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Unprotected People Reports: Hepatitis B |
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A Lost Week by Mary E. O'Brien, MD |
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| Click here for a fully-formatted PDF version
of this report |
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| The Immunization Action Coalition (IAC) publishes Unprotected People Reports
about people who have suffered or died from vaccine-preventable diseases.
This is the 102nd in our series. |
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| Dr.
Mary O'Brien, a physician at Columbia University Health Service, wrote this
gripping piece about the rapid deterioration in health of her patient
Thomas, a 25-year-old graduate student. O'Brien discovers that Thomas is
suffering from acute hepatitis B infection. She explains the disease process
from infection to fulminant liver failure. The article is lengthy, but the
prose is vivid and the story is unrelenting. As you read about Thomas,
remember that hepatitis B infection can be a very serious disease and one
that is totally preventable with routine immunization. |
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| IAC reprints "A Lost Week" with permission of
The Gettysburg Review and Dr. O'Brien. First printed 2005. |
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I am a doctor at Columbia University Health Service. Most of my patients are
students who are young and healthy. The challenge is to stay alert to those
who may be seriously ill. Thomas was one such patient. He came to see me on
a morning when I had already evaluated several students with colds, one with
a sprained ankle, a woman who had slipped on ice and broken her arm, and an
employee with severe asthma.
Thomas is a twenty-five-year-old graduate student—tall and attractive, with
short, stylishly tousled hair. He had written down "fatigue and nausea" as
his complaint on the medical intake form. The intake nurse recorded that he
had eaten pork recently and was wondering if he had food poisoning. His skin
looked sallow, and, on close inspection, the whites of his eyes had a yellow
tinge. He apologized for coming in with such nonspecific symptoms and was
concerned that he was wasting my time, but, he explained, he just hadn’t
been himself.
Fatigue can be one of the toughest symptoms to sort out. Patients are
frustrated that they have lost their normal energy level; they just want to
feel better without answering a hundred questions. But since fatigue is
present in almost all illnesses—the flu, heart disease, infections, cancer,
as well as depression, stress, anxiety, too little sleep, too much work—it
always takes careful questioning and a detailed history to figure out what
is wrong and how to treat it.
I asked Thomas if he could go about his regular activities. No, he told me,
he ran out of steam after the slightest exertion. A shower left him bone
tired. It had taken him all morning just to get ready to come see me. He was
constantly nauseated. Even the odor of food sickened him and could trigger
vomiting.
I told him that his fatigue and queasiness, together with the development of
jaundice, indicated a liver problem, probably hepatitis. But what kind of
hepatitis, and how did he get it? Hepatitis is a general term referring to
any illness that causes inflammation of the liver. Alcohol abuse, drugs or
toxins, viruses like hepatitis A, B, and C, parasites, autoimmune diseases
are all likely culprits. A patient’s history often provides the answer even
before the lab results are back. Thomas wasn’t a drinker, and he didn’t take
any medications, herbs, or nutritional supplements. He reported no typical
risk factors for hepatitis B, such as blood transfusions, surgery, and
injection or skin-popping of illegal drugs.
"What about unprotected sex, any new partners?" I asked him. He frowned.
"Yes," he answered.
He had had unprotected sex with another man, but that had been several weeks
ago. Unfortunately, the most common route of transmission of hepatitis B in
the United States is through unprotected sex. The incubation period between
exposure to hepatitis B virus and the onset of clinical symptoms is several
weeks, which fit his history perfectly.
I examined him carefully, searching for additional clues. Other than
jaundice and mild tenderness over his liver, his physical exam was normal.
Then I drew blood to evaluate his liver function and to determine whether
hepatitis B was the cause.
We chatted a bit. Thomas told me that he had grown up in Switzerland and had
learned English when he was eleven. I could barely detect an accent and
congratulated him on his fluency. He laughed and told me he was a great
imitator, and that is how he had lost his accent.
There is no specific medical treatment for hepatitis B, and usually patients
can remain at home during their illness as long as they can keep down fluids
and nourishment. I was quite concerned about Thomas’s weakness and nausea,
but he promised that he would arrange to have someone look in on him to make
sure that he wasn’t getting worse. We shook hands and said good-bye, and I
told him that I would call the following day to see how he was feeling and
to give him the results of his blood tests.
The liver is the workhorse of the human body, going about its myriad tasks
with almost none of the credit or glamour associated with the heart or
lungs. At two-and-a-half to three-and-a-half pounds, the liver is the
largest organ in the body. It synthesizes most of the essential proteins
that circulate in the blood, including albumin and coagulation proteins that
clot blood, as well as many hormonal and growth factors.
The liver is involved in the metabolism of all the foods absorbed in the
intestines.
Nutrients are brought for processing from the intestines to the liver via
the portal vein. They include glucose, which is converted to glycogen, its
storage form; amino acids, which are the building blocks of proteins; fats
that are stored as lipids; and cholesterol. The liver helps regulate these
absorbed nutrients, releasing them into the blood stream when needed or
converting them to storage forms for future use. The liver also detoxifies
drugs and other waste compounds in the body and prepares them for excretion.
Unfortunately, there are no specific blood tests to measure accurately the
degree of liver damage, so I knew that I would have to estimate the severity
of Thomas’s illness by carefully monitoring his symptoms and performing
physical exams and serial blood tests.
Early the next morning, Tuesday, January 13, I received the first batch of
his blood tests, and my worries were confirmed. His bilirubin, a pigment
formed from the breakdown of old red blood cells and normally excreted by
the liver, was elevated. This caused his jaundice. The levels of two liver
enzymes, AST and ALT, which leak out of damaged liver cells and into the
blood, were staggeringly high at 6,000 and 8,000. (The normal range is less
than forty.) But more worrisome was a doubling of his pro-time (PT), an
indication that his liver was seriously damaged and could no longer
synthesize blood-clotting proteins. It would take twice as long for his
blood to clot. This impairment extended to all of the other essential
proteins synthesized in the liver as well as to hepatic nutrient regulation
and the liver’s handling and detoxification of ammonia and other compounds.
Such severe compromise of the liver is not commonly seen in acute hepatitis
B. It can be a sign of impending liver failure.
I called Arthur Magun, an exceptional hepatologist at Columbia Presbyterian
Hospital and an old friend from our days together as medical residents. He
agreed that Thomas’s lab tests indicated severe, acute hepatitis, most
likely hepatitis B contracted from his recent sexual contact. Our main
concern was whether or not to hospitalize him for supportive care and close
observation of his liver function should it continue to deteriorate. I told
Arthur that I would call the patient at home to find out how he was doing,
and then we would make a decision.
When I reached Thomas, about midday on Tuesday, I didn’t recognize his
voice. It was barely audible.
"I just feel too weak to even eat," he said. "I threw up twice and I can
hardly get out of bed to get a drink of water. What’s wrong with me?’’
I explained to him that he had severe hepatitis and asked him to have his
roommate bring him to Columbia Presbyterian Emergency Department so he could
be admitted to the hospital under Dr. Magun’s care. I told him that I would
speak to the doctors in the ER so they would be expecting him.
I have had little contact with the Presbyterian ER since my medical
residency there in the late 1970s and was surprised not only that the ER
phone number was unchanged but also that a familiar Jamaican voice answered
the phone.
"Area A, adult ER. Can I help you?"
"Alkan?" I asked. "Is that really you?" I couldn’t believe he was still
working there. He had been one of my favorite people in the ER.
"This is Mary O’Brien. I was a medical resident there about twenty-five
years ago." There was a pause.
"Dr. O’Brien, the really tall woman," he said. "Yeah, sure I remember
you. How are you?"
"I’m fine. I have two sons who are nearly grown although they still keep me
busy. What about you?"
"Oh, the family’s good. We’re fine."
We both laughed, and then he connected me to the attending physician. I gave
him a brief rundown on Thomas and faxed him his medical record.
After I had finished seeing all of my patients that day, I pulled out
Thomas’s chart and looked through it, wondering whether there had been a
missed opportunity to vaccinate him against hepatitis B, which would have
prevented this life-threatening illness. Later that evening when my husband
and I were cooking dinner, I told him about the case and how concerned I was
and how frustrated that Thomas hadn’t been vaccinated.
"He’s been seen four times at the health service for complaints related to
sexually transmitted diseases (STDs) during the past three years. He’s
obviously not practicing safe sex. So why didn’t someone push him to get
vaccinated? He’s intelligent. Why didn’t he know and ask to be immunized?
It’s tragic. Now he may die from a totally preventable disease."
During that week of Thomas’s illness, I mentioned his case to a couple of
friends with whom I regularly play tennis. They had no idea how severe
hepatitis B infection could be or that everyone should be vaccinated against
it. I polled a few other nonmedical friends who were also unaware of the
public health implications of hepatitis B and the effectiveness of
preventive vaccination. I wondered why this information was not better known
to the public, and why the news media didn’t provide useful public health
information like this rather than frivolous medical reporting on the latest
diet fads or Botox treatments.
It is disturbing that most American health insurance companies don’t cover
the costs of hepatitis B immunization for adults. The result is that these
critical vaccinations are often neglected at great cost to individual
patients, like Thomas, as well as to the entire society. Columbia’s student
health insurance does not cover the cost of hepatitis B immunization.
Remarkably, the New York City Department of Health, despite its limited
budget, will provide hepatitis B immunization free to anyone at its
neighborhood STD and HIV clinics, a measure of the importance a far-sighted
health agency places on this crucial vaccination.
Hepatitis B is a totally preventable disease. Yet it is an enormous public
health problem—approximately 400 million people are infected worldwide. It
is a major cause of chronic hepatitis, cirrhosis, liver cancer, and is
responsible for about one million deaths per year. In the United States,
300,000 new cases of acute hepatitis B are reported to the Centers for
Disease Control and Prevention annually. Worldwide, the highest rates of
infection with hepatitis B occur in Southeast Asia, China, and Africa, where
more than half the population may be infected at some point during their
lives, and many become chronic carriers.
Commonly, in these countries, hepatitis B is transmitted vertically from
mother to child neonatally, thus spreading hepatitis B from one generation
to the next. These children become chronic carriers and reservoirs of
infection in their community by transmitting it to their sexual partners and
later to their offspring. However, if an infant receives hepatitis B
vaccination at birth along with immune globulin, the rate of infection can
be reduced drastically.
A universal immunization program in Taiwan, instituted in 1984, reduced the
hepatitis B carrier rate in children from 10 percent to 0.9 percent over a
ten-year period. A policy of universal immunization of infants against
hepatitis B is in place now in eighty-five countries and should
significantly reduce the disease in children. Since 1991 the United States
has mandated universal vaccination of infants, universal screening of
pregnant women, and post-exposure prophylaxis of infants born to infected
mothers to prevent vertical transmission. Hepatitis B vaccination is now a
routine pediatric vaccination in the United States. A recent review by the
Centers for Disease Control (CDC) reported an 89 percent decrease in the
incidence of hepatitis B in children under nineteen years old over the past
twelve years since these policies have been implemented.
Hepatitis B is also transmitted through sexual contact (both homosexuals and
heterosexuals, especially those with multiple partners), shared drug
needles, or any blood contact. This horizontal route of transmission is the
prevalent one in North America, Europe, and Australia and accounted for
Thomas’s infection.
There has not been a universal immunization program for adults, and so
the rate of hepatitis B vaccination in these high-risk adult groups has
remained low. Not surprisingly they are one of the few age groups that has
experienced an increased incidence of hepatitis B.
On Wednesday, January 14, the rest of Thomas’s blood tests came back. He was
positive for acute hepatitis B and had mounted a huge immune response. It
was probably his own vigorous immune response that was attacking and
damaging his liver. I called Dr. Magun with these results, and he told me
that Thomas’s PT had doubled again in the past twenty-four hours, indicating
further deterioration in his liver’s ability to synthesize blood-clotting
proteins as well as the myriad of other proteins manufactured in the liver.
He was now at much greater risk of significant bleeding. Nevertheless,
Thomas remained alert without any evidence that his liver damage had begun
to affect his brain.
When the liver is severely impaired or failing, ammonia and other toxins not
handled by the damaged liver can accumulate in the brain. Changes in
cerebral blood flow and swelling and increased pressure in the brain can
occur, resulting in changes in mental function that range from mild
confusion to coma and death. This potentially reversible deterioration in
brain function is referred to as hepatic encephalopathy. Asterixis,
sometimes called "liver flap," is an early sign of hepatic encephalopathy.
It is easily elicited by asking the patient to hold his hands straight out
in front of him as if he were stopping traffic. If asterixis is present
there is a rhythmic, intermittent loss of muscle tone, and the hands drop
then quickly resume their original position. This characteristic flapping
was not yet present in Thomas, so we all sat tight, hoping his infection
would turn the corner and the liver would begin healing and working again.
If he didn’t rally he faced acute fulminant liver failure, the dramatic
abrupt destruction of a healthy liver, and his only alternative would be a
liver transplant.
By Thursday, January 15, his PT had risen to ninety seconds, and he had
become a little confused and had developed mild asterixis. He was close to
meeting the criteria for acute fulminant liver failure. Dr. Magun
transferred Thomas to the intensive care unit (ICU) and called in the liver
transplant team to evaluate him. There was no way, short of a liver biopsy,
to determine whether his liver damage was reversible or whether the liver
cells had been destroyed and only a liver transplant could save his life.
With a PT of ninety seconds and a high risk of bleeding, Thomas was not a
candidate for a liver biopsy. Instead, it was decided that the ICU staff
would monitor him closely and try to support him during the uncertain wait
for a liver.
Normally, there is about a two-hundred-day waiting period for a donated
liver in New York City, but Thomas was moved to the top of the list because
of his critical condition. He was not a candidate for a living liver
transplant from his brother or parents, because it would take too long for
the transplanted piece to enlarge and regenerate after transplant, and he
had no liver function to sustain him in the interim.
Seventy-two hours had elapsed since I had first seen Thomas in the health
service; he had gone from simple nausea, fatigue, and jaundice to total
liver failure, with death likely unless a liver were found. I had never
witnessed such a rapid deterioration of a patient with acute hepatitis B.
Thomas is not much older than my two sons. I try to maintain a
dispassionate, professional manner with my patients, but I could not help
but see my own boys in Thomas’s position. I despaired over my powerlessness
while watching this young man fall closer and closer to death with no
available medical intervention to reverse his liver damage, except a liver
transplant.
There are only about 2,000 cases of fulminant liver failure in the United
States each year. Usually, those suffering acute fulminant liver failure are
otherwise healthy, unlike other patients with end-stage liver disease.
Tylenol overdoses account for 40 percent of these cases, idiosyncratic drug
reactions for about 13 percent of them, and viral hepatitis for about 12
percent. In about 20 percent of cases, the cause is indeterminate. Before
the advent of liver transplants, only 10 to 20 percent of these patients
survived. With a liver transplant about 80 percent of patients are alive one
year after transplant.
I wanted to call Thomas’s parents in Switzerland. I was sure they had no
idea of the seriousness of their son’s condition. Ordinarily, I would never
contact a patient’s family without the patient’s express permission, but
that was now impossible because at this stage Thomas was deeply confused. I
spoke with his roommate to get a sense of whether Thomas would want his
parents to know. His roommate told me that Thomas had been in touch daily
with his parents since he had been hospitalized and was quite close to them.
He gave me their phone number.
It was about midnight in Switzerland when I called. The phone rang twice,
and I heard a man’s sleepy voice. I identified myself and explained that Thomas
had gotten much worse, that his liver was failing, and he had been moved to
the ICU to await a liver transplant.
"But we just spoke to him this morning. He sounded a little silly and
vague, but he only has hepatitis right?"
There was a brief silence. Then his mother, who was also on the line, asked,
"Are you trying to tell us that he is dangerously ill and that we should
come there?"
"Yes," I answered. "That’s exactly what I am saying. You should come
immediately."
I hung up the phone and took the subway up to 168th Street to Presbyterian
Hospital to visit Thomas. Besides seeing him and talking with his doctors, I
wanted to broach the delicate subject of getting the names of his sexual
partners so the New York City Department of Health could reach them and try
to prevent the further spread of hepatitis B to other people.
When I entered his ICU cubicle, Thomas was sprawled catty-corner across the
bed, lying on his side facing the wall. His long, slender body was neatly
dressed in blue, windowpane-checked pajamas. Without the beeping monitors or
IV hookup, he looked as if he could have been lounging in his dorm room.
When I called his name, he turned to look at me and giggled. There was no
hint of recognition. Not sure how to start a conversation with a desperately
ill man I barely knew, I said stupidly, "Hi, how are you feeling?"
"Not bad," he said brightly. "I’m going home soon." And he giggled
again. His jaundice had deepened since I had last seen him, but otherwise he
looked unchanged.
"I spoke with your parents," I told him, "and they are coming to see you.
They are worried about how sick you are."
He smiled vaguely and picked at his pajamas. Hepatic encephalopathy can
manifest itself in many ways—as confusion, drowsiness, agitation, paranoia,
or delusions. It was particularly eerie that, in Thomas, it took the form of
an uncharacteristic giddiness and lightheartedness, a blissful unawareness
of his life-threatening illness.
I left to find the doctors on call in the ICU. I spoke to the intern and the
liver fellow, a trainee in liver diseases. After they filled me in on his
condition, I asked whether anyone had gotten the names of Thomas’s sexual
contacts before he became too confused to remember them. No one had, but the
intern volunteered to talk to Thomas with me, and we set off for his room.
His eyes were closed when we entered, but he turned and tittered and winked
at us when we called his name.
"You know we’re worried that the person who gave you hepatitis may also
spread it to other people. We need to know his name," I began. He frowned
and briefly looked serious and then snickered.
"Oh, my lover you mean?"
"Yes," we both answered, our pens poised.
"That’s Paul Jones, yeah."
"But isn’t he your roommate? Is he also your lover?"
"Yes, that’s what I said, my roommate, my lover, my roommate," he laughed
and sat up.
"Well, let’s start with a first name." No response. He seemed puzzled and
embarrassed that his brain couldn’t answer such a simple question. He
gripped his head between his hands and shook it back and forth as if he
might physically shake loose a name from the fog of his confusion.
"Where did you meet him?" Nothing. "Where does he live?"
"In the west twenties, on that long block between Ninth and Tenth," he
replied, clear as a bell, and gave us an exact address.
"How about his phone number? Has he called you? Is it in your cell phone?"
"Of course," he said, and he began crawling around the bed looking for his
cell phone. It was a truly bizarre scene. Here was Thomas, deathly ill, with
his silliness and giggling masking the severity of his encephalopathy. And
here we were, the intern and I, carrying on this conversation about
roommates and lovers and cell phone numbers as if we were planning a
rendezvous.
Thomas continued to deteriorate. When his parents arrived the next
afternoon,
Friday, January 16, he could no longer speak English. Instead, he greeted
them by yelling French obscenities; there was no hint of recognition. On
Friday evening he went into a coma and developed decerebrate posturing, a
primitive neurological sign in which the body is rigidly extended, with the
arms straight at the sides and turned inward at the shoulders, the hands in
fists, and the legs straight out with the toes pointed. It is an indication
of acute and widespread injury to the brain, and it signals a dire
emergency, because if it is not reversed, the person will suffer irreparable
brain damage and die.
Early Saturday morning, January 17, the transplant team swung into action.
Three transplant surgeons, three anesthesiologists, and two nurses worked
for six hours to transplant a healthy liver into Thomas. Miraculously, the
national organ donor registry had found a suitable liver in time. Before
surgery the senior transplant surgeon met with Thomas’s parents and informed
them of the huge risks attendant upon emergency liver transplant surgery,
especially in a case like their son’s.
First, his brain function was already severely compromised, and any further
increase in pressure could cause brain death. While a person is under
general anesthesia, it is especially hard to monitor and regulate
intracranial pressure.
Second, his blood was not clotting, so the risk of major hemorrhage during
or after surgery was substantial, despite the intravenous administration of
clotting factors throughout the operation. Third, liver transplant surgery
is enormously complex, requiring the hookup of three different blood
supplies: the portal venous system, to bring all of the nutrients from the
intestines to the liver for handling; the hepatic artery, to supply the
liver cells themselves with oxygen and nutrients; and the hepatic venous
system, to transport all of the liver’s products into the blood stream for
delivery to the rest of the body. In addition the bile ducts and their
connection to the small intestine must be attached, so bilirubin can be
eliminated through the intestines and the bile salts can aid in the
absorption of fats from the small intestine.
After removing his damaged liver, but before Thomas was fully hooked up to
his new liver, the anesthesia team became responsible for all of the liver’s
functions, such as blood coagulation and maintaining normal glucose levels
in the blood. Amazingly, the surgery was successful, and he lived.
When I went to visit Thomas a few days later, he was out of the surgical
intensive care unit and was on the transplant floor. As I walked through the
door, he smiled and said, "Dr. O’Brien, how nice to see you. Thanks for
coming." He introduced me to his parents. His color was better; his face
was alert. He looked like the student I had met eight long days ago at the
Columbia University Health Service.
"I guess I’m lucky," he said.
"Yes," I answered. "Do you remember when I visited you last Thursday
evening in the ICU?"
"No. The last thing I remember is seeing you last Monday and getting
admitted to the hospital on Tuesday. The rest is blank."
We talked briefly about the past week, and I described his confusion and the
devastating destruction of his liver. He seemed a little unsettled by this
conversation, and it occurred to me how hard it must be for him to grasp the
drama of the past week and his near brush with death when he remembered none
of it. How could he appreciate the number of doctors and hospital staff who
had worked around the clock to save his life? How could he know how worried
and preoccupied with his illness I had been?
"Well, I got my IV out. I feel hungry again and I’m allowed to eat regular
food today. Tomorrow I am going back to the OR so they can close up my
belly. My new liver was too swollen from all of the fluids I got during
surgery, so surgeons couldn’t sew me up after my transplant. They’re going
to try again tomorrow."
I looked over at his parents, who were about my age, slender and tall like
Thomas. I wasn’t sure whether they knew their son was gay or how he had
acquired hepatitis, but I could identify with them as parents dropping
everything to fly over and be with their son when he was deathly ill. Our
eyes met and welled with tears, and I felt their sheer gratitude and relief
that their son had survived.
As I was leaving I told Thomas to call me if he needed anything. Several
days later I e-mailed him, asking how he felt and reminding him to send me
the names of his sexual contacts. A few days passed, and I received an
e-mail from him with the names of his partners and a brief note telling me
he was recovering well and would stop by to see me before he went home to
Switzerland.
The next afternoon he knocked on my door, carrying roses in a lovely beige
ceramic half vase. He had remembered how small my office was and thought the
half vase would fit nicely on my desk. Considering that he had not even
recognized me when I had visited him in the ICU prior to his operation, I
was amazed at his recall of our first meeting. He asked me lots of questions
about what he was like during his lost week. He seemed to be trying to
figure out how, during those several days, he had gone from being a healthy
twenty-five-year-old to nearly dying then waking up with a transplanted
liver. I had witnessed it, so perhaps he wanted me to fill in this strange
gap of time and help him come to terms with his liver transplant.
Ordinarily, prospective transplant patients have several months to prepare
psychologically for surgery and to understand what is involved in a lifetime
of post-transplant care and immunosuppressant medications. Thomas had simply
awakened in the hospital after transplant surgery, with no recall of the
previous several days, to find his abdomen cut open and a new swollen liver
protruding. We talked until my secretary’s voice came over the intercom,
announcing that my next patient had a fever and was waiting to be seen.
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| 4/10/09 • REPORT #102 |
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| Disclaimer: The Immunization Action Coalition (IAC) publishes
Unprotected People Reports for the purpose of making them available
for our readers' review. We have not verified the content of this
report. |
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