Every Breath I Take

by Chynna Levin

  Copyright © 2012 Claire Wineland and Chynna Bracha Levin

  All rights reserved. No part of this book may be used or reproduced in any manner whatsoever without prior written consent of the publisher except in the case of brief quotations embodied in critical articles and reviews. Special book excerpts or customized printings can be created to fit specific needs.

  Business Ghost Books

  www.businessghost.com

  ISBN: 978-0-9836406-7-7

  eBook ISBN: 978-1-62346-882-8

  Cover Design: Leo Cadiz

  Book Design: Dotti Albertine

  This book is dedicated to Vanessa.

  She was my first friend with cystic fibrosis.

  She passed away in 2008 yet

  I still think of her all the time.

  She was a brave fighter!

  –Claire–

  For my mother, Suzanne Levin,

  who has given me love my whole life,

  and for my grandmother, Jenny Graubart,

  now celebrating two generations of dedications.

  –Chynna–

  contents

  acknowledgments

  Chapter 1 growing up as a CF kid

  Chapter 2 the surgery

  Chapter 3 the coma

  Chapter 4 the aftermath

  Chapter 5 the foundation

  Chapter 6 life goes on

  support families

  acknowledgments

  i would like to acknowledge my teachers; my friends who are there for me whenever I need them; and my family, always there for love and support. I would like to acknowledge Claire Wineland for her courage and openness and for giving me all the information that we put into this book. Special thanks to my father, Michael Levin, for helping make this book a reality. Thank you to my brothers Walter and Isaac and my sister Aliya for all your love.

  —Chynna Levin

  my gratitude goes to Miller Children’s Hospital/Memorial Care Long Beach, CA; Drs. Nussbaum and Randhawa; the pediatric ICU doctors; and all the excellent caregivers in the Cystic Fibrosis Clinic at Miller Children’s Hospital; Claire’s Place Foundation and all the people who support us in this endeavor to help others surviving and thriving with cystic fibrosis.

  —Claire Wineland

  we both wish to acknowledge Meghan Heritage, who made this book a reality; the beautiful interior design and layout by Dotti Albertine of Albertine Book Design; and Leo Cadiz, who created our awesome cover design!

  —Chynna and Claire

  Chapter 1

  growing up as a CF kid

  “Cystic fibrosis (also known as CF or mucoviscidosis) is an autosomal recessive genetic disorder affecting most critically the lungs, and also the pancreas, liver, and intestine. It is characterized by abnormal transport of chloride and sodium across an epithelium, leading to thick, viscous secretions.”

  —Wikipedia Definition

  the definition above seems like a lot of big words for something that has been a part of my life since I was born. I’m a CF kid, and the disease has been a large piece of shaping who I am, especially over the last two years, but all the long medical terms don’t really help explain what it’s like to live with cystic fibrosis. I’m not sure if I can do much better, but I’d like to give it a shot. I’ll try to talk about things as simply as possible, but that’s one of the first things to learn about living with CF—nothing is ever really simple.

  Cystic Fibrosis—The Medical Facts

  cystic fibrosis is a genetic disease, so both of my parents had to be carriers in order for me to be born with it. That doesn’t mean that they have the disease; just that the defective gene that causes it is in their DNA. CF isn’t always detected when you’re first born. In fact, a lot of CF kids are misdiagnosed with things like asthma or stomach disorders before doctors can catch the CF. However, I was born with a meconium ileus, which is a giant cyst in my stomach, so it was obvious right away that my life was going to be very different from what most kids would consider “normal.”

  Cystic fibrosis is also a progressive disease, which means it gets worse as time goes by. Basically, what happens is that the disorder causes a sodium deficiency in your body that then causes an overload of mucus that builds up in your lungs, sinuses, stomach, pancreas, and pretty much anywhere else mucus might gather.

  Over time the mucus starts to gather everywhere and can cause different problems for different organs. In the pancreas it prevents insulin from being released, which gives you Type One diabetes, or CF related diabetes. It can also prevent your pancreas from releasing enzymes so you can’t digest food, or it can fill your stomach with mucus, making you constantly nauseous. When you’re diagnosed with CF, you learn you have a specific type—mine is Delta F508 Delete, which is another really long word that basically means my CF affects both my lungs and gastro-intestinal system.

  No matter what variation of cystic fibrosis you have, infections, viruses, and bacteria are eventually drawn to all of the built up mucus, and they don’t want to leave because the mucus forms little pockets around itself. Your body tries to isolate those pockets by surrounding them with other pockets in the airways, but those pockets just trap more mucus, more bacteria arrives, and the whole process starts over again. Eventually the pockets will start to fill up with scar tissue, which starts to clamp off parts of the lungs. Right now, my upper right lobe and lower left lobe are closed off and pretty much don’t work.

  That’s the big concern with CF—mucus drawing infections, pockets and scar tissue forming, and organs shutting down—but the basic pattern can affect a person’s body in many different ways—ways you would never think would be related to CF. For example, very few women suffering from CF can have children because the mucus can affect your ovaries. Ultimately, cystic fibrosis is a disease that tests you in so many unusual ways, and not all of them are physical.

  Living Together in Isolation—The CF Community

  although the physical effects of the disease can be tough, having cystic fibrosis is so much more than just dealing with nausea and breathing difficulties. I recently heard someone ask if living with cystic fibrosis was like living with cancer, since both diseases are seen as a death sentence in many cases. However, there are some big differences between the two. First, there is a treatment for cancer. Obviously, it can’t always be cured, and sometimes the treatment can be very difficult, but there is something that can be done to help fight it. That isn’t the case with CF. Moreover, unlike with cancer, a person is born with CF. While some children may be diagnosed with cancer early in their lives, CF is with you from the moment you are born. You grow up with it and are stuck with it until they find a cure.

  The most important difference, though, is that people with cancer can be together.

  With a lot of illnesses, it’s easy enough to find a community of people who all suffer from it, so at least you have someone to talk to about what you’re going through, but CFers can’t be together. They just can’t. Every day, a normal person comes in contact with all kinds of staff infections, bacteria, and viruses, but their bodies fight off the invaders. With CF, on the other hand, the mucus draws those things in, and CFers can’t fight them off.

  Because of this, people with cystic fibrosis can’t be together. We literally make each other sick. In fact, there used to be CF camps where kids with the disease could go and spend time together, but the government shut them down when doctors figured out that the campers were passing bacteria between themselves, which was making them all sick. Obviously, with all the communication advancements, like the internet, CF kids can now meet and talk without actually coming into contact with each other, but it’s still very isolating.

  Even though ther
e are counselors to help you deal with living with CF, when you can’t actually be with other people who can relate to you, it is really difficult. That sense of isolation runs throughout the CF community, and there have even been many novels written about it, especially romance. It’s like the ultimate Romeo and Juliet—you can never date or be together because you will only bring harm to the one you love. Even if you are the most positive and happy person, the kind of person who never lets life get you down, it can be very lonely sometimes.

  Because they don’t have anyone to relate to, no outlet or communication, many CF kids just give up, and there are a lot of suicides in the CF community. Earlier I talked about the CF camps that were shut down, but now there are actually secret CF camps where some kids go because they just don’t care about getting sick. They figure they are going to die anyway, so why not meet with other kids like them.

  I think that kind of attitude is the hardest thing for me to deal with because I have fought so hard to stay alive, as have many other CF kids that I’ve talked with over the internet. We have all fought to get where we are and place such a high value on the lives we have created. I don’t know one CFer who doesn’t feel the same way—even the kids who are depressed and the ones who take their own lives know how valuable it is.

  Because when you have CF, you’re never sure how long that life is going to last.

  The Hospital—Home Away from Home

  a lot of people seem to think that one of the biggest trials of having CF is the large amount of time a CF kid has to spend in the hospital. I can’t speak for other CFers, but because I have spent so much time there, the hospital feels like a second home to me. Sure, I miss having my freedom and being able to go out, but spending so much time in the hospital has never really been an issue.

  It’s funny, because I’ve always been extremely comfortable in the hospital. It’s my home away from home, and I feel very safe there—it’s the way I’ve grown up. All of my early memories are of the hospital, but not all of them are of things like procedures and surgeries. Those are certainly a big part of it, but I also remember doing projects with the nurses, having New Year’s Eve parties in my room, and spending time with the food service staff cooking in the kitchen.

  It’s a little embarrassing sometimes to admit all of that when people ask me about it, because the response is always, “Really? The hospital?” But in the end I can’t really care about what people think. This is my life, and the hospital is my home.

  Born This Way—The Reality of Living with CF

  the one question that CF kids always seem to get asked is, “What does it feel like?” People want to know if it feels like I’m suffocating, or if I resent other kids for being able to take a deep breath. The truth is, it doesn’t feel weird… to me. That’s because this is something I’ve lived with my entire life, and I have no way of knowing what it’s like to take a real breath or not have my lungs be partially clamped off.

  While I can’t speak for all CF kids, I know that most I’ve talked to feel the same way. We simply don’t know what we’re missing. There are definitely times when I know I’m feeling something different from what most kids would experience, but instead of being jealous that I can’t take a normal breath, I’m actually more curious.

  When I was younger and my health was still good enough that I could go to school, every week we would have to run a mile—four laps around the track—in gym class. My teachers knew I had cystic fibrosis, so I didn’t have to do the full distance, but I would always try my best to do what I could. Some days I was able to run three laps, others I could only make it around the track twice. Rarely did I make it the whole mile. However, I would see the kids who did run the full mile, and they wouldn’t even be that short of breath. Meanwhile, I’d be gasping by the second lap.

  I wasn’t necessarily envious of the other kids as much as I was curious. I have no clue how that feels; to run that distance and not be short of breath is alien to me. For me, it’s the things most people would consider “normal” for a teenager that seem the strangest. People assume I must resent not being able to do a lot of the things most teenagers do, but the truth is that I can’t imagine what life would be like if I didn’t have to get home at a certain time in order to do treatments.

  When others ask me if I want to go to see a movie or go to a sleepover, I have to tell them that, physically, I just can’t do it because I have things like oxygen tanks that I need to get home and charge. For me, “normal” is dealing with the limitations of my CF on a daily basis, only they don’t really feel like limitations because I don’t know any other kind of life.

  When I tell people this, their reaction is almost always, “Wow, that must be awful.” But it isn’t awful; it’s just strange. For most teenagers, not getting home on time may land them in trouble, but it’s certainly not a life or death issue. For me, it is.

  Although most CFers don’t know what they’re missing, many of us can start to understand that feeling of envy as we grow older. Cystic fibrosis is progressive, so as a CF kid grows up, a lot of times he or she might remember when they were younger and their CF wasn’t so bad. As I look back on my childhood, I realize I was a lot healthier when I was seven-years-old than I am now. When you’re younger you don’t really know what it’s like to miss out because you’ve only had a couple of experiences, but once you get older and start to look back on being younger and healthier, you start to understand that kind of jealousy.

  Luckily, some things are starting to change with CF. There still isn’t any cure, but the life expectancy of CF kids has increased dramatically even since I was born. Most people diagnosed with CF used to only live until their twenties, with maybe a few bed-ridden thirty-year-olds in the community. Now, however, people with CF are living into their fifties due to advancements in medical research. Still, there is a lot of uncertainty with this disease.

  To be honest, however, for much of my life having CF wasn’t a big issue. I went to school. I spent time with friends. I didn’t look sick. I was as close to “normal” as I could get. Despite having to go through several surgeries and treatments, I had never really felt like the stereotypical CF kid.

  Then two years ago something happened that dramatically changed my life.

  Chapter 2

  the surgery

  although I had been living with cystic fibrosis all my life, for most of that time it hadn’t really impacted me in any drastic way—I was never the “sick kid.” That changed two years ago when I was scheduled to undergo surgery—a fundoplication that would tie off part of my stomach so that I wouldn’t have problems with acid reflux. I’d been through the procedure before and, for the first time ever, didn’t feel any fear over going into surgery.

  My doctor, Dr. Mathis, was one of the best fundoplication doctors in the country and was even planning on doing the surgery laproscopically, so they wouldn’t have to cut me open. After a day of recovery, I would be going home. Unfortunately, that’s not what ended up happening.

  Normally I am very tuned in to how my body feels, and I absolutely hate any kinds of drugs or other things that make me feel loopy or out of it, but on the day of the surgery I was given some “mellow drugs”, probably a small dose of morphine and something else, in order to calm me down, even though I didn’t really feel like I needed it. After all, I was already pretty calm about the procedure. Because I was given the drugs, though, much of the day is a blur.

  One thing I do remember, however, was both of my parents saying they had a funny feeling about the surgery. Although I was a little out of it from the drugs, I reassured them that everything would be fine. I’d been through the procedure before, we had a great doctor, and the surgery was being done laproscopically. I was certain things would go smoothly.

  Looking back on that day, I realize there were so many small signs telling us not to go through with the surgery. Not only did my parents have a bad feeling, but an hour before my procedure was scheduled to start Dr. Mathis was called in
to an emergency surgery and another doctor was brought in to replace him. Although my parents wanted to call off my surgery, I reassured them again. I was used to working with a lot of different doctors, and I knew my replacement surgeon had a good reputation.

  So I went through with the surgery, and everything seemed to go well. I woke up and felt fine, but I quickly realized that the surgery had not been done laproscopically. Learning that there had been a change of plans just before my procedure, I found I had stitches and a five inch incision on my stomach. Despite the minor hitch, everything else seemed to have gone smoothly. Although some of the stitches came undone—which should have been a warning sign for us that there was swelling—we were assured that it was all okay. At this point I was so used to surgeries and these kinds of small things going wrong that I didn’t even think twice about it. I just figured everything would heal.

  The only thing that bothered me was that I had a fever coming out of surgery, and since fevers are normally a sign of infection I was a little concerned. However, my dad told me that everything had gone well, so I figured it would all be fine.

  Unfortunately, things didn’t turn out fine. Over the next two days my oxygen saturation level continued to go steadily downhill. I was tired all the time—more tired than usual—and I couldn’t cough. That was a big concern for me since coughing is how I clear mucus; it’s how I stay afloat. However, it wasn’t so drastic that we thought something might be seriously wrong, and since no one else seemed especially alarmed, I figured it was all normal.

  There was another reason I wasn’t too concerned about my downhill turn. During the build-up to the surgery, my doctors had told me that I would have to choose between living with my mom or my dad. Up to that point I had been going back and forth between them, but it had started to get too confusing with all of my medication and treatments. We were starting to have trouble keeping track of which prescriptions had been filled and who was taking me to doctors’ appointment. I knew the doctors were right, but it still didn’t make the choice any easier.