The telephone rang at 1 a.m. My wife, Helen, barely stirred
from her sleep.
"Just a wrong number," I thought, while reaching for the
phone. I had just returned home from work.
"Good morning, Mr. Jagolinzer. This is Dr. Stevenson.
We have a heart for Helen."
"You have a heart?" I asked, not quite believing the words.
I gripped the phone tighter.
"All right, we'll be there. I know; we have four hours
to get to the hospital."
By this time Helen was awake.
"Doctor, Helen would like to talk with you," I said.
Dr. Lynne Warner Stevenson, clinical director of the Cardiomyopathy
and Transplant Center at Brigham and Women's Hospital in Boston, Mass., repeated
the message.
A donated heart had been found for Helen, who was suffering
from irreversible and debilitating heart disease. Three months earlier, Helen's
condition became so serious she was placed on the list of heart transplant candidates.
And now, the call we had been waiting for had finally come.
While Helen hastily packed clothes into an overnight bag,
I searched frantically for a sheet of instructions a nurse had given us, telling
us what to do if we were called to the hospital in the middle of the night.
"Don't worry about it," said Helen as we walked outside,
into a humid night. "Carol Flavell (a nurse from Warwick) told us to go to the
front door."
On the 90-minute ride to the hospital on Interstate 95,
our stomachs churned. The dark roadside seemed blacker than usual. We felt alone.
"I've lived a good life," Helen said at one point. Our
daughter Christina, and her baby daughter Jordyn, were both doing well, she
added.
"You can back out of this," I said. "You don't have to
go through with it."
"I don't have a choice. I want to live."
FOR HELEN, then 55, that morning of April 23 was to be
the most profound step in a lifelong battle with heart disease that began in
when she was six.
It was 1947. Helen and her family lived in the heavily-Polish
"Cabbage Hill" neighborhood of Taunton, Mass. Helen became sick with a high
fever and sore throat. Her joints ached and her chest hurt.
Helen's mother had died when she was three years old.
Now her sister Mary and Catherine Bednarz, a family friend, swabbed her brow
and used cold compresses to try to bring the fever down.
Helen was sick for two weeks. The illness apparently was
rheumatic fever, which can lead to rheumatic heart disease.
When Helen Mirka entered the first grade at the Leonard
School, a school doctor conducted a routine examination of the new pupils.
The doctor listened through his stethoscope.
He heard a rushing sound. It was blood, leaking through
a valve that was not working properly - a heart murmur.
As Helen grew older, she'd notice a burning sensation
in her chest when she exercised, such as riding her bicycle. When she was 12,
her family took her to Children's Hospital in Boston.
"They said there was nothing they could do for her," said
her sister, Mary. "She probably would not live past 21."
Undeterred, Helen tried to do everything a normal teenager
did. She attended Catholic Youth Organization dances on Friday nights in Taunton.
She joined the Girl Scouts and the local 4-H club. In high school she dated
and was a member of the Taunton High School's journalism club.
But the problems worsened. When Helen was 15 years old,
her family doctor referred her to the late Dr. Dwight E. Harken, the chief of
thoracic surgery at the former Peter Bent Brigham Hospital in Boston and at
Mt. Auburn Hospital in Cambridge, Mass.
A graduate of Harvard Medical School, Dr. Harken was a
pioneer in heart surgery. He was the first surgeon to perform consistently succesful
surgery to remove shrapnel from the hearts of wounded soldiers. He and his colleagues
are credited with saving the lives of over 130 soldiers during World War II.
Dr. Harken told Helen that her mitral valve was damaged,
probably from the rheumatic fever she had suffered 10 years earlier. Apparently
the bacteria that caused the fever inflamed the heart, leaving scars on the
valve, which controls the flow of blood between the chambers on the left side
of the heart.
He said that by the time Helen turned 21, her heart would
start to fail.
BUT HELEN WAS was determined to live a normal life.
She bought a Collie, Falla, who accompanied her everywhere.
She graduated from Taunton High School and earned an associate's
degree from the former Chandler Secretarial School in Boston.
We met in Boston on a blind date in 1960. A student in
my freshman English class at Boston College lived in a girls' residence with
Helen.
But her damaged heart consistently caused problems. Besides
the valve problem, Helen also developed atrial fibrillation, an irregular beating
of the heart.
Dr. Harken told her to limit physical activity, especially
strenuous swimming and running up stairs.
Helen was determined to keep up with her peers. In college
she took up skiing and traveling. In 1962, however, she collapsed descending
a ski trail while on a trip to the mountains north of Quebec City, Canada and
had to be hospitalized.
When helen was released, she resumed her activities. But
her condition continued to deterorate, despite being under regular medical care.
In 1968, she collapsed in a grocery store near her apartment
in Watertown, Mass. Two men came to her aid. At a time when cardiopulmonary
resuscitation was not widely known, one pumped her chest while the other breathed
into her mouth until the rescue squad arrived.
She was clinically dead when she was brought in to Mt.
Auburn Hospital, Dr. Harken recalled later. She was in ventricular fibrillation,
meaning her heart was fluttering, rather than contracting regularly.
Doctors gave her an electrical shock to restore a normal
rhythm to her heart.
That Helen survived was a long shot.
For someone to be brought unconscious to the hospital
and be revived after a heart stoppage was as rare "as someone jumping out of
an airplane without a parachute and surviving," said Dr. John J. Collins, Jr.
now a professor of surgery at Brigham and Women's Hospital and a memebr of Dr.
Harken's team which treated Helen.
Helen spent three days in the hospital's intensive care
unit.
A month later, surgeons implanted a Harken Low Profile
Valve, into her heart. The valve looked like a bird cage, with a ball that opened
and shut. The ball bounced against its cage, allowing blood to flow through
the valve. The ball simulated the lid of a natural valve, opening and closing.
Following the surgery, Helen had to take several medications
daily, to strengthen her heart and to control fibrillation. Since the artificial
valve was foreign to the body and could attract blood clots, Helen also had
to take coumadin, a blood thinner. She also developed diabetes.
DESPITE THESE PROBLEMS, Helen worked to lead a normal
life. We married in 1973 and Helen moved from Boston to Rhode Island. She worked
as a secretary and also raised our daughter, Christina.
But her condition continued to worsen. About four years
ago, her heart muscle was failing and the heart was not pumping properly. Dr.
Paul Agatiello, her primary doctor, told me not to be surprised if Helen eventually
needed a transplant. I did not tell Helen because I thought she had enough to
worry about with her other problems and with raising our daughter.
Following a serious bout of fatigue three years ago, her
cardiologist, Dr. William Levin, referred Helen to Dr. Stevenson. I told Helen
what Dr. Agatiello had said.
Helen was admitted to Brigham and Women's for an evaluation.
Eventually, after two weeks of medical tests, Dr. Stevenson
said Helen was eligible for a transplant.
We reviewed the statistics.
Just over 82 percent of heart transplants survive for
a year, while up to 71 percent live four years or more, according to the United
Network for Organ Sharing, a private organization in Richmond, Va., that collects
organ transplant data for the federal government.
Helen decided the surgery would only be the last option.
Her doctors decided on an exercise program, and also changed
her medication, hoping that would strengthen her heart.
Weekly for six weeks Helen went to Miriam Hospital and
rode a stationary bicycle and did other exercises.
She seemed to have more energy, but after several weeks
it was apparent the help was only temporary. She again grew tired quickly and
continued to lose interest in food and was losing weight. Carol Flavell, one
of the nurses working on the case, told Helen that her body was consuming its
muscle.
Helen was checked at least once every six weeks, as her
condition continued to worsen. She was told that without the surgery she might
only have a year to live.
Gradually she accepted the possibility of surgery as the
only option.
In the fall and winter of 1995, Helen prepared for the
surgery.
She met other doctors and nurses who were on the transplant
team.
Helen was told that after the surgery her immune system
would be suppressed, to prevent rejection.
"We can't take a chance on infection because your body
won't be able to fight it," said Flavell, a nurse at Brigham and Women's Hospital
who worked with Helen.
All potential sources of disease were checked.
Since infection can develop even in the teeth all of her
fillings were X-rayed, so any infection developing behind old cavities could
be eliminated.
Six cavities were drilled and refilled.
ON JAN. 19, the day the North Cape barge went aground
off Moonstone Beach, Helen was listed as a recipient candidate. She was in the
fourth category, meaning those well enough to wait at home. (The first category
is for those on life support machines in cardiac intensive care.).
We were given a two-hour briefing about how the list works
and about what to expect prior to, during and after the surgery.
"When (and if) a heart becomes available, don't be surprised
if it's in the middle of the night," Falvell said. Often, that's the time doctors
can get operating room time, to "harvest" the donated organs.
She also told us that when a donor heart becomes available,
two people are summoned to the hospital. One is the primary recipient and the
other is a backup, in case the first person is sick.
A paging company gave Helen a free beeper.
Helen also received a list of instructions, and a telephone
number to call in case the beeper went off. We also rented cellular telephones,
which we carried constantly.
A week after she received the beeper, we were on our way
to Boston on a Sunday night when the beeper went off.
Heart pounding, I pulled off the road and parked in front
of the Providence Police Station. I called, but it turned out to be a false
alarm.
Helen's condition continued to worsen.
In early April the doctors asked her to go into the hospital,
which would move her up on the list.
Reluctantly, Helen left her library assistant's job. She
celebrated Easter at home with family members. It was a way of saying goodbye.
Two days before she planned to go in to the hospital,
we received the 1 a.m. call from Dr. Stevenson that a heart had been found.
"I'M BRINGING IN in a heart transplant patient," I said
to the valet. "Where's the emergency room?"
"Around the corner," the valet said. "Good luck, man."
Helen's sisters, Mary and Alice, met us.
"Is she the primary or the back-up?" I asked a doctor.
"The primary. This is her shot."
Then we were told there would be a delay.
The surgeon, Dr. Gregory Couper was doing another transplant.
Helen was given a bed. The surgery would not begin until
about 11 a.m.
About 9 a.m., Helen went to the surgical preparation area.
Nurses inserted intravenous needles in both of Helen's
arms and a catheter in her jugular vein. Her face was covered by an oxygen mask.
Three anesthesiologist, one toting a plastic gallon bag of assorted medication,
met her.
She signed release forms and insisted on meeting the surgeon.
Dr. Couper, a slim man with a mustache and glasses, walked
in.
"I know you did another (transplant) today," said Helen.
"I hope you're not tired."
"No, I'm not tired."
Helen was wheeled into the operating room.
We went to a waiting area.
"We'll beep you when the surgery is done," said a clerk
at the desk.
I sat in a chair and tried to read a magazine.
I watched other people.
I tried to eat, but food really didn't interest me.
After two hours I checked back with the clerk.
"How's she doing?"
The clerk punched Helen's name into a computer.
"She hasn't gone into surgery yet."
We returned to the prep area and questioned one of the
doctors.
"There was a delay. It's a full organ donation. The heart
is the last organ to be harvested. The surgery should start in a couple of hours,"
said one of the anesthesiologists.
We waited with Helen.
"I'm OK," she said when a nurse checked on her. "My support
team is with me."
There was nothing to do but wait for the heart to arrive.
"We just heard from the team," said one of the doctors
"They're ten minutes away."
"The heart's in the hospital; you can say goodby," the
doctor said a short time later.
Mary, Alice and I kissed Helen. It was shortly after 4
p.m.
"You come back to me," I whispered as the anesthesiologists
wheeled her into the operating room.
THE THREE OF US headed to a basement waiting room. A television
droned. There were some chairs, a table and some magazines.
We were alone, except for another family with a relative
undergoing a lung transplant.
"I wonder if it's the same donor?" asked Alice. I was
wondering that too.
We didn't say anything to them.
I could only watch the television, doze fitfully and pace
the corridor.
"What's going on in there?" I asked myself.
"I've known Helen since college. She's my wife, my best
friend. We've had some good times together. We've even had our arguments. Now
she's where I can't see her, and some doctors are taking her heart out and putting
another one in. What the hell is going on?"
My knees were shaking.
It was all I could do to retain my composure.
Four hours into the operation a doctor came out of the
operating room. I didn't recognize her.
I asked whether she was working on Helen.
"No."
I told her we hadn't had any information since the surgery
started.
She said she would check for us.
"All I can tell you is that it's going well," she said
when she returned.
Shortly before 11 p.m. an orderly came out and told us
the operation was done. Helen's chest was being sewn shut.
He said we could see Helen when they took her to the Cardiac
Surgical Intensive Care Unit on the eighth floor.
A hospital volunteer met us in the family waiting room.
"I'm here to help," he said. "They're getting things set
up. When they're finished you can see her."
As we waited Dr. Couper appeared.
"The surgery went well," he said. "The heart is in; it's
working." I felt relief but also numb from the stress and tension.
Dr. Couper also said Helen's artificial valve was "working
fine," when her heart was removed. But he also said the top half of her heart
had calcified and was in very poor shape.
After that conversation the volunteer reappeared. He led
us to a nurse, who watched Helen all night.
"She's asleep," said the nurse.
I saw Helen, unconscious, with a clear plastic breathing
tube in her mouth.
As I left a nurse handed me the telephone number of the
nurse's station in the unit.
"Call anytime, night or day," she said.
Shaking at the thoughts of what was happening, I left
the hospital.
When I got home a couple of hours later, I decided to
call the nurse. It was the first of dozens of calls I made.
"She's doing well," the nurse said. "She's starting to
breathe on her own."
The next day I arrived at the hospital about noon.
Helen was conscious, but still had an oxygen mask on.
She was connected to an array of tubes and intravenous needles. A catheter was
in her neck.
"I'm coming back to you," she said. She was still groggy
from the anesthetic and shaking from the medication.
Helen passed the first day in the ICU without problems.
She was fed intravenously, while the anesthetic wore off.
The second day she improved noticeably.
She had color in her cheeks. She looked beautiful.
The third day a problem set in.
Helen's stomach had not come around from the anesthetic
yet. She could not keep liquids down. She vomited several times.
I was worried.
"The belly is the last to wake up," from the anesthetics,
said an ICU nurse. "It's not that unusual."
He said there were several steps that could be taken to
correct the situation.
Yet there were signs of continued improvement.
The oxygen mask was removed.
On the fourth day, Helen again took liquid, and held it
down.
I noticed there were fewer tubes.
She sat up at the edge of the bed.
On the fifth day Helen no longer had the catheter in her
neck.
Generally that means patients are ready to be moved out
of the ICU, said a nurse.
That night Helen was moved into a step-down unit. There
the level of care is lower than in the ICU, but is higher than in a regular
room.
There was a yellow sign on the door.
"Heart transplant patient," it said. "Please wash hands
upon entering."
Only one person at a time could visit, for only 15 minutes
at a time. No flowers or fruit - which could be a source of bacteria and possibly
disease - were allowed in the room.
In the step-down unit, Helen learned her home care program.
The major concern with a transplant patient is that her
body will reject the new heart.
"Rejection is something that we seem to be able to manage,"
said Dr. Wendy Johnson, one of her cardiologists.
In rejection, white blood cells, which are part of the
body's immune system and kill invaders, clump around the new heart and destroy
it, said one nurse. Helen was told the chances are "nearly 100 percent" that
she would suffer at least one episode of rejection during the first year after
the transplant.
Helen had to learn the routine of taking nearly a dozen
kinds of medication, to suppress the immune system.
She must undergo periodic biopsies, in which a line is
inserted into the jugular vein so a microscopic piece of the new heart can be
snipped out. The cells are examined to determine any rejection, which doctors
control by varying the medication.
And Helen must follow a daily exercise routine. It began
as soon as she was transferred from the intensive care unit.
In the hospital, she started walking, with the aid of
a walker.
Because our house has two floors, Helen was told she had
to be able to climb 14 stars before she could be released.
And she had to be able to ride an exercise bicycle for
20 minutes.
Because of the suppressed immune system, Helen must also
be careful of a cold, that could turn into pneumonia.
"If you get a cold, call us immediately," said Coleen
Smith another coordinator.
AFTER 23 DAYS, Helen was discharged, the 302nd transplant
done at Brigham and Women's Hospital.
For the first two months after the surgery, Helen was
told to avoid crowds.
She was told not to do garden work, since bacteria in
the soil could cause a potentially fatal infection.
Helen twice has had bouts of rejection. Doctors adjusted
her medication to deal with it.
She spent the summer recuperating, exercising and gaining
strength. After about three months doctors allowed her to drive again.
She must continue to watch her health and exercise.
The doctors will not tell us anything about the donor.
But what has happened remains a source of wonder.
On Sept. 3rd, Helen ran up the slightly inclined ramp
to the Portsmouth Public Library, where she could barely walk before her surgery.
