Blood... Oh my...

Thursday night was one of the scariest experiences for me with cystic fibrosis to date. This past week, I was at the beach with my husband's family thoroughly enjoying myself and every minute of the vacation. I was feeling great. My lungs felt clear as they usually do during my time spent at the beach, I had been going on long beach walks, playing games, swimming in the water (watching carefully for sharks :/ ), and completing my workouts provided by my wonderful trainer.

Everything was going better than I could have even hoped until that night. After finishing my breathing treatment for the night and finishing the chapter I was on in my book, I lied down to go to sleep. The feeling came on quickly, and it is something that I had never experienced before. There was a crackling in my lungs that told me I needed to cough which is common in my lungs, but it was followed by a gurgling feeling that truly felt like I was drowning. When I coughed to try to clear it out, my mouth filled with fluid which completely confused me.

I ran to the bathroom to spit it out in the sink... It was bright red. I quickly realized what it was. I was coughing up lots of blood. The sink began to look a bit like a murder scene with blood in the sink, on the mirror, on the faucet, on the counter, and on my face. It was terrifying. I have never been a fan of blood as it is, but when it is coming from my lungs, it is on another level. I won't say I panicked, but there were definitely tears in between spitting blood, and my husband was a trooper. While I had read a little bit about this happening in CFers, he had no clue it was a possibility. He did offer to call 911, but I reassured him that I didn't think it was necessary.

Normally, I would have called my CF doctor right away, but unfortunately, it was 2:00 am when this finished. I called them first thing Friday morning to see what they wanted me to do about this new issue. They decided to start me on an antibiotic, because many times, hemoptysis (bleeding from the lungs) can be caused by an infection. They also told me to lay off my Pulmozyme and hypertonic saline for 3 days to give my lungs a rest. (However, I am going to continue counting these days as being compliant with my treatments seeing as I am just following doctor's orders.) Since that night, I have coughed up more blood 3 more times, but I'm hopeful that it's finishing up since it's been 16 hours since my last episode.

It is just a reminder that living with cystic fibrosis is an never ending battle. No matter how well you are taking care of yourself, it can still rear its ugly head and remind you who is really in charge.

So how does this change my game plan? It doesn't minus these 3 days of no treatments and the antibiotics that I am on for 2 weeks. I will go back to being 100% compliant with my treatments, and I will work out as vigorously as I have been after a few days of rest. Life goes on. The fight continues. I have a lot to live for, so I will continue fighting to make that happen.

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!

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!

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!

Does it get any easier?

Those of you who have been following my story know that being compliant with breathing treatments has been a huge struggle for me. Breathing treatments were a source of bitterness and frustration beginning in high school that has continued through my young adulthood. When I got the opportunity to go off to college and gain my independence, I chose to use that freedom to skip out on most of my breathing treatments. If you haven't read about the consequences of those decisions, you can do so here.

After the wake-up call that was the lung transplant scare, I decided that it was time to turn my life and my health care around. I had every intention to do so, but I still struggled with staying compliant with my treatments. My lung function has fluctuated since that 59% in 2010. I have made the goal to be 100% compliant multiple times now, and I wish I could say they were extremely successful. The problem is that I stick to it for a little while, and I always fizzle after awhile.

I vowed that 2014 would be different, and so far, it has been! My new year's resolution was to be 100% compliant this year. It has now officially been my longest stretch of compliance since high school! I'm on day 118, and I am so proud of myself. Going back to the title of this post, it really does get easier. I have gotten into the habit of doing my treatments. I even throw in extra treatments when I'm not feeling well which is a huge deal when it comes to me. There was a time when I would have never even considered doing an extra treatment voluntarily!

Even though it is getting easier to stick to my treatment compliance, I still dream of the day when those of us fighting cystic fibrosis don't have to deal with breathing treatments and other medications daily. Help me make that dream a reality and add tomorrows for cystic fibrosis patients! Just click on the link, and make a contribution. I cannot stress enough that there is no amount that is too small! Every little bit adds up! Please help!

I have a lot of work to do before I reach my goal of $8,000. I can only do it if you help! Thank you all for your continued love and support!

Back to School

Well, after two weeks of winter break followed by three snow/cold weather days, I am finally going back to work tomorrow. I don't really know how I feel about it, because I do love my job and have missed my kids. At the same time, I have really gotten used to being around the house all the time and actually having time to get household chores finished. It's been a nice relaxing break that I have thoroughly enjoyed! Throughout the break, I kept thinking back to how sick I was this time last year and how that really ruined everything I tried to do. I felt so weak and tired from the beginning of December through the end of January. I'm so thankful for being healthy this year. I just hope it continues.

Speaking of staying healthy, I'm doing everything in my power to do so. It's January 8th today, and I have been compliant all 8 days of 2014! I know it seems small, but you start somewhere. I'm on the right track. The break has been bad for my gym routine, but that will be back on track now that I'm going back to work and back to the real world.

So here's to the 2nd semester of my 2nd year of teaching! I hope it goes smoothly. :)

Catching Up

This is kind of a catch all post, because I have been ridiculously busy and have completely failed at creating new blog posts. First things first, I started working again on August 5th, and students returned to school August 12th. It was such a crazy feeling seeing my students from last year walking down the hallway to their new 5th grade classrooms. I definitely miss them, but I'm so excited about my new students. They are so energetic and ready to learn, and I can't wait to see what this year holds!

Tennessee has adopted a new set of standards, so I have been busy learning what these standards are and how to begin teaching them. Our county also adopted a new reading series which means that I'm starting reading plans from scratch while trying to figure out all of the new things that offers. With so much change, I've been working extra hard to just learn how to teach the new stuff. Then you have to add on the time I've spent actually planning lessons. It has been crazy, but I love the new challenge! I'm finally starting to get the hang of it, and I'm so happy that I'm no longer a first year teacher. I feel so much more confident this year.

Now I just have to make sure that I stick to my goal of not getting sick this year. I would really rather not get the flu again this year. That was awful! I am doing everything in my power to make sure I don't have a repeat of that. I'm on day 87 of being 100% compliant with my treatments! I also started Insanity on Monday...... It is ridiculously difficult! The warm-up is hard enough, but then you just keep going onto the workout. If that doesn't help my lung function, I don't know what will.

My next clinic appointment is next Wednesday at Vanderbilt. I've decided that I will not be setting a goal for my PFT since the last few times have been huge disappointments. Just for a frame of reference, my last PFT was 49%. As long as it improves a little bit, I will be satisfied. I'm going to continue working hard no matter what my numbers are though, because I have put way too much work into it to give up now!

That's all for now, but I'm going to try to post more often now that I've got a little bit of a schedule going.

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.

Frustrated

There really isn't much new to report in my life, but I did need to vent slightly about insurance. This week, I called in my refill for Pulmozyme (one of my breathing treatment medications). I still had a few days worth of medicine left which would give the pharmacy time to get in stock since they very rarely have the medications I need available. I received a "courtesy call" from the lovely automated pharmacy woman informing me that there would be a delay on my refill. I assumed that meant they were having trouble getting it delivered and chose to wait it out.


I ran out of the medication yesterday and decided to call the pharmacy to figure out what in the world was going on. The man I talked to was very nice as he informed me that my insurance was refusing to cover the medication because they believed that I didn't need it. Let me say that I have been on this particular medication since I was diagnosed at six years old. Not to mention, I have cystic fibrosis, a lung disease, and Pulmozyme is a breathing (lung) medication. To say the least, I was extremely frustrated with the whole situation. What is the point of having insurance if they aren't going to help you when you need it?

I called my CF clinic at Vanderbilt and got the CF nurse on the job. She called the pharmacy and the insurance company and discovered that they would only cover my prescription if it is ordered from a certain pharmacy because they get a discount. (Pulmozyme is not cheap by any stretch of the imagination.) My doctor sent the prescription to that particular pharmacy, and I gave them a call. The woman told me that they would be getting in touch with me as soon as they had it in their system. Time keeps ticking away, and I have yet to hear from them about receiving my prescription. The cherry on top of it all is that it is a mail order pharmacy meaning that it may take longer to get my medicine.

Enough with the negative for the day though! I am on day 19 of being compliant with my treatments (minus Pulmozyme today). Yesterday, we had the Great Strides kickoff, and it was fantastic to get to meet some of the parents who have younger children with cystic fibrosis. Because CF is a lonely disease, I have found that I really don't know many of the people in my own community who are dealing with the same things I am. I am so thankful to be in the position to meet with and hopefully, inspire these younger families taking on the cystic fibrosis battle.

On that note, Happy Friday! Enjoy the weekend! We are supposed to have warm weather, and I intend to spend some good, quality time outside in the sun! :)