The Power of Words. A heart for Helen

2/2/97
A heart for Helen
Transplant brings health, happiness

By BOB JAGOLINZER
Journal-Bulletin Staff Writer

       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, herheart 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 deteriorate, 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 aheart 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 ofheart 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) aheart 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 donorheart 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 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 anesthesiologists, one toting a plastic gallon bag of assorted medication, met her.
       She signed release forms and insisted on meeting the surgeon.        "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 goodbye," 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 newheart 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 newheart 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.
       She went back to work.
       Epilogue: Since she returned to work in September, Helen has done well. Her appetite has returned. She works around the house, exercises regularly and enjoys visits with her daughter, Christina, and her granddaughter, Jordyn, who will be two later this month.
       Her last biopsy, done last week, showed Helen to be free of any signs of rejection. She had two earlier bouts that were controlled with medication.
       Helen is taking part in a study being done by Dr. James Fang at Brigham and Women's Hospital, to determine whether high doses of vitamins C and E will prevent or at least slow development of coronary heart disease in transplant patients and whether they help control rejection.
       Also Helen has joined the Rhode Island Organ Donor Awareness Committee, to help raise awareness of the importance of organ donation.

* * *
       Although the number of heart transplants done annually in the United States has been slowly increasing in the last eight years, there is still a great need for donors.
       According to the United Network for Organ Sharing, in 1995 (the last year for complete figures) there were 2,362 heart transplants done in the United States. In the first six months of 1996, there were 1,190 heart transplants done.
       In 1995 there were 6,966 people on recipient waiting lists throughout the country. The average wait for a donated heart was 213 days. During that year 770 people who died while awaiting a donor.
       Besides the heart, other organs needed for donation are the lungs, liver, kidney, and pancreas. Also heart valves and tissue from the eyes, skin, bones and tendons can be donated.
       The Rhode Island Organ Donor Awareness Coalition recommends that potential donors discuss their intentions with family members, so that at the time of death survivors will be aware of the donor's wishes.
       Donors also should fill out cards and have a sticker affixed to their driver's license, so people will know of their wishes.
       Further information can be obtained from the Rhode Island Organ Donor Awareness Coalition, P.O. Box 40926, Providence, R.I. 02940, (944-1700) or from the New England Organ Bank, 1 Gateway Center, Newton, Mass., 02158. (1-800-446-6362.)

* * *
       A few weeks ago, Helen Jagolinzer sat down with a tape recorder and talked about her struggle withheart disease and theheart transplant that ultimately became necessary. Here are some of her thoughts:
* * *
       As I remember when I was very young I didn't feel well and I always had colds. I worked hard to keep up actively with the other kids. Also when I was young I was quite shy and even in my adult life I'm a little shy. At that time my health caused quite a bit of hardship for me to keep up with other people.
* * *
       In 1968, I had a very frightening experience. My health gave out and I became very ill. My illness was corrected by open heart surgery with a replacement of my mytral valve. I have a prosthetic valve. It was a very good turning point in my life. I became much healthier and stronger.
* * *
       My heart was failing quite rapidly and I was dying. At first the information just blew my mind. At that time I was not aware of organ transplantation. I was upset to think someone had to die for me but today I am living a better quality of life and I am very thankful that person thought of donating his organs after his dying. I think of him everyday.
* * *
       When we received the telephone call at 1 in the morning that I was to go to the hospital and have the operation, I awoke and I went in my nightgown with a warm coat on. I was very hopeful. I have hope every day of my life.
* * *
       When I finally got to the hospital, I had a long wait before the operation. I was very frightened and very quiet. I was very thankful for the doctors and nurses who were working so hard and their research and skill to help me. I kept thinking that if something went wrong and if I did not awake, all this is in God's hands and I just prepared myself for it.
* * *
       When I woke up after the operation, I felt very calm and I noticed myheart beating very quietly and it was just a wonderful feeling. I just remember myheart beating so quietly and feeling very calm.
* * *
       Today I feel 100 percent better. My days are very busy now. I do many things. I'm very active. My presentheart cannot be my ownheart because I think of the person who donated myheart every day. What a person to think ahead of some one else who may need his organs. I will never forget this donor. I will always regard myheart now as a gift.
       Finally I would like to say to people considering a transplant, that it's a big decision and it's very hard to go through but it's worth it. It's worth all the trouble and all the medications that you have to take now after the transplant. It's all worth it because it means a good life.
       I would like to promote organ donation. All of my family has made arrangments to donate their organs since this experience. It's a great gift for someone else. I am very thankful to all the doctors and my family and my pharmacist and nurses who all helped and worked hard to give me the life I have today.

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