Levin Chynna Bracha - Every breath I take: surviving and thriving with cystic fibrosis

.

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

.

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 Childrens 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 Childrens Hospital; Claires 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

.

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. Im 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 dont really help explain what its like to live with cystic fibrosis. Im not sure if I can do much better, but Id like to give it a shot. Ill try to talk about things as simply as possible, but thats one of the first things to learn about living with CFnothing is ever really simple.

Cystic FibrosisThe 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 doesnt mean that they have the disease; just that the defective gene that causes it is in their DNA. CF isnt always detected when youre 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 cant digest food, or it can fill your stomach with mucus, making you constantly nauseous. When youre diagnosed with CF, you learn you have a specific typemine 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 dont 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 dont work.

Thats the big concern with CFmucus drawing infections, pockets and scar tissue forming, and organs shutting downbut the basic pattern can affect a persons body in many different waysways 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 IsolationThe 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 cant always be cured, and sometimes the treatment can be very difficult, but there is something that can be done to help fight it. That isnt 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.