Schad Karyn - The taste of air: LAM, a love story

The Taste
Of
Air

LAM: A Love Story

Richard Schad

iUniverse, Inc.

Bloomington

THE TASTE OF AIR

LAM: A LOVE STORY

Copyright 2012 by Richard Schad.

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews.

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ISBN: 978-1-4759-6023-5 (sc)

ISBN: 978-1-4759-6024-2 (ebk)

Library of Congress Control Number: 2012921586

Printed in the United States of America

iUniverse rev. date: 11/26/2012

Contents

Mary Had a Little Lamb,
My Lam Not So Little

Nails On The Chalkboard
Of My Soul

ICUIntensive Care for
Those of Us Waiting

Leaving Hospital,
Friday June 5t h Tag Youre It

Friday June 5t h D Day,
The Longest Day, A Day Later

Caregivers, I Am Her Lifeline
and She is Mine

IT TAKES A LOT OF PATIENCE
TO LEARN PATIENCE

A Survivor By Any Other
Name, So Far

Airhead, Things
Better Left Unsaid

Heroes No Longer Fly
Through the Air

The Abbreviation of
Genuine is Gene

All author proceeds from the sale of The Taste of Air go to the LAM Foundation
For further information on LAM or to make a donation, contact
www.thelamfoundation.org

For Karyn, my bashert

I fought with my demons to relive the painful parts of my wifes chronic and potentially life-threatening lung disease. There are so many memories, some ugly, some sweet, and so many bittersweet and all subject to some secret whim when they surface. The past is always your past, yours, even when you try to forget it, the past remembers you. So I take pen to paper to honor the memories, and hope to let them go. Its all I can do.

My hope is that the family of a transplant donor will read this book and find it in their heart of hearts to contact the recipient of their loved ones gift of life, to feel the breathing of their loved ones lungs.

I wish is that a wife suffering from LAM or another suffering from lung disease or cancer will give this book to her husband. She will say, Honey I think you need to read this book. He will take the book and read it, and after reading the Taste of Air will tell her that the book helped him and he discovered much about himself. I know I did.

Every husband should write the story of his wife. From writing, I appreciate so much more about my wife, and my respect and love have increased tenfold. My wife suffered nearly a total eclipse of her air, but she is here and I am here, and today is much to celebrate. Today, my wifes arms wrap around me like a promise, and that despite everything, all will be well.

May this book in some ways be like when I was little and my mom would rub my back in slow strong circles, and say it would all be okay.

The journey of a chronic disease can be a very dark place, and both caregiver and patient need a candle sometimes. I hope you find yours.

To all who suffer, peace.

To Saul Skolnick and Alice Rydeen, both of blessed memory, teachers at Lynwood High School who turned on the switch

To Sue Byrnes, and Fran Byrnes, he of Blessed Memory, founders of the LAM Foundation, who provided the searchlight at the beginning of the Tunnel, cutting through the fog of LAM

To all the surgeons and doctors and nurses and staff at DUKE Medical Center and the DUKE Center for Living. In the beginning there was darkness and you separated the dark from the light and brought unto us the Lamp of Life

To Charlie Levi, who lighted my load, and corrected my multiple errors of tenses, commas, and pronouns. Any errors remaining are the authors own

To Jake, my special Delta Pet Partner therapy dog, of Blessed Memory, whose warm glow brought forth the light of the Sun to all he graced

To our Donor, of Blessed Memory, who brought forth light unto all the nations of our souls. We shall meet when our lives are complete.

Both Sides

I am sitting in the ICU but I cannot see you. Sitting in the waiting room, I straighten my back, and thrust out my chest. I am the bold knight just returned from the Crusades to rescue his fair maiden in oft yonder ICU.

A nurse came through the gates of the Castle Keep, the closed double doors of the Intensive Care lung unit at Duke Medical Center, and jubilantly told my sister, Pam, and me, that my wife, Karyn, would be removed from her ventilator shortly, and that she would be back to get both of us in 15 minutes. The nurse would lead us oft to Camelot, to rescue my fair maiden from the tower.

Could it only have been less than two days ago, that my wife received the miracle of life, a double lung transplant from a perfect stranger? What could be more perfect than a person giving you your second chance at life? Like a newborn baby, my wife had received the breath of life, and was newly born.

Fifteen minutes. A moment in time, one of those moments, like JFK or 9/11, I will always remember where I was.

And I am glad I am here. Yesterday I was home in Colorado, taking my first break as primary caregiver, taking care of the house and work. Last night, Karyn was called to the hospital as the primary recipient. I gathered our family at home as we all waited and waited and waited. After twelve hours, my sister Pam, my back-up caregiver, called and said the lungs were no-good, a dry-run and they were going back to the Residence Inn for some much-needed sleep. Early in the morning, before the sun could yawn, the phone rang, and Karyn said she was being called back again to the hospital, but this time Karyn was the secondary back-up. Dont call the family, I am just the back-up so it probably wont happen. At around 9:00 AM Colorado time, my cell-phone rang, and I answered it, saying, You and Pam are going back to the hotel to lounge around the pool? No, a-jumping-out-of-the-phone, Karyn giggled, Theyre wheeling me into surgery right now, its a go. I could feel her smile in my heart.

I ran around chasing my tail, shaved, showered, packed, and within two hours, I was on a Delta plane heading back to the Promised Land.

The miracle of Karyn, breathing on her own, on room air. Karyn, my wife of 37 years, the love of my life, enjoying her new lungs. Has it been 9 years on supplemental oxygen? Three years waiting for a transplant? I can wait fifteen minutes.

Karyn had been through a nine-hour cakewalk surgery. I almost made it to North Carolina before she was out of surgery. A cakewalk? More like getting run over by a freight train. Make that two freight trains. The nurse had said, No complications, all signs good. What must it feel like to take a breath, to really breathe, and feel the warmth of your own breath? No tubes in the nose. No cords to get tangled in. No more tanks to fill, and lug around. No more dry nose. I could not wait. God, hurry up those 15 minutes. Your crusader has been waiting for this day for so many years.

I looked over at the wall separating the waiting room from the cubicles of ICU, and imagined I could see through the walls like a super hero, see Karyn on the other side of the wall, and then through her, through her skin, her new lungs, and into my heart. God, I love her more than oxygen. ICU when I breathe. ICU wherever I go. I want to see you. Fifteen minutes.