Saturday, January 24, 2015

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.


Friday, January 2, 2015

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!