A selection from

"I'm Glad You're Not Dead"

by Elizabeth Parr

"I was not going to die. I had almost believed, up until this point, that I could recover - miraculously, not by prayer, but by will and ignorance, and absurdity. Now I faced transplant as perhaps the only resort."

Acknowledgements

A Liver Transplant Story: A Note to the Reader

E.R.
My discovery of a liver disease
Initial, ineffective treatment
A "bleed"
Coma

"Searching For Mr. Goodbar": A Good Team Is Hard To Find

I find a good transplant team
The screening process for candidacy
I begin the wait

What The Liver Said: Function And Dysfunction

Brief outline of liver functions
Aspects of life during the wait for transplant
Another bleed
My experience with encephalopathy
Mind control and self-help
Facts about organ procurement and UNOS

"Who Only Stand And Wait"

Dress rehearsals
Pre-op procedures

"Postcards From The Edge"

Activities of daily living
How they decide who gets an organ

"The Final Summons"

I finally get a "new" liver
Regaining consciousness in ICU
Post-op care
Complications
Discharge

"Other Voices, Other Rooms"

Liver transplant support groups
Other case histories
Common problems
Attitude, adjustment, sexual dysfunction

"American Graffiti"

American lifestyle and liver disease
Abuse, tattoos, health fads

"To Arrive Where We Started"

Life after transplant
Guilt and euphoria
Personal support systems
Back to work

Glossary

Chapter One: E. R.

On one of the last class days of the fall semester, 1995, a freshman student of mine approached me after class. He blurted out at me, "I'm glad you're not dead!" Eighteen or nineteen, he looked thirteen or fourteen, a "Generation X" kid, kind of cuddly, a little weird, and very candid. I was startled, and immediately interpreted his oblique compliment as meaning class had gone well; he hadn't been bored. He didn't mean that at all. He explained that he had heard something about my liver transplant, and so this was his sincere and generous attempt at congratulations. He said that I was a nice lady.

I'm glad I'm not dead, too, and that I am back, happily coping with the Gregs of the world, being kept young by their candor, and feeling very alive in their presence. This is the story of how I got not dead.

My knowledge of a liver disease began in trauma, and with a call to 911. During the night of March 5-6, 1992, I vomited blood. This jarring episode occurred in my home, over the course of several hours. I threw up varying amounts of blood over night. I really do not know what I was thinking that I did not immediately alert my friend with whom I live and head for an emergency room. At age 55 I had never been sick. I had never been hospitalized, and like too many Americans, took my health for granted; like too many Texans I had an attitude of invulnerability. I blame our expansive horizons, chauvinism and bravado for this attitude, one which suited me to a tee. On the surface I present a persona of control. I am, for heaven's sake, a teacher. I have a professional image to uphold. My mother named me Elizabeth after the little British Princess. I could not be sick. I could not be having an emergency. It would go away. I considered Ann. She needed her sleep. She, too, was a teacher, and in her Kentucky bred stoicism, met crisis head on, but she taught an at-risk population of high school students, and was a dedicated and compulsive workaholic, a personality facet which students and administrators exploited. She should not be awakened in the middle of a school night. Instead, and to what end, I do not know, I dutifully and compulsively sponged up splattered blood from around the commode with disposable paper -- TP, tissue. After each upheaval I washed my face and rinsed out my mouth as if I were returning to a cocktail party rather than to bed. I waited, not resting, until the blood filled my stomach cavity enough to make me nauseous again, sometimes a matter of two hours, and then repeated my bathroom trip. As I grew weaker, and probably less focused and deliberate, I did a not so impeccable a job of sponging. Blood was spattered everywhere. I remember holding on to the belief that it would stop, and that in the morning I would decide what was to be done. I prayed; I worried. As long as I still moved and thought, I did not think that I could be dying. Descartes was alive and well.

When I finally acknowledged that the hemorrhaging was not going to just go away, and the hour seemed appropriate, I awakened Ann and suggested, in a deceptively calm manner that maybe she had better take me to the hospital.

By this time I was exceedingly weak from loss of blood and welcomed her sensible suggestion that we call an ambulance because that way we would get immediate attention at the emergency room. When the ambulance arrived, I walked to it, simply out of a ridiculous concern that the neighbors not see a stretcher. Ann followed in her car. Her actions during this initial trauma characterized her and her prudent, decisive and loving care throughout what was to become a very long ordeal. She is my best friend. A few years younger than I, Ann and I had already shared a great deal together, outrageous camping trips, seaside crabbing fests, and trips to her mountain home where we "collected" folklore. Now we were to enter into a new phase of our relationship, a far more somber one, but one in which I could count on her in the hard times, too. Loyalty characterizes her; our affinity is amazing. We are both Leos, both have brown eyes and now grey hair, but out of an original natural brown. We resemble sisters more than I and my family sisters do. We do not have to speak to know what the other is thinking. On this occasion, however, she did not know what I was up to, or we would have been at the hospital hours earlier, at the first heave.

The surgeon on call in the emergency room at my HMO hospital in Houston, Texas performed an endoscopy and diagnosed an ulcer. Blood tests revealed a diseased liver. I was assured that, while the liver was damaged, probably it would regenerate, the enzyme levels would lower in time, and that there was sufficient liver function for life. I was advised to avoid toxic substances (alcohol, drugs, tobacco) and to observe good habits of nutrition.

I had observed, and so had my friends and family, some jaundice before this episode, accompanied by frequent blood vessel breaks in my eyes, and, known only to me, nausea. The liver was cirrhotic - a term which means scarred. The scarred tissue is more or less pervasive, depending on the extent of the damage, and is non-functional.

I was attended in the hospital by the internalist on call, who was a member of the HMO with whom my institution, and I, had insurance. I continued to see her regularly, while she and I waited for better enzyme results. They never came. Over a period of more than twelve months, I waited, my condition deteriorated, and I continued to work regularly in a high stress professional capacity. I saw a gastroenterologist only once, at her insistence. There was no appreciable follow-up with him, and no real interest demonstrated on his part. Meanwhile, I was prescribed diuretics for water retention, and continued with frequent but non-efficacious check-ups.

I consider this brief medical summary as a kind of topic statement which will be developed subsequently. Unfortunately, mine is not atypical of the treatment usually given many liver patients. The average gastroenterologist takes a hands-off approach, more often than not, in patients with hepatic pathology. I am afraid that the explanation for this apathy is, all too often, culpable ignorance or plain stupidity on this specialist's part. Misdiagnosis is a common experience for hepatic patients. I will return to case histories of this sort.

For myself, my treatment continued as no treatment. One year from my first hospitalization after hemorrhaging and receiving 5 units of blood, the hemorrhage reoccurred, this time not in my home and under the loving care of my close friend. This time, in fulfillment of my professional duties, I was waiting in a hotel room in Houston, Texas for a Chicago poet who was to conduct a reading/lecture at the university where I was chair of the English department. The poet was Gwendolyn Brooks. I was alone. I had been nauseated for at least a day, but self-diagnosed myself as having a 24-hour virus and was convinced in my usual compulsive manner that the show must go on. To that end, I had driven from my condo in Galveston, to my campus in Houston, literally swerving dizzily 50 miles down a busy and dangerous freeway, in order to hand over my car to two waiting students who would drive to Ft. Worth to meet and escort our guest to Houston.

Somehow, that day, I met my classes and taught them coherently, all the while feeling weaker and weaker. At the end of the work-day, my secretary drove me to the hotel where the students would later deliver the poet in order for me to make final arrangements for her stay. I had a wait of a few hours, so I checked into her room, intending to rest until her arrival. Checking in and approaching the elevator are the last scenes I remember. My next conscious moment found me in a familiar ICU of a Houston hospital. I was conscious; my brain was processing, but I could not speak. I had been comatose for some 28 hours. At this point I must rely on the information gained from others in order to recap the terrifying experience.

I had passed out on the bathroom floor of the hotel room after vomiting blood. Apparently I missed the toilet; there was blood all over the floor. I was not discovered for eight hours. The long interval between check-in and discovery is owing, I am told, to the visitor and students being told by the desk that someone was occupying that room, and so they placed Miss Brooks elsewhere. The door was never opened. I can only attribute this mix-up to a change in desk clerks, because upon registration, I had clearly identified myself as the person who had made the reservation and was there to greet the visiting lecturer. I had told Ann that I would be late that night, returning home about 10:00 pm. As the evening lengthened, she received an anxious call from the students who had expected to meet me and to return my car so that I could drive home. Their call triggered an attempt on my friend's part to reach me at any of several possible places: my office, my sister's, friends' homes, to no avail. Finally, my sister, Margaret, insisted that security in the hotel break in to the room. She listened in horror by phone to the security guard broadcasting to the front desk that: "We have an emergency here." Fortunately, Margaret remembered my doctor's name and the hospital. She called my home, and informed Ann of the situation. Both literally flew to the hospital, Ann with dog in tow because she had no place to leave him overnight, and no idea of what she might find. Even now I am deeply pained by the terrible anxiety I caused these two dear people.

I had not wanted to inform my parents of my illness, so as not to worry them. As the eldest child, I have assumed this position, self-imposed, since the age of reason. This time, being comotose, I was finally out of control. The attending physician was proposing life support and offering little hope of my regaining consciousness ever. Margaret decided that, under the circumstances, she must let Mom and Dad know, and so the circle of those desperately worried, dear people extended, like a pebble thrown in a pool; it devolved to other circles of siblings, friends, and professional colleagues. It was known that I was a sick woman, a condition which for some reason of perverse pride, I wanted kept hidden, and which really, I continued to deny. Even now, after a successful transplant, I cringe when anyone reminds me of how I looked "before," indicating they knew all along a great deal more than I was admitting.

On the occasion of this crisis, I did awake, began to put together my situation, at least enough to recognize the ICU, and with Ann's help to glean some information about what had happened. My strongest memory of first consciousness, before I could speak, was of a male nurse, a former military paramedic, egotistical and abrasive, impatient with my efforts to communicate. I was vulnerable and confused, weak and helpless, but perfectly capable of homicidal thoughts. I remembered with alarm the intense scenario taking place that day, I thought, on my campus, without my indispensable leadership.

When I could speak, I asked for a phone, and was told: "Lady - there are no phones [for the patients] in ICU!" I had barely been proclaimed mentally competent, and I was back in charge. When I learned that my parents were coming, I began manipulating so that I could be in a private room, and they would not have to see me in the ICU. The doctor could not believe that I was even conscious, much less coherent. I asked every orderly who passed through, the date and time, so that I could be ready for the standard compis mentis quiz. I prevailed. My parents greeted me with swollen lip and nose tube, but more or less myself . My sister's means of informing our parents, I had thought, left a little to be desired. She determined to drive to Fort Worth, while I was still comotose, enlisted the aid of our friend Linda, and left my bedside. She thought she should tell them in person that I might be dying. All the while, of course, I might have been dying. It seemed a strange time to make a ten-hour round trip. A telephone call might have been better, but she reasoned that since they knew nothing of my illness officially (wrong - my mother, in her infinite wisdom, has foreknowledge of everything), the shock would be too awesome over the phone lines. The reader might notice that, in this high tech age, communications do not come off too well in this narrative. My friend, Carol, a psychotherapist, assures me that those who care the most often act out in extreme ways in such a crisis and Margaret's reaction was "classic." That she cared, I know. Among the five children in my family I was the eldest and Margaret was the second child. We were close in age and in friendship. As children she had followed me around rather adoringly for which, back then, I could have brained her. In this incident, with me out of control, she began to asert the big sister role which had been denied her by birth order. After all, her name was Margaret. She was next in line to the throne. She was also wonderfully attentive and miserably worried.

A few days and bad meals later, I was discharged, and returned to work one week hence. This not so well equipped hospital, had managed to cleanse my system of the ammonia which the diseased liver could not discharge from my blood. I had passed out from an accumulation of toxins in my brain. A bleed is a common occurrence, always life-threatening, to those suffering from liver disease. I will never know with certainty if I ever had an ulcer, or gastritis, or if all along, as later a competent hepatologist was to discover, the culprit was solely portal hypertension, causing dilated veins in the stomach.

I left the hospital with a more tentative prognosis, no formula for treatment, a prescription which lowered my diuretic dosage, and a nutrition program which called for a low sodium, low protein (20 grams per day) regimen. Transplant was mentioned in the hospital as an option to death, by a very young resident. His argument was sensible enough: in one year, my liver numbers remained unchanged; I was certainly no better. I had added, to my fickle physique, a herniated navel, owing to a water retaining belly. Now, "they" wanted me to lower the daily diuretic dose. My mistrust of scientists, carefully nourished in a strong humanities education, was rapidly attaining empirical justification.

So far, I had been docile. My role in aggressive treatment had been limited to eclectic homeopathic practices. Ann and I haunted health food and drug stores. We seized on anything that promised liver cleansing: herbal teas, lemon juice and raisins (marinating overnight), silimarin capsules, juice fasts, steam sweats. We juiced anything that would squeeze. Most of it tasted nasty (tolerable if you remembered the apple!) but, boy was it pure! Once I OD'd on wheat grass. This time the ready regurgitation was very green. Ann had loyally grown boxes of the stuff, only to have to pitch it. I couldn't even look at it. At her insistence, I began to search for alternative medical programs, no matter what the financial cost. I had been badly jerked around, at the cost of more than a year of treatment. I was not going to die. I had almost believed, up until this point, that I could recover - miraculously, not by prayer, but by will and ignorance, and absurdity. Now I faced transplant as perhaps the only resort. I had harbored the procedure previously as a kind of negative 1 out of 10 chance for recovery. I did not want to die in surgery. I also would not trust the health care system, which had so mismanaged me, to preside over my demise. In their hands, I felt certain of the outcome. Somewhere in here a sea change took place. I was determined to live. I cannot stress enough how important attitude is in the process, but I had to learn that strength of will, and a positive attitude is a tinkling cymbal, without medical expertise. And so I sought it. I sought it with the passion of a lover. I was transformed into a stalker, believing now that a transplant was my only hope, and that I would live, that it offered a cure, not a threat, that it was a solution to an increasingly frustrating problem.

It was summer, some four months after my last bleed, and a time for a healing rest, and a restless quest.