I Left My Heart At Stanford . . .

I Left My Heart At Stanford

But They Gave Me A New One

by

Don & Mary Coover

Smashwords Edition

Copyright 2012 Don Coover

Copyright 2012 by Don Coover. All rights reserved. No part of this book may be used or reproduced in any manner whatsoever without written permission. For information, address Arrowhead Classics Publishing, Los Angeles, CA; Newcastle, CA. visit: www.arrowhead-classics.com

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Table of Contents

Preface

Chapter One – Beginning Years

Chapter Two—Realization of Don’s Illness

Chapter Three—Meeting New Doctors

Chapter Four—Introduction to Stanford Hospital

Chapter Five—Defibrillator & Low-Sodium Diet

Chapter Six—Memorial Hospital 2005–2006

Chapter Seven—Placement on Heart Transplant List

Chapter Eight—Two Transplants in Five Days

Chapter Nine—Six Weeks in ICU

Chapter Ten—Getting Into a Routine

Chapter Eleven—Intermediate Room

Chapter Twelve—Physical Therapy

Chapter Thirteen—Rehabilitation

Chapter Fourteen—Seeing Some Progress

Chapter Fifteen—Moving to the Apartments

Chapter Sixteen—Settling In

Chapter Seventeen—Returning Home

Chapter Eighteen—Testing For Kidney Transplant

Chapter Nineteen—The Kidney Transplant

Chapter Twenty—Recovering From Surgery

Chapter Twenty-One—Returning Home & BK Virus

Chapter Twenty-Two—So Thankful

Chapter Twenty-Three—New Beginnings

Preface

After Don Coover successfully survived two heart transplants and one kidney transplant, he and his wife sat down and wrote about their experience of living through a frightening period together.

Each chapter in this book offers a perspective from Don or Mary of the progression of Don’s life-saving transplants.

It is a story for others who might be entering the same long tunnel, especially since there is a light at the other end and it reflects a

happy ending.

Donald Gazzaniga

Megaheart.com

1

Beginning Years

Don

The last thing I remembered while being wheeled into surgery at Stanford University Hospital in Palo Alto, California was my wife Mary saying, Think sex. These were her parting words before my many surgeries that I was to experience in my adult life. These surgeries would be the result of health issues from birth.

On October 31, 1944, I was born six weeks prematurely and weighing only three pounds at Santa Rosa’s Tanner Hospital, which was housed in what was once an old Victorian home. I was delivered by Dr. Alexis Maximov, who was one of the first OB/GYN specialists in the area. He asked one of the attending nurses if he could borrow her hot water bottle which she had brought to work for her stomach cramps. Dr. Maximov placed me in a shoe box with the hot water bottle under my tiny and wrinkled body for transportation in his car to County Hospital, which was north of town and where they had incubators. Hospitals in those days were far from what we have today, especially in a small town, which Santa Rosa, California was then. I remained at County Hospital for approximately six weeks until I was strong enough for going home. With being premature, my lungs and digestive system were not fully developed. So having that six week stay was very important for helping my little body get a decent start in life. Having a Halloween birthday and with being born surprisingly prematurely, I don’t know, even to this day, whether I was a trick or a treat. Maybe neither or maybe both.

I learned that being born prematurely was just the beginning of a very interesting and challenging childhood and an adult life full of surprises. I had tender skin which would cut, tear, and traumatize easily. As a child, I knew early on that I was different from the other children. I would fall as most kids do, however a cut or a scrape on most children would end up being a gash on me, whether it be on an arm or leg or even torso. The injury would be a gaping wound requiring hours of stitching and butterfly closures. Ending up in the emergency room or the doctor’s office was a rather common occurrence, with follow-up visits, possibly for weeks during the healing process. The wound would not bleed much, however the skin would tear and separate as though there was no skin there to begin with. Through my younger years, I had to be very careful, trying to avoid rough physical contact while playing with friends and participating in sporting activities. However, that did not always work out as planned, and I have the battle scars to this day as evidence. Some examples through childhood and into my adult years were; falling off monkey bars and splitting open my chin, falling off the bicycle and ripping open my side on the bike chain, slipping off the bike pedals and tearing open the back of my calf above the ankle, and splitting open the inside of my calf while falling through the steps of bleachers at a football game. I also split open the inside of my left calf in the process of falling off the roof of my parent’s house and into the bushes below while helping with a re-roofing job. Another time involved ripping open the back of my calf as I slipped on a wet step of the front porch. You might think I was a klutz and should have lived in a plastic bubble, but as I mentioned before, my hyper-elastic skin was the culprit.

My father was a big man with skin like cow hide and he played all sports well, through high school and college, earning a football scholarship. Athletics were an important part of his formative years, so I felt I had a need for trying to follow in his footsteps. I played Little League Baseball and tried basketball and track. Although, it didn’t take long to realize I was not able to be as aggressive as was needed for excelling in those activities. I always had a fear of injuring myself when it came to contact sports, so I settled on swimming which gave me a better chance of avoiding bruising and tearing open my skin. I felt safe in the swimming pool, spending summers on a community pool team and three years competing on my high school team. While the other spring sport athletes were sweating on the track or the baseball diamond, all of us swimmers were nice and cool in the pool.

While growing up I never knew of any other children that had my skin condition. Believing at the time, it was only a skin problem and with proper precautions, I thought I was able to live a good quality of life. I was somewhat of a side show growing up. I could pull my skin several inches away from my body, especially at the joints, knees, elbows, neck, and underside of the arms. The term, chicken skin could have been a good comparison. Kids would call me Stretch. I guess I thought it was kind of fun. I could also flip my upper eyelids up and make my fingers and thumbs bend into right angles.

I lived into my 40s thinking my situation was just a hyper-elastic skin condition. However, by my mid-40s, I started to develop heart problems, and it wasn’t until I ended up in a hospital emergency room that I learned my condition was called Ehlers-Danlos Syndrome and was the precursor of many problems to come. According to the National Ehlers-Danlos Foundation, EDS is fairly uncommon and is thought to affect 1 in approximately 5,000 people worldwide. It is found in both males and females of all racial and ethnic backgrounds. Ehlers-Danlos Syndrome is a group of inherited connective tissue disorders which are characterized by joint hypermobility, skin extensibility, and fragile tissue. People with EDS have a defect in their connective tissue. It’s this tissue that provides support to many body parts such as skin, muscles, ligaments, and organs. The fragile skin and unstable joints found in EDS patients are due to faulty collagen. Collagen is a protein that acts like glue in the body, adding strength and elasticity to connective tissue.

There are six types of Ehler-Danlos Syndrome. The type I have is most closely associated with the Classical type, with manifestations of stretchy skin, easy bruising, widened scaring, and joint hypermobility (sprains & dislocations). In my teen years I had several instances of dislocations of my left shoulder. The skin is soft and velvety almost dough like with scaring found mostly over pressure points such as knees, elbows forehead and chin. Muscle tone and delayed gross motor development may also be evident. A particular type of EDS will run true within individual families, as seems to be the case in mine.

My mother had Ehlers-Danlos Syndrome and it was genetically passed on to me. It seems to have run male, female in our family. My mother’s father had the condition, his mother had it, her father had it, and so on, as far back as we know. My mother had a brother who did not have the condition and none of his children; a girl and two boys were affected. I have two sisters who do not have the condition and none of their children; five girls and one boy are affected. I have one son, who does not have it either. EDS in our family seems to have run father to daughter, mother to son. If I had had a daughter, most likely she would have been born with Ehlers-Danlos Syndrome and she in turn would most likely have passed it on to a son. With me having a son and no biological daughter, my theory at this point is EDS, in our family, may have come to an end. I have no facts or studies for basing my theory, however, looking back through five generations on my maternal grand-father’s side of the family, and being from Leicester, England, seems to support my theory. My son has not had any genetic testing, however before he considers having children, he might want to do so. Having children always posed a big question in my mind, with knowing my experiences as a child and not wanting to pass my condition on to another generation, I struggled with the decision of even having children. So when Mike was born a healthy child and did not have EDS, there was great relief on my part.

My mother struggled her whole life with Ehler-Danlos. As I mentioned, she had the same condition as I have, however her health issues were manifested somewhat differently than mine. Raised on a ranch, she would fall and injure herself in the same manner as me, with the same results. However, as a young girl, she had intestinal and digestive issues that continued through her adult years. With age, osteoporosis became an increasing problem causing extreme pain in her neck, hips, and knees. Pain and disfigurement in her hands presented many challenges when trying to perform the simplest tasks. Mom was under care of an arthritic specialist for years undergoing periodic shots of cortisone in her joints to help with pain management and mobility. She was a trouper, always remaining upbeat and cheerful, not wanting to show just how much discomfort she had to endure. The digestive, intestinal, joint, and arthritic problems I have experienced over the years have been much less troublesome than hers, at least at this point in time.

I believe it was in the fall of 1990 that I began having some strange sensations in my chest. I thought it might have been indigestion or acid reflux. I would feel pressure in my chest, light headed, and sweaty. It would happen occasionally and only for brief periods. I didn’t think too much about it due to the fact I felt fine the rest of the time. A year earlier at a checkup with my longtime family physician, Dr. Robert Huntington, I might have expressed some concerns in regards to my heart and was referred to a cardiologist, Dr. Gregory Hopkins. During the initial visit, he listened to my heart and took chest x-rays. Everything at that time seemed to be okay. This was sometime in 1989. So jumping forward again to late summer and fall of 1990, these spells became more frequent. My wife Mary and I were in San Francisco for a dinner and a play early in October and while dining, I began having these earlier mentioned symptoms. Still thinking it was acid indigestion, we stopped at a nearby pharmacy to pick up some antacid. Mary drove us straight home without even seeing the play. By the time we arrived back in Santa Rosa, I felt fine once again. This was on a Thursday evening. The following day I stayed home from work and was able to get an appointment late in the day with Dr. Huntington. He ran an EKG, listened to my heart, and sent me home saying everything appeared to be okay. Early the following morning, Saturday, I was driving Mary to a scheduled school class and passed out on the way. Seeing me slumped over, she yelled, Don which must have been enough to bring me out of my trance. I managed to pull the car over to the side of the road where after getting into the driver’s seat, she turned the car around and brought me back home. Mary then went on to the class. The original plan was for me to take her to the class, and pick her up later in the afternoon. As the day transpired, another plan of attack might have been smarter. As the morning progressed, the symptoms became more severe than I had ever experienced before, with accelerated heartbeat, pressure in the chest, lightheadedness, and sweating. Knowing I couldn’t drive myself to the hospital, I called my mother who in turn called my brother-in-law, Jack, who came directly, taking me to the ER at Santa Rosa Memorial Hospital.

While in the emergency room, I was fortunate enough to be paid a visit from Dr. Hopkins, the cardiologist I had seen the year earlier, who just happened to be on call that day. He immediately got me started on a series of tests, EKG, echocardiogram, and a heart biopsy. The biopsy was performed thinking I might have contracted a virus in my heart. Later that afternoon, Dr. Hopkins came into my room and told me my situation was very serious, that I had an enlarged heart with a leaky mitral valve. The term he used was cardiomyopathy. My heart rhythm would become irregular and very fast paced, (tachycardia) to the point of not pumping blood properly. This placed the heart in a very ineffective and compromising position, thus explaining the reason for all my symptoms. Of course, I was scared to death, with the uncertainty of what might lie ahead. I said, I don’t want to die, I am too young for all of this.

I was admitted and was to stay in ICU at the hospital until Monday, when Dr. Hopkins had made arrangements for me to be transported by ambulance to Sequoia Hospital in Redwood City, California, which is just south of San Francisco. I remember the ride in the ambulance with two attendants and a nurse and being all wired up with heart monitoring equipment. It was a strange feeling viewing the world on my back, facing backward, and watching Mary and my mother following behind in our car. It will always be an unforgettable experience. At Sequoia Hospital, they were to perform, what was referred to as electrophysiological studies on my heart. With these, cardiologists would force my heart to perform in a desired manner electrically.

Next, particular drugs would be introduced into my body to see which combinations of those drugs would correct the tachycardia and help the cardiomyopathy. The reason for being transported to Sequoia was Memorial at that time was not performing these studies. After two weeks of testing, the right combination of medications was decided upon and I was able to return home.

Sequoia Hospital was state of the art when it came to heart care. One complete floor of was designated to studies, research, and care of the heart. In fact, Dan Reeves, an all pro football player and coach had been a patient at the hospital a year or so earlier. Hearing that, I felt I was in a good place. During my stay at Sequoia, we learned that one of my doctors had invented the defibrillator a few years earlier. He had previously received a degree in electrical engineering and later earned a medical degree, specializing in cardiology, where he then used his combined fields of knowledge to invent the defibrillator. The early defibrillators were external units and were too large for chest implantation. The units today are much smaller, smaller than maybe the size of an iPod, and implanted in an area in the upper left chest, to the right of the shoulder and just below the collar bone. As with all of our modern day electronics becoming smaller, one can only imagine how much smaller a defibrillator might become in the future. During my stay at Sequoia, there was discussion that I might have been a candidate for a defibrillator at that time, however, that avenue wasn’t taken, seeing how well I responded to the new medications.

Defibrillators are implanted when a poorly performing heart has the chance of stopping. The device monitors the heart function and if the heart should stop, the defibrillator shocks the heart back into rhythm until it’s beating properly again on its own. These implanted devices offer the same benefit as provided by external paddles that emergency personnel would use to shock a stopped heart back into action.

2

Realization of Don’s Illness

Mary

The first time I realized there was something wrong with Don’s health was on a Thursday in early October of 1990. I had gotten up early that morning to get my clothes ready for that evening because we were meeting after work to go to a play in San Francisco. We had inherited fantastic seats from Don’s parents for the light opera series. They had been improving their seats for years and asked us if we wanted to take them over. I was so excited about the play that night because it was La Cage aux Folles. I had been talking about it a school for weeks. One of the teachers had jokingly told me that he would love to take the tickets off my hands if I really didn’t want to go. I rushed around school all day getting my lesson plans prepared for the next day so I could leave as soon as school was finished. I left school, hurried home to change my clothes, and rushed down to Petaluma to pick up Don. We left his work car there and drove one car to San Francisco. Before the play, we were having dinner at Scott’s Seafood Restaurant where we started with escargot. Don had taken only a few bites when he said he didn’t feel well. I told him it was probably nothing and told him it would probably go away if he ate some more. But it didn’t.