Fight every fight like you can win: March 2012

August 2nd, 1994. The day my fight began. I was a month and a half premature, weighing only 4 lbs and 2 oz. I was struggling. Struggling to breathe, struggling to live. After a month and half of intense care, worrying, tests, and fighting, I was diagnosed with Cystic Fibrosis (CF). To sum it all up, for those who don't know, Cystic Fibrosis is a chronic inherited disease that affects the lungs and pancreas because of a protein product that causes the body to produce unusually thick, sticky mucus. For the lungs, this causes life-threatening infections, and for the pancreas this causes malabsorption. It's hard to get a full understanding of what CF is unless you have been around it for awhile, so hopefully for those newbies, by following my blog you can get a better understanding.

After being diagnosed, my Cystic Fibrosis didn't affect me much through-out my childhood. I was in tune with the familiar daily regimes that it became part of my "normal life." I was to take pills on a daily basis, and do airway clearance systems to help loosen up the mucus in my lungs. I was also underweight, so I had to drink special calorie-enriched shakes to help. Between fourth and fifth grade I had two major changes in life. In January 2004, I was hospitalized for my first time since being a baby. This experience was traumatic not only for me, but for my friends and family. I still remember watching my mom break down into tears after my doctor walking in saying "So, did you bring your pajamas?" In this moment, I didn't know what was going on. I was scared. I was scared because my mom was crying and I had no idea why. I started crying because I didn't know what else to do. Through-out that hospitalization, I endured new things that would eventually become part of my "normal" life. I was put under anesthesia for the first time to receive a PICC line which would allow me to receive several antibiotics for an extended period of time. The first time they tried to insert a PICCline it wasn't successful. They tried twice in both arms. I woke up to my arms completely covered in bruises. The next day they were going to have to do the procedure again. I remember screaming and crying at my mom telling them to not do it again because my arms were in so much pain. This was the year that I started doing two new airway clearance system called "The Vest" and a inhaled medication called "Pulmozyme." I was in the hospital for two weeks and finally released.

In fourth and fifth grade I would go to the nurses office everyday to receive medications and do treatments. While doing my treatments another girl named Raven Holmes, who also had CF, would come in to get her daily shake and then take it back to class. Over the next year and a half I watched her health rapidly decline. She went from coming in to get her shakes, to being in the nurses office every day receiving IV antibiotics, being on oxygen, and sometimes sleeping because even going to school was to much for her. A lot of times while doing my treatments her mom would be in there doing her antibiotics. I wasn't exactly sure what was going on with her because at the time, my life didn't revolve a lot around my CF. I remember that she always had, what seemed like, that biggest hoop earrings. Her hair was incredibly long and her laugh was contagious. Towards the middle of my fifth grade year she passed away. I remember I was sitting in the car when my mom told me the news. The next day, I walked into the nurses office and hugged Mrs. Varney. (the nurse) We held each other and we cried. We didn't have to say anything, because we knew exactly what we were both thinking. Raven passing away changed a lot of things. People looked at me differently. People were afraid of being around me. One time I was walking out to the bus and a girl ran up to me and asked me, "Are you going to die when you're 18?" I was at a complete loss of words. I didn't know what to say. I thought about it the whole ride home and once I got home, I went to my room and cried. I cried for Raven. I cried for myself.

Middle school was when my Cystic Fibrosis started to get the better of me. My second year, I was informed that I had Psuedomonas Aeruginosa which is a bacteria that CFers catch and it infects your lungs. This causes more infections, lung decline, and eventually leads to permanent damage. If you are quick enough and catch it in time, it is possible that you can get rid of it. We were too late. Although I was fairly active playing sports all year round, I still became sick more frequently. I was hospitalized 4-5 times through-out middle school. Every hospitalization added on more medications and more damage to my lungs. Before I knew it, I was doing hour long therapies and being in the hospital became more of a familiar-custom.

My seventh grade year I became friends with Joshua Pauken, my first CF friend after Raven had passed away. We instantly became close and I knew for a fact that are friendship would forever last. His health in the beginning was unfortunately worse than mine. He was actually on the transplant list and had been for 5 1/2 years until he received the call on December 21, 2008. After finding out that he got the call I began shaking so bad that I couldn't even speak. I was at my friends house and I tried calling my mom to tell her, but my friend eventually had to take the phone to tell her what was happening. My mom came and picked me and my friend up and we went back to my house. I sat on the kitchen floor constantly crying with just so much excitement and fear. I had numerous thoughts racing through my head. "Will this be the last time I talk to him?" "Is this really happening?" While I was sitting there, my mom just randomly said, "Do you want to go up and see him?" Normally, the hospital is only an hour and a half away from where we live, but due to a severe winter storm, It took us nearly three hours. I remember walking into his hospital room and having no idea what to say. I wanted so many times to break down and cry, but I held strong. Those next few months were filled with sleepless nights, long, dreaded days, and endless hours of crying. His battle post-transplant was incredibly difficult, but he made it through. Today he is healthy and breathing easy.
I also met another CFer, Trae Guzman, while being in the hospital. We talked through myspace messages and eventually went on to Facebook. He was only two years older than I was, but much more sicker. He was on oxygen 24/7 and in the hospital more than he was at home. One day while logging onto Facebook I went to send him a message and went to his profile. The first thing I saw was "R.I.P. Trae." My heart stopped. My breath was literally taken away. I didn't know what to think. I couldn't register anything. I couldn't cry. Days later, I finally was able to cry. So much heart-ache was being poured out of my eyes. I was crying so hard that I wasn't even making a sound. Not a day goes by that I don't think of Trae or Raven. Not a single day.

Most people say that high school will be the best four years of your life. High school changes you and helps shape who you are. Friends will become enemies. Enemies will become friends. For me, high school was the hardest, worst, and most life-changing four years of my life. I became sicker than I ever have. I faced severe depression. I lost friends who I thought would be in my life forever. I faced obstacles that felt nearly impossible at the time. Freshman year I was only hospitalized 2 times. I played JV soccer, I met one of my best friends online, who also has CF, Lauren Czerwonka, and I was doing pretty okay health-wise.

My sophomore year I started to really realize how different my life was from others. I started to develop severe depression and anxiety. I didn't have a care for the world. I had numerous panic attacks sending me to the hospital. I skipped my treatments because I was fed up with getting up at 4:30 AM before school. I was fed up with being different from everyone. I started to become very sick. I was playing JV soccer which wore my body down more and more everyday. I began distancing myself from everyone and spent most of my time in my room. I had an incident where I tried to kill myself by overdosing on pain medications, ibuprofen, aspirin, Xanax, and sleeping pills. Call me crazy, call my psychotic, but I told everyone I was going to be honest. Unless you would have known what I was going through at the time, you wouldn't judge. Taking all of the pills resulted in me coming in and out of conciousness for 4 days straight. I didn't tell my mom what I did. I didn't tell anyone. For the time being, I told my mom that I wasn't feeling well and wanted to sleep. Between those four days, I began to feel like I was actually going to die. I tried hard to wake myself up, but I couldn't. After all of the medications have weaned off, I really began to think about life. I learned that what I was doing was pathetic and I should be grateful for what I have.
After that incident I tried harder to focus on my attitude towards life and my health. Because I had neglected my treatments for so long, my efforts towards working for better health didn't work out. I started becoming sicker and sicker until I was at the point where I couldn't even finish a sentence without gasping for air. Walking up the stairs at school became what seemed like impossible. I tried my best to hide how I was feeling by smiling and laughing and never complaining. After a short while my mom began to notice how short of breath I was. She questioned me and I told her I was perfectly fine. I still continued to play soccer and I still tried to focus on my health. My next doctors appointment proved me other wise. My lungs were only functioning at 29% from the normal 60-65%. I knew for a fact that I'd be going into the hospital. By this time I was used to how hospital life was and the nurses became familiar faces. On my arrival I always had my vitals taken. (Blood pressure, temperature, o2 sats, weight). Usually everything is pretty normal. This time my weight had dropped from 112-98, my oxygen sats were in the low 90's, (usually around 97), and my respirations were double the amount they should have been. I was immediately put on oxygen. During those two weeks (basic time for CF patients while hospitalized) I told myself that I would never let this happen again. I would try everyday to be compliant with my treatments and health no matter how bad I wanted to quit.

Ever since then I have continued to do daily treatments, but due to permanent damage, scar tissue and Pseudomonas, my health still declines. I also started experiencing what it was like to have kidney stones. Sometimes they resulted in peeing blood, nights to the E.R., and pain so intense that I would vomit for weeks on end with no way to subside it. Having kidney stones is common in CFers because of the way our body absorbs and digests food. This causes a build-up of calcium which eventually leads to the formation of stones. Luckily, I was able to pass one stone. I have also received two lithotripsy procedures to blast stones since they were to big to pass on their own. (One was 9 mm.)

Over one of my hospital stays we had a tornado warning which meant all of the patients had to go out into the hall. In the room next to me there was a girl, Ilene Smith, who was sitting with her dad. He was talking to the patients mom one room down and said that Ilene's lung functions were low so she had to come. I knew in that moment that she had CF. We started writing notes back and forth that the nurses exchanged. We quickly became best friends and have been hospitalized together almost every visit. She was the first CFer that I actually was able to be around and talk with for more than a few minutes. We talked about everything and none of it was ever awkward. We talked about nurses and respiratory therapists that we didn't like. We talked about life and it's ending. We laughed at each other when we coughed. Due to doctors orders, we are not allowed to be around each other while in the hospital because of cross-contamination. We are able to text, talk via internet, send notes back and forth through nurses, but we can't be around each other. Nothing is the same as actually being face to face with someone who understands everything in your life.

My junior year I started going in the hospital every 3 months. I received my first port-a-cath due to lack of accessible veins for IV's and PICClines because of receiving so many. I have over 20 scars from them. I am now finishing my senior year. I have only attended roughly 35 days of school and it is almost near the end of the last semester. During this year my hospitalizations have of course increased. I have been hospitalized four times in between the months of September 2011 and March 2012. I also had my first sinus surgery which was rough. It resulted in on-going fevers and low 02 sats which required me to wear an oxygen mask for a week. I now need another sinus surgery due to scar tissue from the first one.

On December 2011, I became very ill after attending school for only a week and became the sickest I have ever been. The couch downstairs became my new home for the next week. I wasn't able to doing anything without the help from someone else. Showering was not possible. I had to wash with soap with water. I had 104 fevers on and off everyday.
I slept.
I coughed.
I struggled to breathe every moment.
I remember waking up in the middle of the night and seeing my mom just sitting right by my feet crying. I was really afraid for the first time in my life. I woke up several times in the middle of the night gasping for air and coughing my lungs up. I bawled my eyes out from pure exhaustion and pain.I waited it out until the day after Christmas to go into the hospital. My lung functions dropped to the low 20's and I was on continuous oxygen for a couple weeks. I lost roughly 10 pounds and had to start doing a NG tube, which was a tube inserted into my nose that went down into my stomach, to receive high-calorie enriched supplements through-out the night. I did this for about 5 weeks until I finally had my appetite back and reached a reasonable weight. After about three weeks of being in the hospital my lung functions were back to normal and I was healthier and happier than I have been in months.

On January 31, 2011 the FDA approved a new medication called Kalydeco, the break-through CF drug. This medication is for Cystic Fibrosis patients that have the G511D gene. Only about 4% of CF patients worldwide have the gene, and I was one of the lucky ones. This drug is currently helping my CF gene act more normal by transmitting sodium chloride through my body more properly. It will not fix any damage that has already been done. This has helped peoples weight and lung functions significantly improve in just a matter of months. Today, my lung functions aren't perfect, but they're bare-able. My weight is higher than it has been in years, and overall, I'm feeling great.

Even through reading all of this, it surely doesn't do justice to everything that I have been through. Our life experiences shape us into who we are. The good and the bad. Through-out my life I have been through an enormous amount of pain, struggles, and everyday challenges. Because of all of this, I learned at a very young age that life is short, life is beautiful, and you should never take a breath for granted. I wouldn't take back anything that has happened in my life. Not a single day. Everyone makes mistakes and I have learned to accept mine. I am proud of who I am and not very many people get the chance to say that. I am loving, optimistic, life-changing, grateful.

I am strong. I am so unbelievably strong.

Fight every fight like you can win

Friday, March 30, 2012

Pictures relating to last post

"Short" auto-biography

My very first post.