up to 47%! That in itself, is huge motivation to keep it up!

A Healing Summer

It has been over two months since I last posted on here. As most of you know, I started kicking my breathing treatments into high gear. I began doing double doses of hypertonic saline, and I started to notice a difference. I was coughing less, and I was just feeling better overall. As exciting as that was, I was still not in the most positive place.

I like to stay optimistic about my CF, and I do everything in my power to not let it hold me back from anything. The issue stemmed from the pattern that I had been seeing in my lung function. It has always bounced around quite a bit, but over time, the general movement has been in the downward direction. It has been getting more and more difficult for me to get it back up after being sick, and when it does start going back up, it is very slow going. I was at a loss for what to do. I was not ready to give up of course... I'm way too stubborn for that. I knew I needed to do more than just the extra breathing treatments and staying compliant (Today is day 221!).

On June 26, I started working with a trainer. I went to him with some goals that he is probably not all that used to hearing. Not only do I want to see a rise in my lung function, but I want to gain a little weight to please my doctors. He took on my challenge and has been creating a program specifically suited for my goals and physical limitations. Since beginning my training, I have been feeling great! I'm getting stronger, and could even tell a difference in my lungs when we played baseball and football during our trip to Iowa a couple of weeks ago.

I won't know officially the difference it is making in my lungs until my clinic appointment on August 27, but I did invest in a little PFT monitor that I can use to check my lung function at home. While I don't know how closely it correlates with the machine that is used at the doctor's office, I have been seeing some positive changes in my numbers. When I first purchased the monitor in June, I blew a 42.2%. Last week, my result was 44.7%!! Again, I don't know what my numbers will look like with the actual machine used at my clinic appointment, but this does show that my numbers are improving! I could not be more excited!

This summer has been so great for my health and for my emotional well-being. It has given me time to refocus on my health, and I am extremely dedicated to becoming the healthiest and happiest me!