To Those Who Knew: Cracking the Code of Medicine's Gravest Error

By Maggie P. Franken

What do the doctors at her work know about this nurse anesthetist that she doesnt even know herself? Some of them know that shes on a broken path of a disease that nobody talked about -its implications are just that dreadful. But shes on a journey that no one could foresee. And her way of looking at the disease would shed a whole new light on the situation.

Its a true story of one person having all the cards stacked against her but beating all the odds instead. All but a few physicians have written her off, but she fights for her life in the most desperate of ways. It would take her a while to understand why they wont fix it and when she does, nothing would prepare her for what she learns about her own medical crises and that of her familys.

In her autobiographical account, youll also learn some important information that should be on your radar next time you see your doctor. Even though it can now be fixed, youll learn why the medical profession doesnt necessarily want you to know about it. Everyone becomes a patient at some point in their life. Be informed and maybe even be a couple steps ahead of your doctor.

• Language: English
• Publisher: iUniverse
• Release date: Jan 7, 2011
• ISBN: 9781450279802

Maggie P. Franken

I’ve worked in the health care profession for 25 years, the last 10 years as a nurse anesthetist. I have a bachelor of science in nursing and a masters degree in nurse anesthesia. I’ve had years of working and training with the airway, the very crux of the disease I talk about in this story. With all my work experience, nothing would prepare me for the day that I would uncover the web of deceit and trauma within my own medical history and that of my family’s. And once that revelation came, I would look at the situation with enlightened eyes–a way of looking at the disease that only I could see. Look through the eyes of this provider and patient and read about how much hope there is out there from the youngest victims of this disease to the oldest. Read why the medical profession doesn’t necessarily want you to know about it and learn about the dysfunction which exists within the system. It can quite literally affect your life.

Book preview

Table of Contents

1. Dad

2. Anesthesia School

3. January 1992

4. Our Daughter

5. Moving to Michigan

6. Mom

7. February 1999. The Antibiotic

8. April 1999

9. May 1, 1999. Surviving the Emergency Room

10. The Cardiologist

11. The Patient in the Recovery Room. The Proof

12. The Referral

13. Plan B

14. Returning to Work, September 1999

15. The Mustard Seed

16. My Mother’s Death

17. April 2000. Another Land Mine

18. The Confrontation

19. The Epiphany

20. One Year Later

21. Winter 2002. The Toughest of All

22. Las Vegas, 2003

23. The Day of Surgery. The Moment of Truth

24. My Life’s Ponderings

Preface

I wrote this book mostly because I know members of the medical profession won’t. As you read this book, you’ll realize how complicated this is. What I do know is that nurse anesthetists are experts in airway management and even though we don’t get credit for it, we practice it all day, everyday. The crux of the disease I describe in this book is the airway. And you might say that I’ve been both an insider and an outsider. I’m not an M.D. which makes disseminating this information more complicated. This information is important for all patients to know.

Acknowledgments

To my husband and daughters who give me the strength to carry on.

Introduction

This is a story about my life. It’s about some experiences of my childhood and my adult life—a story of survival under the worst conditions imaginable. This is a story that needs to be told and a story that needs to be understood so that people will have the information to control their own health, protect themselves, and make informed decisions about their care. This is a story about a devastating disease that nobody discussed —it is just that dreadful and about some doctors who knew it could never be cured, and those who held out hope. This is a book about my experience. I am not providing medical advice but I just want you to have this disease on your radar.

I’ve tried to tell the truth here, as best I can. Understand that while what’s in the past is in the past, the world can be cruel for someone like me with this disease and no legal rights. Things have been done to me but I try to give you the facts and not so much emotion. I’m not trying to excuse anyone for what they’ve done either. I want you to draw your own conclusions. But don’t get me wrong. There should be consequences. The other (main) reason for this story is that this condition (an abnormality of the airway) that I describe could have been fixed as of January, 2001. As far as I can tell, nothing has been done since then on behalf of affected patients. And I don’t think you’ll get this information from another source. So buckle up. This can be graphic at times. Here we go.

Chapter 1

Dad

The day my father died was undoubtedly one of the lowest points of my life. Emotionally, I felt that rock bottom was not far off. But to this day and for the days ahead, I find that rock bottom is no place to live– not if I will survive in this world.

They called me at work on that June day in 1991. I was working as a nurse, with my sights on becoming a nurse anesthetist, with plans to start that program out of town in the fall. I was making some extra money to pay for school by working as a critical care nurse that summer. I got a call from my mother at around 11 that morning. She seemed calm, but her message was far from consoling: My father had died. There was nothing I could say except to tell her that I would be home soon. Once I got off the phone, I went into the nurses’ lounge and sobbed. I knew in my heart how he had died. My mother didn’t even have to tell me. He had been suicidal for as long as I could remember, but his timing couldn’t be more devastating. You see, my dad and I had had an argument the night before. It was about the usual subject–his health.

After four years of dealing with his deteriorating mental state, I grew weary of coping with him and the clean bill of health his doctors had given him. He wouldn’t (I would later learn, couldn’t) take the anti-depressants that were prescribed for him, and so he never got better. It was horrifying to watch this man deteriorate… like watching a POW spiral downward. He was an emaciated, psychotic, yellowing shell of a man. He wouldn’t eat. He wouldn’t sleep. He couldn’t even sit quietly, as his skeleton would tremble. What frustrated my sisters and I was that his doctors gave us his formal diagnosis: nothing was wrong with him. He was just depressed. In retrospect, they knew his diagnosis exactly—pulmonary hypertension, that is, but they weren’t about to tell his offspring that, or how it could never be fixed. His general diagnosis would continue to make no sense and would remain so until my own health deteriorated mysteriously in the same way years later.

Saying good-bye to a loved one is hard, but suicide makes it harder still. My father’s suicide was a terminal end to a terminal illness—a completely understandable course of action on his part. Who in their right mind, and he wasn’t, could tolerate such symptoms for four years? Some people would even say he died of natural causes. No theory matters. I can say without a shadow of a doubt that suicide tears a family apart limb by limb. At first, and sometimes forever, family members experience the intolerable guilt that results from that kind of death. He left no note that day, just emotional carnage.

That day, the nurses at the hospital called a family friend to take me to my parents’ home in Windsor. She was there that day for an agonizing ride home. All the way to Windsor, she denied that my father would have taken his own life, but I knew better. As we pulled up to our street, I saw police cars in my parents’ driveway.

I walked into the house and surprisingly, what I found was certainly not a house full of mourners. Amid the chaos, my mother was there and she probably explained to me that Dad had hung himself in the basement that morning. My memory of the exact conversation is scant, and well it should be. On that day though, everyone would agree that it was my mother’s reaction to my father’s death which was most shocking. She was simply going about her business, making sandwiches for the police, friends, family, and priests who were there. Was she in shock? Was she in denial? Did she have any feelings of relief? Or had her symptoms of early dementia started to set in without our realization? No one had time for her insidious medical issues. They must be due to stress. All our efforts had been focused on making our father better.

The day of my father’s death, I’m sure I moved in a fog. Luckily, I wasn’t the one who had to call my sisters with the devastating news. My oldest sister, also a nurse, lived in Calgary, Alberta, with her husband, an obstetrician. It was no coincidence that she was the one who had moved farthest away not long after she graduated from nursing school. She and my father had a turbulent relationship, especially during her teenage years. Even she would agree that she had been a challenging teenager compounded by some bad influences at our Catholic high school. I remember those as the dark times in our household. I began to fear my father, and I stayed away from home as much as I could. My father’s anger was out of control, probably fueled by his feeling of helplessness to control the situation and my sister always resented him for his anger. As an adult, I realized how much she really needed help, but no one was there for her. My father was a deeply religious man, a man whom I saw praying on his knees every night but he was also a person who preferred to take matters into his own hands. Maybe he didn’t feel that help would be available to him or my sister. Maybe it wasn’t.

So when my father became ill, my oldest sister was probably the most frustrated with his lack of response to therapy and medication. He would apparently call her with his suicidal thoughts, and frankly, after a while, those threats take their toll on any listener. At one point, she contacted his psychiatrist and had him admitted to the psychiatric ward at the hospital. Nothing was done for him there. Medication was clearly not an option and my father refused shock treatments. After a few pointless days at the hospital, he was discharged.

My middle sister, also a nurse, was living in Wisconsin, coping with an unhappy marriage to her husband, a plastic surgeon and working to raise their three children. There was little doubt that she would take the news the hardest. My father had told her during many phone conversations that he had heard voices telling him to kill himself. It should have been no surprise that he finally took his life, yet it was still a shock. Each of us had our own life though. There were times when I felt that I should put my life on hold to care for my father but what good would have come from that? I was only 30 years old, and I had already spent a good portion of those 30 years fearing for my father’s fate. I felt as though the emotional bank account that I had set aside to help with aging parents was already empty.

The cloud around me and my sisters hung heavily with the thoughts all of us were thinking, but couldn’t verbalize. What if we took after our dad? We were terrified that we all might have inherited his tendencies. I couldn’t push the selfish thought away that I felt more concerned about my future than his. In years to come, we were going to expend a lot of energy not being like him. We were going to deny, despite our paths, that we had any symptoms of depression. It didn’t matter that his illogical diagnosis was negative. We just didn’t want to die like he did.

Nothing in my father’s family history, or so it seemed at the time, gave us any clues into his mysterious affliction. His parents were educated people, his mother a nurse and his father a surgeon and he was also in the military. He was a colonel in both World Wars, and later I couldn’t help wondering about the alignments he forged for himself during those WWII days. After his military and medical career, he became involved in politics, serving as a member of Parliament for the Canadian government and as mayor of a small town in Ontario. He was no doubt a busy man. Although I was too young to know him well back then, I pictured him as a real servant to his country. What I also thought was interesting about my grandfather was that he delivered all three of us way back when. He was a general surgeon but I envision him insisting on being there at our delivery. Why was it so important for him to be present at our births? I suppose he just wanted to give us the best start he could.

My father came from a large, devoutly Catholic family–eight children in all. As far as medical history, it seemed at the time that there were no dots to connect. My grandfather died in his 90’s, basically of old age, and my grandmother, in her 80’s from a heart attack. Two of my father’s siblings had died before him. My uncle drowned in his 50’s, although there was always much confusion surrounding his death. My aunt, someone who suffered most of her life, died of respiratory failure in her 40’s. You could hear my aunt breathe from another room, always air-hungry. She was our piano teacher and never married. She had gone into the convent to become a nun in her young adult years, but her asthma was so bad that she couldn’t continue her education. What I learned from my aunt’s and uncle’s history (much later) was that there are apparently many manifestations of this disease.

Much of my memory of my father’s funeral was that it was difficult but what made it more so was breaking off a relationship with a longtime boyfriend. We had been off and on again several times. I was a critical care nurse at a large medical center, and my then boyfriend was in his residency when we met. We had a somewhat rocky relationship even before I was feeling the stress of dealing with such an ill family member. One night in particular, we were having dinner with my parents at their home. We were sitting all together when my father talked about his plans to kill himself. How many pills do I have to take to kill myself? he asked my boyfriend and I. Even though he tried not to show it, I’m sure that conversations like that took a toll on him as well, especially since I assume he knew exactly what was wrong with my father. But when the time came for him to be with me at my father’s funeral, he refused to go. He went on vacation instead. I knew that was the sign I needed to break it off for good. The timing couldn’t have been any worse, but if he wasn’t there for me during the really tough times in my life, our future looked pretty dismal.

To make the break-off more difficult, in a few short months, we were both headed to the same city. I was serious about not seeing him again, and so I was determined to make the break permanent. I would have to take measures to reduce the chances of us seeing each other. He didn’t know where I’d be living, and I would not post my phone number in the directory. I was oblivious to the thought that he must have harbored feelings for me, both negative and positive. God had a different plan for me. I was going to move on with my life, and I thought he would too.

At the funeral, the friends and family who spoke fondly of my father’s life meant the most to us. With him being sick for so long, we had forgotten the days when my father was healthy. And why did my father seem to pick on me? Couldn’t he pick another day to kill himself? Later in my life, I would gain a clear understanding of his timing. It couldn’t have been more obvious. But at the time, I resented him, yet empathized with him. It was somewhat comforting to know that he hadn’t been in his right mind anyway.

After I sold my townhouse that summer, I lived with my mother until I moved away to go to school. Everyone went back to their lives as usual. I went back to work as a nurse, and my mother went back to her work as church organist and secretary. Our paths crossed in the evenings and I’m glad I had the time to spend with her. She seemed emotionally vacant though, and I worried about her. I went to a suicide support group with her, but the wounds were still too fresh. I even took her to a therapist with whom I had worked but my mother wasn’t from the generation that necessarily believed in therapy. She insisted that her work at church was her therapy.

The summer of that year had certainly started with a bang, and it was taking a toll on my body. If what they say about the immune system and stress levels being connected is true, I could have been the poster child. I worked my usual 50-hour week. I exercised, biking, running, and swimming as though I had endless physical energy. One day, while biking hard, I had abdominal pain that just wouldn’t quit. I pulled over to the side of the road writhing in pain, lying there helplessly until the pain stopped. That day, the pain left as mysteriously as it had started. The following day, as if one symptom had anything to do with the other, I noticed some hives starting on my face. The next thing I knew, I was covered with hives. I think I even had them on my ears. I hadn’t eaten a new food or taken any medication. It made no sense. Later that summer, I knew my body was really stressed when I noticed a bald spot that appeared next to my hairline by my face. I plodded on.

That summer, I had a few dates with an anesthesiologist (an ologist) who had asked me out. He was a very nice person, and I think a few times he tried to talk me out of anesthesia school. In retrospect, I couldn’t say that anyone at all encouraged me to pursue my anesthesia career. I just felt it was something I could really enjoy doing, and I think it was the Holy Spirit’s prompting that would lead me down that path, albeit a broken one.

I still planned to move out of town in the fall to start anesthesia school. Moving to a new city wasn’t foreign to me, although it would be the farthest I’d moved from my hometown. Besides, my first big move was to the