Dispatches from the Heart

  The names and identifying characteristics of persons referenced in this book have been changed to protect their privacy.

  Published by River Grove Books

  Austin, TX

  www.rivergrovebooks.com

  Copyright ©2018 Ed and Paige Innerarity

  All rights reserved.

  Thank you for purchasing an authorized edition of this book and for complying with copyright law. No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means, electronic, mechanical, photocopying, recording, or otherwise, without written permission from the copyright holder.

  Distributed by River Grove Books

  Design and composition by Greenleaf Book Group

  Cover design by Greenleaf Book Group

  Cover image © Hein Nouwens. Used under license from Shutterstock.com

  Publisher’s Cataloging-in-Publication data is available.

  Print ISBN: 978-1-63299-179-9

  eBook ISBN: 978-1-63299-180-5

  First Edition

  FOREWORD

  This should be pretty straightforward, I thought. About twenty years into my career as a cardiologist, my friend Jim Kemper asked me to see his brother-in-law who had a problem that I have helped patients manage many, many times without significant issues. Modern medicine has made great strides in the last few years, and the treatment of congestive heart failure certainly has not lagged. I had not sent a patient for a transplant in my career.

  Unfortunately, my friend Ed Innerarity broke that streak, followed by another of my longstanding patients shortly thereafter (if any of my patients are reading this, there have been no others; the wheels aren’t falling off ). The idea that he might be transplanted was a fairly distant concern. Sure, when I met him, he had some fairly concerning features with his family history and with his low resting heart function, but I’d seen this before.

  The first six or so years that he was my patient, we mostly did what friends do—we fished, we visited, our families became very close friends. We argued about whether he should climb Half Dome in Yosemite with an ejection fraction of 20 percent and a defibrillator, but I lost (as did his wife, Paige, I think).

  Sometimes, though, when you lose, you win. Rather than call me after he climbed Half Dome, he sent me a picture of him standing on a tongue of granite jutting out into space at the top, with the valley far, far below. That picture is on my desk at home. When I look at it, I am reminded of his indefatigable spirit. You are fortunate to see things like that in life. It helps you know what life can be.

  After a long period of stability, Ed’s status changed, and it became obvious that he would need to be considered for more aggressive treatment, including consideration for heart transplantation. But the more things changed, the more they seemed to stay the same. Ed and Paige have a remarkable relationship, and their courage and fortitude while they waited in Austin was conspicuously normal.

  The day of his transplant, the three of us sat around and talked for a few hours, and most of what we talked about was what we usually talked about—our families, fishing, the day-to-day issues about what was going on with his care. Then Ed asked me, “So, David, what happens if the new heart doesn’t start?”

  The question surprised me. I know how to resuscitate people, just not in that particular circumstance. Rather than warble on about something I don’t have specific expertise in, I quickly answered, “I don’t know, Ed; they always start,” and we moved on. Adding ambiguity to the transplant process at that moment, particularly by discussing the finer points of perioperative cardiac support, wasn’t part of the therapeutic milieu that I envisioned, particularly with a heart on the way. And it didn’t hurt that I had absolute faith in the people doing the operation and the care he was to receive.

  Well, the new heart started. And the story goes on. Ed is eternally grateful to his donor and the family of the donor. All of his family and friends are too. He is the best advertisement for a donor card there could be. He has touched so many people in so many ways and continues to do so. Life with him is an adventure, in no small part because he is like a hybrid of Leonardo da Vinci and Huck Finn, a rare blend of aptitude and moxie. A unique life, with multiple iterations.

  But the best part of the story is the story itself. Ed and Paige’s journey together, their courage and love for each other, the community that we all shared and continue to share. It was, and is, a remarkable experience for so many of us. Someone should write a book about it.

  David Terreson

  Austin, Texas

  PREFACE

  “To live will be an awfully big adventure.”

  —PETER PAN

  Ed, July 2, 2016

  I am one of the lucky ones; I received a heart transplant. That was in the summer of 2015. After ninety-three days of waiting, a matching heart was found, and only hours later, the heart from a donor I currently know nothing about was beating strong in my chest. Almost immediately, my body responded positively. I was breathing on my own within thirty-six hours, my color improved dramatically, and I recall that I could hear a pounding in my ears when I woke from the surgery. It was the strong pulse created by my new heart.

  I sent the emails in this book to my family and friends during my wait for my new heart and for the first year afterward. I consider it a journal of sorts, an outlet of major proportions, for sure—equal parts coping humor, medical observations, and reflections of a life nearly lost and then restored.

  Nearly 3,500 heart transplants take place each year, about two-thirds of those in the United States, so there is nothing new, special, or unique about mine. In fact, it was my observation that the other men and women in my “transplant class” struggled more than I did. From my perspective, their stories were often more compelling than mine. Many of the others in my transplant class received an LVAD (left heart ventricular assist device, or heart mate) because they could not wait for a donated heart or they did not qualify. The LVAD might be a temporary bridge to a heart transplant or might be a “destination,” meaning it was with them to the end. Others may have had heart attacks, multiple bypasses, or the failure of other organs at the same time they were in heart failure. Some days the clinic was littered with wheelchairs, oxygen bottles, and desperate patients. Many could not even walk across the room. The best hope for those with LVADs as a bridge was that after a minimum of six months off the transplant list, they might get a matching heart and have major surgery again. Others were often on a second heart mate with a host of related problems.

  The difference, if any, was that I saw firsthand how my family and friends supported me, hurt for me, and did everything humanly possible to intervene for me. And possibly for the first time in my life, I watched as others helped me. The heart transplant, and all that led up to it, was the biggest challenge of my life, and it was also the greatest adventure I have ever gone through. A second chance and a new life. I wanted to be a good steward of my new heart, for sure, but also to live every minute of my new life.

  This second chance at life has led me to an opened gate and only a hint of a road going through it, very much like the picture that follows. There are no guarantees where the road will lead; in fact, the road itself is likely to get worse the farther we go. The clouds on the mountains in the background portend potential weather problems, too. Much like life itself, the future is unknown. But through that gate is life and lots of it. Maybe sunshine, maybe rain. Problems, likely. Adventure, for sure.

  I am going through that gate. Who is with me?

  Live well,

  Ed

  Paige, July 25, 2016

  “We must find time to stop and thank the people

  who make a difference in our lives.�
�

  —JOHN F. KENNEDY

  Life is a mystery that has birth and death as bookends. The middle part, all the stories that compose existence on this earth, are written with each breath drawn, each heartbeat, and each thought, emotion, and experience. What a wonder this life is! Opportunities and possibilities present each day as consciousness stirs.

  This is a glimpse into part of Ed’s story. It is imperfect, incomplete, and open-ended. Our hope and prayer is that the experiences and thoughts that are shared will be useful.

  There are no warranties or guarantees with a new organ. Other families, other friends have lost precious loved ones in the past year as Ed has continued to survive and have a new life, a new story, thanks to his donor and the donor’s family. As we are brought to our knees with joy and gratitude, we are mindful of the grief and loss of others. We weep with them and for them. There is so much sorrow mixed with hope in the transplant story.

  No one knows what will happen between the bookends. There is no certainty in tomorrow. Ed’s heart is beating today. Now is a gift of unfathomable beauty, sacrifice, and love.

  Treasure each day.

  Donate Life.

  Love and Grace,

  Paige Kemper Innerarity

  INTRODUCTION

  “Life isn’t about waiting for the storm to pass . . .

  It’s about learning to dance in the rain.”

  —VIVIAN GREENE

  Ed

  My troubles began on June 14, 2014. Oh, I had known for eight years that I had cardiomyopathy, but the first card of the final hand was dealt that summer day in Colorado.

  As was often the case at this time of year, I had my drift boat on the Rio Grande, floating through some of the most beautiful and productive fly-fishing water in the state. The river was still big from the spring runoff, and had I not had a friend in town, I might have waited until the water was down another 1,000 CFS (cubic feet per second) before taking on an eight-mile stretch strewn with foaming rapids and boulders just coming out of hibernation. And besides, I had taken this boat through worse water than this. Just not with a reduced heart function.

  Ironically, it was not my heart that was injured that day. Some nerve in my foot, ankle, or leg got overworked as I pushed hard on the foot pegs and pulled hard on the oars to dodge trouble on the Rio Grande. For the next two months, I had limited feeling in that foot and a charley horse in my calf that prevented my cardio workouts that were somehow allowing me to compensate for my heart pumping half the blood it should have.

  Cardiomyopathy: Chronic disease of the heart muscle. The heart muscle becomes enlarged, thick, or rigid. As the heart enlarges, it becomes increasingly weaker and unable to pump the blood through the body and maintain a normal heart rhythm. This leads to congestive heart failure.

  I got my foot checked out and was told it would take a while for that nerve to regenerate and I would just have to limit my workouts so as not to make Mr. Nerve any madder than he already was. My end-of-summer checkup with my good friend, fellow fly fisherman, and cardiologist, David Terreson, was not as encouraging. I had lost enough conditioning that I had to postpone my September stress test. I was not at all surprised. A couple of weeks before each stress test, I would simulate the Bruce Protocol Stress Test, which I had downloaded from the Internet, on the treadmill at the YMCA. This time I knew I would not do well.

  A normal and healthy heart displaces about 55 percent of the blood in the heart chambers and sends it on its way to the lungs and the rest of the body. This is called the ejection fraction, or EF. Shortly after my mother died of congestive heart failure, I got tested as part of an insurance physical. It was then I was first told I had a subnormal EF, the first sign of cardiomyopathy. Having a reduced heart output is like trying to see with half as much light or trying to hear with only half the sound reaching your ear. How well would your car run if only four cylinders of your car’s engine were working? I was referred to a cardiologist, Dr. Terreson.

  That was in 2006, and my EF was already in the low 40 percent range, but to the doctors’ surprise, I was able to function completely. I skied at 11,000 feet; our place in Colorado was at 8,800 feet. I carried my clubs when I played golf, and I had no problem with my cardio workouts. In fact, my first few stress tests were far better than most folks half my age with no heart problems. All of my years of trying to stay fit were allowing me to compensate for my reduced heart function. But regardless of how much I compensated through fitness, there was only so much good it could do.

  I was told that with medications and my lifestyle, I might live many more years, but there are no “get out of jail free” cards for cardiomyopathy. The medical statistics say that 15 percent to 20 percent die within one year and another twenty-five percent to 35 percent die within five years.

  I was told that this is what I would die of.

  At the time, I was fifty-five years old and stood just a hair over six feet tall. I weighed 169 pounds and worked out every day that I didn’t play golf, hike, or go to the river. And because of some gene on my mother’s side of the family, I was going to die of congestive heart failure. I was careful about what I ate, I was careful about my weight, I did not smoke or drink. But because of some gene, I was going to die. And die ugly.

  Sitting with Dr. Terreson in his office, all I could think about was the last six months of my mother’s life, or more accurately, the way my mother died for six months. Her hands, legs, and face would swell as she retained fluid. She had no energy, and her skin turned dusky and cold. Her appetite declined and she lost weight. Her voice was weak and raspy. She could hardly walk across the room, even with help. Her eyes were empty save only for the fear and desperation she could not hide. She told me how ready she was to step off that cliff if only she could.

  I watched as she suffocated to death because no amount of diuretics and no amount of dobutamine could help keep her lungs from filling with fluid. For sure, hospice staff did a great job trying to make her passing better than it might have been. Less than a year after watching what congestive heart failure looks like wearing my mother’s bathrobe, I learned that a bathrobe just like hers had my initials on it.

  COUNT YOUR BLESSINGS

  In the first few years after World War II, America was tormented and terrorized by polio, aka poliomyelitis, aka infantile paralysis. During this time, the West Texas town of San Angelo reported 420 new cases and twenty-eight polio-related deaths in one year, the highest per capita rate in the country.

  In Texas, new cases of polio peaked in 1954, the year the vaccine produced by Jonas Salk was first tested across the country. By August 1955, more than four million Americans had received the polio shot. In my hometown of Midland, a couple of hours northwest of San Angelo, the local paper reported on September 9, 1955, that “the first small shipment of commercial polio vaccine, enough to immunize approximately 100 children, reached Midland this week.” The article went on to quote Dr. Dorothy Wyvell, president of the Midland Pediatric Society: “The Midland Pediatric Society anticipates a larger shipment of the serum within the next few months, enough to protect all children by next summer.”

  Unfortunately for my family, I contracted bulbar polio in October 1955, just before the larger batch of vaccine was due to arrive. It was two weeks short of my fourth birthday. On October 11, 1955, the Midland Reporter-Telegram ran a short article, “Two More Midland Children Have Polio; bringing the year’s total to 29.” The two children were a six-year-old girl named Sandra Duncan and me.

  It has taken me many years to realize that my biggest challenges were actually blessings. Having polio as a child was one of them.

  My earliest childhood memories were of my bedroom, cleaned out and appearing more like a hospital room. I had a small clinical-type bed, a couple of chairs, and a small stainless-steel table where my injections, spinal tap, blood transfusions, and IV feeding lines were prepared. The same nurse asked me the same question each day: “Ed, what do you want for lunch today?” I always said I
wanted a hamburger.

  Dr. Wyvell, my pediatrician, would become one of the most influential persons in my life as I got older. I studied economics because of her. After she passed away, I was able to get the original of my medical chart. It noted that I weighed thirty-seven pounds when I got sick, that I had trouble breathing and drooled because I could not swallow. I had lost sensation in my legs and could not move my arms if they were above my head. From my sister I learned that I was not placed in an iron lung because, at my age, my doctor thought the experience would likely be too much for me. So Dr. Wyvell gave me gamma globulin shots made from donated blood plasma to temporarily boost my immune system and prayed for me. I survived. And eventually, I prospered.

  The March of Dimes did an unbelievable job raising money and awareness in a warlike effort to defeat polio. Few things tugged at the hearts of postwar Americans more than pictures of young boys and girls in iron lungs or braces, or lying helpless in a hospital. But to be completely honest, many people became infected with polio, felt bad for a few days, and got over it—probably more than 80 percent.

  Roosevelt had died barely ten years before, and the images of him in a wheelchair and the posters of pretty young girls in braces were too much for my mother. “My son will not be a cripple,” she said more than just a few times. After a few weeks to regain my strength, I was enrolled in tumbling class and was expected to tumble better than the others, which I soon did. “If the seven-year-old boy will walk on his hands, you will too.” And I did. “If the eight-year-old boy can learn a back handspring, you will too.” And I did. “If the other boy can do a flip on the trampoline, you will too.” You will too. You will too.

  The things parents say to young children often leave a disproportionately large and permanent mark in the wet cement of that child’s life. Looking back, that I survived probably was not the miracle I was told it was. At its worst, in the mid-1950s, polio took three thousand lives in one year, while tuberculosis killed thirty-four thousand people a year at about the same time and influenza caused more than sixty-five thousand yearly deaths. Maybe we should have been looking just as hard at finding a cure for TB and the flu.