Living Without a Pulse

By Stuart Swanson

I have no pulse and no blood pressure; my pupils are even fixed and dilated. Somehow, Im alive. After years of battle with a failing heart, an implanted pump called a Ventricular Assist Device (VAD) keeps me going. It masks my natural pulse with a constant flow of blood. (As for the fixed and dilated pupils, as I sometimes have to tell doctors, Im neither stoned nor dead: I just have bad eyes.)
The sad fact is, heart failure claims the lives of hundreds of thousands of Americans each year. Only around 2,500 receive heart transplants. VADs are the latest and greatest medical miracle for treating end-stage heart failure. For some, they can serve as a bridge to transplant. For others they form a destination therapythis is a nice euphemism for saying youre at the end of the road. Even destination therapy gives hope to thousands of people each year who would otherwise be sent home to die.
My journey didnt begin with a VAD, and (I hope!) it wont end with one either. As Albert Einstein once said, It has become appallingly obvious that our technology exceeds our humanity. Though he was probably referring to nuclear weapons, his statement applies equally well to todays medical miracles. While I am truly thankful for the life the medical community has given me, I would like to offer them a glimpse of the human impact of their devices and treatments on the patient.
My illness caught me unprepared and nave. As more people are being kept alive with ever more elaborate treatments, my hope is that my story will prepare and inform others for the long road ahead of them.
I encourage you to read this book for the happiness, sadness, and comedy within it. May it help prepare you for your future and give you encouragement through the dark times ahead!

• Language: English
• Publisher: Xlibris US
• Release date: Nov 14, 2011
• ISBN: 9781465395085

Book preview

Living without a Pulse

Stuart Swanson

Copyright © 2011 by Stuart Swanson.

Library of Congress Control Number:       2011960372

ISBN:         Hardcover                               978-1-4653-9507-8

                   Softcover                                 978-1-4653-9506-1

                   Ebook                                      978-1-4653-9508-5

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

This book was printed in the United States of America.

To order additional copies of this book, contact:

Xlibris Corporation

1-888-795-4274

www.Xlibris.com

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108173

Contents

Prologue

Chapter 1 The Living And The Dead

Chapter 2 Medications And Electricity

Chapter 3 More Hope

Chapter 4 Rochester

Chapter 5 The Train

Chapter 6 Living With An Lvad

Chapter 7 The Financial Experience

Chapter 8 Our Responsibility

Chapter 9 The Future Of Healthcare

Chapter 10 Waiting

Chapter 11 Last Words

PROLOGUE

WE BASICALLY STUMBLE through life with little thought for tomorrow. We don’t appreciate our families enough. We argue over nonsense. We give too little and take too much.

I’m not somebody famous, nor have I ever written a book before. At age 44, I was diagnosed with idiopathic dilated cardiomyopathy—in laymen’s terms, an enlarged heart without a clear cause. This diagnosis marked the beginning of a decade-long battle to stay alive. I’ve been hospitalized a dozen times over and have undergone numerous surgeries. Today, two implanted devices keep me alive: an internal pump and a pacemaker/defibrillator. Sometimes I think my chest x-ray shows more metal than bone. The internal pump runs constantly and masks my pulse, making it virtually undetectable without special equipment. Hopefully these devices will last until I get a heart transplant.

As medical wizardry keeps us alive longer, more people are sharing my experiences. The heart simply wears out after a time. Those who, in the past, would have died of other illnesses are now living long enough to be afflicted with heart failure. According to the CDC, heart disease is the #1 cause of death in the United States today.

If we’re honest with ourselves, years of hospitalization and chronic disease are in most of our futures. Billy Graham once said, I had been taught all of my life how to die, but no one had ever taught me how to grow old. I hope this brief account of my own journey can do three things: to those who are just facing a long-term illness, I hope it can guide you through dark times; to those who haven’t yet faced a serious illness, I hope it prepares you for the future; and to those in the medical community who care for us, I hope it gives you a glimpse of what it’s like to be on the other side of the scalpel.

I look forward to sharing my story, which still isn’t over. It contains some humor, revelations, and deep emotion. In all of this, I have been humbled by the way in which God has used many people to help my family and I to continue this battle.

The most powerful experience I’ve had in writing this book was when my wife read the last chapter. She cried—and so will you when you see how bad it is!

CHAPTER 1

The Living and the Dead

ON A BEAUTIFUL September evening in 1978, my father Warren was leading a group of 50 people in singing songs at a church camp. After my dad led the last song, Open My Eyes Lord, I Want to See Jesus, he smiled, waved his hands at the group and said good night. He then collapsed and died. It was like somebody walked up to him and turned off the switch. Attempts to resuscitate him were not successful. He was 45 years old and had never been in the hospital in his life. Earlier that day, he told a friend and me he had never felt so good. A month before, he had a stress test for an insurance policy and was pronounced just fine.

I was the only one of his children at the camp. At age 19, I helped the camp nurse perform CPR on him before an ambulance arrived. The doctor at the emergency room ruled his death was caused by ventricular fibrillation. No defibrillator was present at the camp, since this was many years ago. If this had happened thirty years later, he might have lived.

With three children still at home, my mom Fern had more than she could handle. I was the oldest and took over the family garbage business. My greatest concern over the next few months was that the rest of the family be tested for heart troubles. We were pronounced healthy.

My mom, my siblings, and I continued with our lives for many years with no heart problems. We survived physically and financially, and we eventually got over the shock of losing my dad so suddenly. Our focus shifted to living our own lives with college, jobs, marriage, and children of our own. My brother Gordy became a great attorney, my sister Cate became a registered nurse, and my other sister Maggie became … hilarious. We’ve produced ten grandchildren for my mom and they are now almost all grown. Our hair has started to turn grey. Health became a concern as we approached and exceeded the age of my dad at his death. Overall, our health issues have been quite benign—except in my case.

I worked very hard physically all my life and had few, if any, medical problems. I was raised on the farm which involved lots of physical labor, and at the time of my dad’s death I was working for a construction company. The garbage business I took over was making no money, but with a lot of hard work we turned it into a profitable business. My life at that time consisted of trash pickups, truck repair, building a shed to house our equipment, and my construction job on the side.

After two years I bought out my mom, sold the business, and began to work my way through college. I met my magnificent wife Donna at a Bible study and marriage ensued. She is a registered nurse and was working in the ER when I met her. Between working construction, taking a full load in school, commuting over a hundred miles each day, buying a house, taking a wife, and having a child on the way, I decided to drop out. A chemical sales job became available, and I’ve sold chemicals for the remainder of my working life.

Along came two boys. What a blessing: Mike and Josh in diapers at the same time! Between the two of our jobs, we had plenty of money. With my job, I won lots of trips around the world over the next 15 years. We had the privilege of going to London, Warsaw, Maui, Cabo, Puerto Rico, Quebec, the Bahamas, Montreal, and many other exciting places. This was a long way for a farm boy and former garbage hauler to have come! My career was really on track and we were having fun. Our boys were quite healthy, and our life was really quite normal. The boys did well in school and both are smart. And then normal changed.

As I was preparing for work one day, I could feel my heart skipping beats. I thought this was strange, but felt fine. I told my wife who took my pulse and then immediately drove me to our family doctor. When my doctor listened to my heart, a silence came over the room. When I asked her what she thought, she said, I didn’t hear what I expected to hear. I was given an electrocardiogram and a chest X-ray. The electrocardiogram was faxed at once to a local cardiologist. He called back quickly to tell me I needed to go to the hospital right away and that he would be up to examine me very soon. This was not how I anticipated spending my day, since I had never been hospitalized for anything!

A good friend Bill came to see me as soon as he heard I was ill and asked what I was doing in the hospital. I told him I was trying to avoid a coffin! He was surprised and realized I was in a serious condition. I no longer felt invincible. At age 44, I wondered if I would live longer than my dad, who died at age 45. The cardiologist told me my heart was enlarged and my electrocardiogram was not normal. Several anti-arrhythmic drugs were administered with no real luck. What a fun day! I was scheduled for a stress test the next morning.

After waiting for nearly 5 hours with the hospital paging, calling, and doing everything but sending out the police, my cardiologist was located. When he arrived, he apologized for being late and said that he forgot about me. I appreciated his honesty and reciprocated. I told him this was either good news or bad news: it could have been good news if he didn’t think I was very sick, or it could have been bad news if he was an idiot.

Unfortunately, the stress test showed that I could not get my heart rate up to the correct level within the prescribed time and that I had mild congestive heart failure. I was