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The Wait

Tales from the Organ Queue

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Rose Brooks sat in a gray reclining chair and pulled a thin white blanket up to her neck. The blanket slid off her left arm, where two fat hoses full of blood hung from three-inch-long track marks. For the moment, the track marks--hard, puffy, and raised due to frequent needle jabs and operations on the veins underneath--were no longer the most prominent feature on the underside of Brooks's forearm. The clear, long tubes coursing with blood were.

The tubes ran from Brooks's arm across her blanketed lap and up to a rectangular machine about four feet high covered with lights, switches, and buttons. A motorized wheel went around and around as the machine sucked blood from Brooks's arm through a tube and into a cylindrical filter on the mechanism's side. Another tube pumped the filtered blood back into Brooks's body.

"I get cold during this," Brooks said, pulling the blanket a little closer.

On this spring day Brooks was one of 13 patients hooked up to hemodialysis machines at the North Central Dialysis Center, 55 E. Washington. Periodically, lights on the machines would flash and alarms would buzz. White-coated nurses and assistants flew from patient to patient and checked the vital signs of the patients and the machines.

An alarm sounded on Brooks's machine and a nurse appeared. She flipped a switch to stop the alarm buzz and then turned a dial on the machine, adjusting the pressure of the blood flowing back into Brooks's arm. "I don't feel so good," Brooks said.

The nurse took her blood pressure. "It's low," she said, and injected a saline-filled syringe bigger than a beer can into the tube feeding the blood into Brooks's arm.

As the machine pumped away, blood saturated the porous, hairlike fibers inside the clear cylindrical filter. A clear hose drew a chemical solution into the filter from a plastic gallon jug on the floor, bathing the porous blood- filled fibers and bringing the chemical balance of Brooks's blood back to normal. Another hose spit the used solution and the impurities filtered from her blood into a drain.

"I don't feel no better," Brooks said, and waved to a nurse. "I feel the nausea right in my throat." She tipped her chair back. Another nurse came by and adjusted the bag of saline that was attached to the hose pushing blood back into Brooks, so that the solution began dripping and mixing with her blood.

Brooks began looking anxious. "I feel my pressure going down some more," she said. "It's hard for me to breathe."

The nurse took her blood pressure again. Her face showed concern. "Audrey, give me some five-percent," she commanded. She grabbed the huge syringe and injected it into the tube. "Bring me another one." When the two syringes were empty, the nurse took Brooks's blood pressure again. Another nurse came by with a cup of instant soup.

"I can't keep that down," Brooks said, and waved her away. The nurse who had just taken her blood pressure replaced the now-empty bag of saline with a full one and started it dripping.

"I'm gonna be sick," Brooks said, bringing her chair up. The nurse quickly stuck a garbage can under her chin and Brooks vomited. The nurse took the can away and tied up the plastic bag inside. Brooks's cheeks puffed out and she put her hand over her mouth and sat up further. The nurse brought her another garbage can, and she vomited again. Then she sat back in her chair and laid her free hand on her chest. The nurse grabbed it and took her blood pressure again. "It's up," she said.

"Yeah, I feel better now," Brooks said. The nurse walked away. "At least I didn't pass out. Sometimes I pass out. One time I woke up and six or seven nurses were standing around me and I didn't even know I'd passed out."

A doctor stopped by, picked up Brooks's chart, and asked her how she was. "OK," she said. He replaced the chart and left.

"One man passed out and passed away," she continued. "He had a heart attack and they couldn't get him back. But they haven't had a death here in about two and a half years."

Brooks is a diabetic, and she's been on dialysis since her kidneys started to give out in 1985. She'll continue on dialysis until she can get a pancreas-and- kidney transplant, which she's been waiting three years for, or until she dies.

Kidney failure is pretty common among type-one diabetics like Brooks, people who have had the disease since childhood. Only 10 percent of diabetics are type ones; the other 90 percent, type-two diabetics, develop the disease later in life. Diabetic complications--besides kidney failure, there's heart disease, nerve damage, and blindness--usually take some 20 years to develop, which is why a type two has a good chance of avoiding these problems. But sooner or later type-one diabetics develop one or more of these, along with related problems that worsen over time.

For a diabetic with kidney failure, the closest thing to a cure is a kidney transplant combined with a pancreas transplant, since it's the bad pancreas that causes diabetes. The pancreas is really two organs in one. One part secretes digestive juices that break down food, and the other produces insulin and glucagon. The glucagon pushes blood sugar levels up, and the insulin keeps blood sugar levels under control. If the pancreas stops producing insulin, blood sugar levels get out of control. That's why diabetics shoot insulin.

Dr. Jonathan B. Jaspan, an internist, endocrinologist, and director of the Clinical Research Center at the University of Chicago Medical Center, says when a diabetic receives only a kidney transplant, the new kidney may become damaged over time and fail because the diabetic condition has not changed. But when a pancreas is transplanted with a kidney, insulin injections and special diets are no longer necessary and the complications associated with diabetes--such as kidney failure--are halted.

A small number of diabetics across the country have received pancreas transplants before serious complications have set in. But pancreas transplants are still considered experimental, and the effects of such operations are being studied closely.

Brooks, now 50, has had diabetes since she was 17. "I was constantly running to the bathroom, and I was always thirsty," she said. "My mother took me to the doctor, and he knew right away--after seeing my blotchy complexion and blood in my urine--that I had diabetes. He started me on insulin shots, and I've been on them ever since."

At first Brooks was squeamish, and her mother shot her with insulin. But after a week Brooks began doing it herself. She also began eating differently: no sugar and hardly any fat. "That was really hard," she said. "Everyone else was going out for hamburgers and milk shakes and I couldn't." Things went well for three years. Then one day she woke up in the hospital.

Brooks was 20 and had just moved to California with a girlfriend. They were going out a lot and meeting new people. Life was exciting, and Brooks was feeling good--so she went off her diet. "We were only there six months," she said. "Then something happened. I guess I had been eating the wrong foods for a while and I went into a comalike state. I remember waking up while I was being wheeled into the hospital and there were tubes all over me. My stomach was pumped and I stayed in the hospital for two weeks."

When Brooks got out of the hospital, she went back home to Mississippi. A year later, in 1961, she moved to Chicago with another girlfriend. But this time she watched her diet. Brooks had been living in Chicago for a little more than a year when her new doctor increased her insulin dosage. The dosage was too high, and she slipped into another coma. This time she was hospitalized at Wesley Memorial (now Northwestern Memorial) for a month while her doctors tried to regulate her blood sugar levels and insulin intake.

In 1963 Brooks got married. Three years later she was pregnant. During her sixth month of pregnancy she was hospitalized for high blood pressure, another common complication of diabetes. In her eighth month labor was induced, and Brooks had a healthy baby boy.

Eleven years later she and her husband split, and in 1983 she began living with her current boyfriend, Larry Fedrick. Brooks was working in the office of a laundry supply company and was feeling fine. But in 1985 her kidneys began to give out.

"I was coming home from work very tired," Brooks said. "I went to the doctor and he sent me to a heart specialist who put me in intensive care. The heart specialist told me my heart wasn't that bad, but he told me my kidneys were failing and that I'd have to go on dialysis in about a year and a half.

"After that, I really started slowing down. I couldn't walk, and I had to sleep sitting up because I couldn't breathe laying down. I went back to my doctor and he sent me to a kidney specialist at Michael Reese. The specialist put me on hemodialysis right away. I had to go every other day, and I would get sick and pass out a lot. I'd also get terrible headaches."

So Brooks decided to switch to peritoneal dialysis instead: a tube was inserted into her stomach, and through it 12 bottles of glucose solution were successively emptied, left there for 30 minutes, and drained, removing from Brooks's blood the impurities her kidneys no longer filtered out. This procedure, too, was performed every other day.

But Brooks was tired of hospitals and wanted to go back to work. "There was a new program where you could do it yourself, so I decided to try that." Instead of going through 12 bottles of fluid every other day, she used four bags every day. A tube approximately three and a half inches long hung from her side. She would hook a bag of solution to it, empty the liquid into her stomach, clamp the tube shut, roll the bag up, tape it to her side, and hold the solution in for four hours. Then she would unroll the bag, open the clamp, drain the fluid into the bag, dispose of it, and start all over again. She followed the procedure at home and at work.

"I did that for about four months," Brooks said. "And I just couldn't take it anymore. I was constantly having problems with my stomach. It'd swell up and I'd get cramps so bad. Sometimes I'd put the solution in and it wouldn't come out. I was in the hospital every week. So I went back on hemodialysis."

At first the hemodialysis needles were stuck into the veins near Brooks's chest bones, because the veins in her arm were too narrow and clotted. She had an operation to clear the scar tissue from those veins, expand them, and connect them directly to main arteries; then the doctors began sticking her arms again. But by last year her veins were again blocked; she had another vein-opening operation--this time a balloonlike device was inserted into her veins and inflated--and then continued with dialysis.

"Work was just too much of a hassle," Brooks said. She quit her job and went on social security disability.

"When my doctors at Michael Reese told me I was a good candidate for a dual transplant, I decided to try for both," she said. "Then my doctors gave my name to the University of Chicago."

Brooks checked into the University of Chicago Medical Center for about two days and went through a battery of tests. She got a blood test and an AIDS test. She stuck her hands and feet in ice so her nerves could be tested. Chunks of tissue were removed as samples from her arms and legs. "I was exhausted," she said.

When the test results came back, Brooks was told that everything was fine and she was put on the transplant waiting list. She didn't think she'd still be waiting two years later.

At first her placement on the list was low because she was trying to obtain state funding for the pancreas operation. Because pancreas transplants are still considered experimental, Medicare only pays for the kidney part of the transplant. And the University of Chicago requires that $20,000 toward the operation be paid within the first seven days after a pancreas transplant. A dual transplant usually costs between $50,000 and $70,000. A pancreas makes up $20,000 to $30,000 of that bill, and Brooks didn't have the money.

But she got lucky. "Rose got funding through the Illinois Experimental Transplantation Program," said Linda Woodle, a registered nurse and Brooks's transplant coordinator. "It gives out approximately $900,000 each year. Rose is eligible for $200,000 of it." Her name moved higher on the list.

Medicare has covered 80 percent of Brooks's medical expenses since her kidney failure was diagnosed; hemodialysis alone costs about $1,700 a month. The health insurance provided by Brooks's former employer picked up the remaining 20 percent for a year and a half. Then Brooks began paying $118 every two months for supplementary insurance. This $118 comes out of the $554 social security check Brooks receives each month and a measly $20-a-month disability check from her former employer.

"Thank God for Larry," she said. "He's been so good to me. He takes care of me, looks after me. He's everything to me. I know my husband couldn't have stuck by me through all this."

Larry Fedrick, 53, had watched Brooks's condition steadily worsen over the four years they'd lived together. When her kidneys failed in 1987, he took her on as his full responsibility.

"Larry's there whenever I need him," Brooks said. "He takes my blood pressure, checks my blood sugar levels. He's carried me in his arms to the hospital. You just can't beat him. My son comes around about every two weeks, and I talk to him a lot on the phone. But Larry stays here and takes care of me."

"You do what you have to do if you're concerned about a person," Fedrick said. "I always check home and see how Rose is doing. If she's having a bad day, I cut my day short and come home.

"I own and operate my own truck," he continued. "I used to take longer runs before. Now I try to stay within 100 to 150 miles of my home so I can get back if anything happens. There are some weeks I miss a lot of work. But if she can afford to be sick, I can afford to help her."

Because Brooks's blood pressure constantly fluctuates and she tires easily--she can't walk half a block without getting winded and having to rest--a state-funded rehabilitation program provides her with a housekeeper three times a week, and a CTA Special Services vehicle takes her to and from dialysis.

Sitting at the kitchen table in her small south-side apartment, her voice even and flat, Brooks said, "I go to dialysis Monday, Wednesday, and Friday. That's my job. I leave home around 9:30, 10 AM, go on dialysis for three hours, and get home around 4:30 or 5. I spend almost all of my time at home or on dialysis. I used to love to dance, but I can't do that anymore. I used to love to go shopping, but I can't really do that anymore either. I go to church once in a while and watch Larry bowl on Sundays, but that's about it."

When her pancreas-transplant funding was approved in early 1989, Brooks thought surgery was just around the corner. But since then the waiting has just gotten worse. For the past year and a half she has been afraid to go anywhere for fear a kidney and a pancreas will become available while she is gone.

There are a few places she'd like to go. She'd like to visit her ailing 73- year-old mother in Mississippi. She would like to go to New Orleans, where other relatives live. She would like to go to her high school reunion. She could make out-of-town dialysis arrangements--two months in advance. But she won't. "I'm afraid I'll blow my chance if I go away."

Part of the reason Brooks's wait continues is that she has type O blood, Woodle said. There aren't many type O organs available. And the longer a person is on dialysis, the harder that person's blood is to match. So Brooks continues to pray for a phone call telling her to get ready for a seven-hour operation--three hours to transplant the kidney, four for the pancreas--with no guarantees.

The operation would not remove Brooks's damaged organs. The new organs would be transplanted on either side of her groin area and attached to main arteries that feed blood into her legs, an easy area to get at in case of rejection.

"About 95 percent of the patients who receive kidney and pancreas transplants have at least one rejection episode," Jaspan said. "This does not mean the organ or organs are necessarily useless; it means that more medication or another operation is required." Of the kidneys transplanted alone at the University of Chicago Medical Center, 80 to 85 percent are successful during the first year, Jaspan said. Dual transplants are relatively new. Thirty-eight have been performed at the center since February 1987. Of these 38, 82 percent of the pancreases and 100 percent of the kidneys were working fine one year following the operation without further surgery (results aren't formally tracked after the first year).

But even if Brooks gets a kidney-and-pancreas transplant, she'll be on medication for life, on drugs that prevent transplanted organs from being rejected by weakening the immune system and making it less effective in fighting infections. They can also damage the kidneys, and they're very expensive. Cyclosporine, one of the newest and most effective, can cost between $7,000 and $10,000 for the first year's supply--and Medicare only covers the first year. After that, the dosage is slowly decreased and other, less costly drugs are used in conjunction.

Even with the drugs there is always a chance an organ will be rejected. And there is always a chance of death. But Brooks is willing to take her chances.

"You never know if it's going to work, or for how long," she said. "But I want to try. A lady at dialysis had a transplant that failed after five years. But she said she's going back on that waiting list because it's worth it."

"I watch the news every night and see people shooting each other and dropping like flies. Can't one die with a good liver and give it to me?"

Gary Isenogle brought the footrest of his reclining chair up, put his bearded chin in his hand, and stared at the wall opposite him. "Hospitals can't take a liver without asking the family, and people really don't give a damn about you, about me. They just don't give a damn. I read an article that lawyers want to put organs up for sale and are checking into what's legal now. They want to keep people alive based on their ability to pay." Isenogle shook his head and rubbed his beard. "I don't want to die."

But Isenogle will die if he doesn't get a new liver.

Up until two years ago, Isenogle, now 50, lived in the fast lane. He raced motorcycles, he raced cars, he raced high-performance boats--and he had been hitting the bottle since he was 15. For the most part he enjoyed good health, but there was no filling him up when he drank. He started every day with an alcoholic beverage, and he'd polish off a fifth of whiskey by evening's end. The water department in Naperville, Isenogle's employer for 20 years, demoted him from supervisor to water supply operator because of it. (Ironically, his new position was a union job that paid more.)

Then in 1988 big problems started developing. His stomach became upset frequently. When he ate a steak, he felt like it was sitting there for days. He went to his doctor, who didn't run any tests and told him he just had some kind of digestive ailment. Soon after, he started noticing bruises all over his body.

"Blood was running out of where it didn't belong, and I was a nice shade of yellow," Isenogle said. "I went to another doctor and he told me to get a blood workup at the hospital. The doctor knew the mess I was in, and he knew I was an alcoholic. When I got to the hospital, the troops were waiting to check me into the alcohol treatment center."

After spending the month of May in detox, Isenogle kicked his habit cold turkey. "When I'm done with something, I'm done with it," he said. "That's the way I am." Clean and sober, Isenogle thought his troubles were over. He went home, and instead of hitting the bottle he hit the water faucet.

But something weird happened: Isenogle found that he was no longer able to urinate, and his body blew up. "I went from a 34-inch waist to a 51-inch waist, and went from 185 pounds to 240 in three months." His body ached terribly, and he went back to the doctor, who this time diagnosed cirrhosis of the liver. Isenogle's liver had hardened, losing its ability to pass blood and get rid of impurities. His kidneys had temporarily shut down as well.

Isenogle was hospitalized and his liquid intake restricted to less than a quart of water a day. He was also given a diuretic, and doctors removed some of the fluid he had retained through his abdomen, using a large needle.

"The needle was almost as wide as a pencil and about a foot long," Isenogle said. "They stuck it in right below my navel." A hose connected the needle to a bag, and bag after bag was filled. Isenogle said he just lay there and watched his stomach going down. "It was a great relief."

It took three weeks for Isenogle to get down to his normal weight. Then his doctors put him on a restricted diet and discharged him.

In November '89, Isenogle and his wife, Rita, decided to go to Florida. He wasn't feeling well when they left for the airport, and he felt even worse when they landed.

"We stayed in a hotel near Disney World and went there the next day," he said. "When we left [the park], I couldn't remember where I parked the car. We found it by accident. But then I couldn't find the hotel. We ended up driving for hours before I found it.

"A couple of days later, we drove to Orlando, and on the way back I couldn't keep the car down the center of the road," Isenogle said. "Cars were honking at me and I was going all over the expressway at 40 miles an hour. But in my mind, I thought I was fine."

Rita, who was sitting in the passenger's seat, was scared. "He was like that the whole vacation," she said. "We went to visit some friends of mine, and he kept falling asleep. When we got home, he went to the hospital."

It turned out Isenogle had had an attack of encephalopathy. He had gone off his diet, and his liver had responded by shooting off gases that made him feel drunk. People with encephalopathy are easily disoriented: their brains will just wander in the middle of conversations, and eventually they can't even write their own names. Some lapse into comas, some never regaining their lucidity.

Isenogle's doctor kept him in the hospital for observation, and discharged him about three weeks later, when he appeared to be better.

Then, in January of this year, all hell broke loose. Isenogle puffed up with water again--a condition called ascites--and he had another attack of encephalopathy. He went back into the hospital. When his doctor pierced his stomach with the needle pump, Isenogle began bleeding internally, and his doctor couldn't find the source.

"They were pumping bags of blood and plasma into me," he said. "My blood count got really bad and they would stabilize it, but then it would mess up again.

"All the blood and fluid they were pumping into me was staying," he continued. "I was so full, I couldn't even open my eyes. It hurt so bad. It felt like someone put a hose in my ear and said 'run it till it bursts.' It was like that for two weeks. Then another doctor looked at me and gave me a shot of vitamin K. I don't know what happened, but the internal bleeding stopped and the swelling went down."

During this time, a liver specialist came to see Isenogle. He told him he had been looking at his records and said he was a prime candidate for a transplant. Isenogle had been going to Copley Memorial Hospital in Aurora, which is not set up for liver transplants, so he was referred to Dr. Alfred L. Baker, a liver specialist at the University of Chicago Medical Center.

In early February Baker gave Isenogle a battery of physical and psychological tests. "I couldn't figure out what a lot of the [psychological] tests were for," Isenogle said, but he thinks he knows now. "I have a tendency to take things lightly once in a while, and once, while Dr. Baker was asking me all these questions, I said I hoped I got a new liver soon because it took me 50 years to wreck this one, and if I got a new one, I would just about have it wrecked by the time my time is up. I was joking, but Dr. Baker didn't laugh."

Transplant candidates are subjected to psychological examinations because of the short supply of livers, Baker said. He wants to make sure an organ will not be wasted on someone bent on returning to destructive habits. Isenogle has been sober since June '88 and does not plan to drink again, so he was put on the waiting list. But had he continued drinking, he would never have made it.

Isenogle was told to recuperate from his latest bout with ascites before going back on the job. Instead, even though he was experiencing symptoms of encephalopathy, he waited less than a week and then reported for work one morning.

"I shouldn't have gone in," he admitted. "I was in a bad way. [My coworkers] saw that I was a mess and kept watching me and asking me questions I couldn't answer. My job is such that I get in a truck and I'm gone all day. I do a lot of maintenance work keeping pumps and electricity going. I work a lot with high voltage, and they can't afford to have me stumbling around."

So when lunchtime rolled around, Isenogle dropped off his truck and went home. He walked into the family room and sat in his reclining chair. "He just sat there," Rita said, "for the next 24 hours." She called the doctor, and Isenogle wound up spending the night at Copley for observation. Before he came back home, the doctor told him he couldn't drive.

For the next three weeks, Isenogle just sat around the house and rested. Many mornings he couldn't get out of bed. When he could, he would sometimes just sit in his reclining chair until it was time to go back to bed.

"It was really hard on me when that happened," Rita said. "He had always worked, and I just felt like that was the end."

But Rita had been feeling strained for quite a while. She and her husband had just purchased a house when he first became ill, and while he was being treated for alcoholism, she moved into the house alone. Then when Isenogle's cirrhosis was diagnosed, Rita said, he got very cranky and hard to deal with. She had to make him low-sodium, low-fat, low-protein meals and was "forced into the role of mother."

"I'm not a house person," she said. "I sell real estate and play tennis. In the beginning, I had to constantly watch him and what he was eating. But I don't think he's dumb enough to eat popcorn and potato chips anymore."

After sitting around for three weeks, Isenogle went back to work in April with a letter from Baker. It wasn't easy; the water department was afraid to let him come back, Rita said. It took many phone calls--and a fax from Baker--to get Isenogle his job back.

Isenogle has been working ever since. He also visits the University of Chicago regularly for tests. "I get cynical as hell sometimes and feel sorry for myself. I know it's rough on my wife, but I'm sick now and I can't run my life the way I want to.

"The doctors also stress that a transplant is a gamble," he continued. "There is a 25 to 30 percent chance I could die. I talked to Dr. Baker about it and he said you can take that 30 percent chance, or you can take a 100 percent chance of dying later. My symptoms will keep getting closer together and more severe.

"Just waiting around for the transplant gets me so mad," Isenogle said. "I was told it would take six months to a year to get one--and that's based on how I feel." As it stands, Isenogle is low on the list. But if he got very sick, he would be moved to the top. It's a catch-22, Rita said. At the same time she makes him eat right and keeps him out of the hospital, she is also preventing him from getting his transplant.

A transplanted liver has to be almost the same size and weight as the recipient's organ, Baker said. Although blood types don't have to match, it is preferable. A liver can last no more than 18 hours outside a human body. If a donor is brain dead and his or her bodily functions are still working, the organ can stay in the body a couple of days before it has to be taken out.

A person called in for a liver transplant can expect to spend an average of eight to nine hours on the operating table, although some livers have taken 20 hours to transplant. During the seven to ten days following the operation, myriad complications can develop: bleeding, kidney failure, and infection, to name a few. Organ rejection is common. Within the first two weeks of a transplant, 80 percent of the patients experience mild rejections, while 10 to 15 percent experience severe ones. About 20 percent of patients need to be retransplanted.

The typical charge for a liver transplant at the University of Chicago is between $150,000 and $350,000, but a complicated case that involves an extended hospital stay or retransplantation can far exceed that. Even if everything goes well, a liver transplant recipient--like a kidney and pancreas recipient--will have to stay on immunosuppressive drugs for the rest of his or her life to prevent the new organ from being rejected.

"It comes and goes," Isenogle said, "but, basically, I'm ready for the transplant. Sometimes I get scared, but then I think of what I'm doing now and the things I want to do. What I'm doing now is existing, and a transplant should promise a normal life."

One of Isenogle's favorite pastimes was restoring old cars. He thinks all the spray paint and solvents he worked with over the years contributed to his cirrhosis, given the link between spray paint fumes and liver diseases. Now, of course, he can't work on cars at all. His hands get cramped, and sometimes he has no feeling in his fingers.

So Isenogle's life is pretty much at a standstill. Every time the phone rings, he hopes it's someone from the University of Chicago telling him to come to the hospital ASAP, that they've found a liver for him.

Richard Jackson, 64, has always been a voracious reader. "I read almost everything," he said. "I get up at 4:30, 5 AM and read the Tribune and the New York Times cover to cover. I read in the bathroom, and I have a stand so I can read standing up while I'm getting ready in the morning." As the senior vice president of the Great Lakes Terminal & Transport Corporation, he reads a lot of business journals as well. And in his spare time, he manages to rip through three books a week--he is currently reading a biography of Oscar Wilde, in addition to all of Wilde's works--plus volumes of magazines on topics that range from fine wine to garbage.

"I try not to waste a minute of my time," Jackson said. "Time is very valuable. My mind is always out there. I'm curious."

Jackson has congestive heart failure, and for the past several years he's been reading a lot about heart transplants. Somewhere in the stacks of magazines that fill his house is an article on heart transplants in New York magazine and several copies of the Journal of Transplantation, a highly technical trade publication, which he subscribes to "not to look over doctors' shoulders, but so I can ask them questions and keep informed."

Judging from what he's read, Jackson has categorized people waiting for transplants into three groups. The first group is made up of people like him: active and working. The second group contains people who are noticeably sicker--people who are in the hospital more often than out. And the third group consists of people who are in bad, bad shape, some who have only 24 hours left to live.

The people in the third group get hearts first, Jackson said, and the people in the first group get them last. No one disputes this order. But a doctor at UCLA conducted a study in which he tested people who were, like Jackson, active and working and waiting for a new heart. After a year or so, he went back to interview them again and found that most of them had dropped dead.

"Frankly, I don't think I'll ever get one," Jackson said. "I will be 65 next April, and when you get to be that age, other things happen to you. I had a good life. I was very fortunate. And I feel that maybe someone younger needs it more."

Over the course of his illness, Jackson has come to view its progression as an adventure, an adventure he says he's privileged to experience.

He grew up in the Chicago area. After high school, he joined the Navy and became a naval aviator. He flew in the Berlin airlift and lived in Shanghai for a while. When he came back, he married his childhood sweetheart, went through the business program at Northwestern University, got a good job, and went back to get his master's degree.

Over the years Jackson and his wife had six children, and his business career moved them around quite a bit. They were living in Saint Charles when Jackson had his first heart attack in November '71. This set him back only briefly, and it wasn't until 1985 that he got sick again.

This time Jackson and his family were living in Denver, and his company had just asked him to move back to Illinois. It was late February or early March, and Jackson wasn't feeling well.

"When we moved here from Denver, it was very cold," Jackson said. "We did a lot of packing, and I have an awful lot of books. Books are heavy." He also packed them so the boxes weighed about 50 pounds each. "I was lifting and pushing a lot of weight up high. I think it got to me because of the coldness."

By the time they got to their new house in Hinsdale, Jackson couldn't sleep lying down, a symptom of congestive heart disease; he slept sitting up so gravity could work with his heart instead of against it. He went to Good Samaritan Hospital in Downers Grove, and after running some tests his doctor told him his heart was operating at less than 30 percent efficiency. He then told Jackson to get a second opinion.

Jackson went to see Dr. Rolf Gunnar, chairman of medicine at Loyola University Medical Center in Maywood. He had known Gunnar as a boy, and Gunnar's father had been his childhood physician. Gunnar told Jackson he had congestive heart failure and that his heart muscles were deteriorating. "I was diagnosed with terminal heart disease," Jackson said. "But they didn't call it that. They called it "end stage' to make me feel better."

Gunnar checked Jackson into the hospital right away and ran him through a week's worth of tests. He decided against transplantation at first, opting to treat Jackson's condition with medication. Jackson started going to the hospital regularly to have the pressure in his heart valves and arteries tested--a procedure he still endures today. Doctors use a Swan-Ganz catheter--injected into Jackson's heart by sticking a needle in his neck--to test the pressure on his heart from the blood and fluids being pumped through it. "They also measure the pressure in my lungs because my heart is not efficient and pressure builds." If Jackson gets a new heart and the pressure in both areas is too great, the heart will explode.

During these visits, his doctors kept altering his medication and putting restrictions on his diet and activities. These measures gradually made his heart more efficient. He brought his weight down from 185 to 137 pounds. "I have the advantage of being born with a positive attitude, and I can follow a strict regimen, I think, because of my military background."

In summer 1986 Jackson almost passed out at work. "I became very faint, and knew I had a problem," he said. He called the fire depart

ment, and an ambulance was sent over. The paramedics gave him oxygen and said they were taking him to Northwestern. "I told them they had to take me to Loyola," Jackson said. "But they told me I didn't have that much time." When he got to the hospital, he was rushed into surgery and given a pacemaker. Three months later, he was on Loyola's waiting list for a heart.

"When Gunnar said I should consider a heart transplant, it blew the wind out of my sails," Jackson said. "It was so final." Then Gunnar told him to see the director of cardiac transplant at Loyola: Dr. Maria Rosa Costanzo-Nordin.

Before going to see Nordin, Jackson--the nonstop reader--decided to write a paper covering the pros and cons of a transplant. It took him two weeks, and Jackson ended up calling it "Why I Want a Transplant." He was looking up. "Up to that time, the longest a person waited on the list was just under a year. Almost everyone else got one in three to five months. I thought it was a foregone conclusion I would get a heart."

So Jackson met Nordin and was checked into the hospital for a week of tests. During that week, he was introduced to a woman in her 30s who had had a transplant. "She was one of the few diabetics they had transplanted," Jackson said. "She was great with people, and I liked her a lot." At the end of the week, Jackson was on the list and discharged. But when he went back to the hospital for one of his regular checkups, he was told that the woman he had met was dead.

"When I found out she'd died, I bawled," Jackson said. "And I come from a family that told me to be a tough little soldier. At least she had a few more months with her children."

Jackson did well until April '87. Then his heart began beating strangely, and he called the paramedics. He was again taken to Northwestern, where he found out his heart was out of sync and the only thing keeping him going was his pacemaker. Jackson was sent to Loyola for a cardioversion, in which he died, technically, and was brought back.

"They stopped my heart, gave me a jolt with the paddles, and hoped to bring me back. They brought my heart back in rhythm and it's been that way ever since.

"What really impressed me was the anesthesiologist," he continued. "I heard him ask 'How long do you want him out?' The doctor said a minute, and I was out and in, bang bang. The only thing that bothered me was the burn marks," he said, and placed his hand on his chest. "Basically, I was electrocuted.

"My father died of a heart attack. So did my grandfather. Had the technology available today been there, they could have kept going too."

In August '87, Jackson almost bled to death. He had been taking heparin, a blood thinner that had to be injected. (Used to stop blood from clotting, heparin is frequently prescribed to heart patients.) "I was shooting myself in the stomach and wherever else," he said. But the injections and the medication gave him a bleeding ulcer. He was taken to Loyola, had his stomach pumped, and received a blood transfusion.

"They had to go into my stomach to look at the ulcer," he said. "I wrote a short four- or five-page paper on it called 'The Marquis de Sade Class.'" The paper was about doctors teaching interns how to explain the procedure to patients. "First you make the patient feel good," Jackson said, paraphrasing. "You say, 'All I want to do is look in your stomach with a tube that has glass at the end of it.' Then, and here's where you get them, you say, 'Oh, by the way, I have to stick it up through your nose.'"

Jackson did pretty well for the rest of the year. But for most of 1988, he didn't feel too good.

Jackson, married for 40 years, adored his wife, Mildred--and in September '88 she became very ill. It took him more than a month to persuade her to see a doctor. The doctor found a massive tumor on her right lung that was inoperable.

She was hospitalized for ten days. At the end, she was on oxygen, in a wheelchair, and begging to come home.

"She was addicted to nicotine," Jackson said. "You take a person who smoked three packs of cigarettes a day for 42 years and make them go cold turkey, they can't handle it. She couldn't smoke in the hospital because of the oxygen--she'd blow the place up. When I got her home, she started smoking again and appeared to feel better." But that night, Mildred got ill and Jackson took her back to the hospital. At midnight, the doctors told him she was dying, and she passed away four hours later.

"I got on the phone with my four kids who still live in the area, and they came down to the hospital." Jackson's voice broke off, and he paused for a moment. "Then I just went downhill."

Jackson developed a bad cough and lost weight, and fluid built up in his lungs. "But I was squared away again, and was going along like crazy until about three months ago," he said. "I got the flu and gout." By the time he got to the emergency room, he'd started to feel better. "So I told the guy in the emergency room that I wanted to be discharged. I told him I had a doctor appointment coming up, and I wasn't feeling that sick anymore. I signed some papers and left, and I've felt great ever since. Now I'm looking for my next adventure." His next adventure, Jackson hopes, will include a new heart.

A transplant heart would have to weigh about the same as Jackson's and be of a compatible blood type; its donor can be only brain dead--the heart must still be pumping when it is removed. If a suitable heart were found for Jackson, the hospital with the potential donor would call Loyola. Loyola would get Jackson into the hospital as soon as possible, and in the meantime Loyola's procurement coordinator would be in touch with the donor hospital to find out what time the heart was to be removed.

Jackson would be prepped for surgery and taken to the operating room while the surgeon at the donor hospital inspected the just-removed organ. If it looked normal, Jackson would be opened up while the donor heart was in transit.

Jackson's heart would be left in place until the new heart arrived in the operating room. The new heart would be inspected again, and if found suitable, Jackson's heart would be cut out and replaced by the new one.

If Jackson's case were typical, he would be in the hospital for two weeks. But by the third or fourth day he would be up and walking around. After six or eight weeks he could drive a car, and within three or four months he could go back to work. It would be recommended that he stay on his low-fat, low-sodium diet, but other than that there would be no real restrictions on his activities.

The average cost of the operation and the two-week stay is about $50,000, and the cost for the first year's care is between $10,000 and $20,000, according to Nordin, Loyola's cardiac-transplant expert. That figure does not include the drugs that transplant recipients remain on for life.

Compared to other organ transplants, heart transplants are easy to check for signs of rejection, Nordin said. A needle is stuck into the recipient's neck through the jugular vein, which leads into the heart. A tube is passed through the needle, and a tonged instrument is inserted through the tube. The tongs grab four or five tissue samples from the heart, and these are tested for immune-system cells. If the cells are present, steps are taken to prevent rejection. At first these biopsies are taken every week, but their frequency drops as time passes.

Organ transplant recipients experience an average of 1.8 rejections during the first year. But heart transplant patients can't afford a rejection--and because of the high number of biopsies performed, it is rare when a heart recipient dies of rejection.

"At one year, the survival rate is 85 percent," Nordin said. "After four years, it is 78 percent. And after five years, it is 72 or 73 percent. The main problem with long-term survival is a chronic, subtle type of rejection that causes vessels in the heart to narrow."

To get on a transplant waiting list for any organ, the patient must be in near-perfect condition aside from the major problem. For the most part, people 66 and older do not get transplants.

So for now, Jackson, two years away from 66, goes to Loyola once a month for a checkup. "Everyone waiting in the office is either dying or married to someone who's dying," he said. "It's very dour. I like to talk to them and buck 'em up, but you can't put your philosophy on others." Jackson has moved out near Maywood to be closer to Loyola. But he knows nine out of ten people die waiting for a heart.

Statistics show there are far more healthy hearts available than the number donated. Five million people--that's 2 percent of the population--die each year, according to the Regional Organ Bank of Illinois, or ROBI, which matches donor organs with waiting patients. If 5 percent of those people have good hearts, that's 250,000 transplant hearts. But hospitals and organ banks have trouble meeting the national goal of 15,000 donors a year.

Dr. Frank Stuart, who helped start the kidney transplant program at the University of Chicago Medical Center, said that many of the people who die in hospital intensive-care units across the country have healthy organs that could be used, but 95 percent of them die with the body.

"Much of the problem has to do with hospitals and hospital personnel," he said. "The personnel need to get involved with families and ask their permission to use their relative's organs. It's hard, but they have to walk that extra mile. Some hospitals are great that way; some don't do anything. The University of Chicago's policy is to always ask family members for organs, but that doesn't always happen."

Stuart said that when asked, 60 percent of the next of kin give permission for their relative's organs to be removed. But there have also been times when family members refused permission even though the patient signed a donor card before he or she died. "Donor cards are legally binding," Stuart said. "But no physician is going to fly in the face of grieving relatives."

"In the U.S., the family has the last word," Nordin said. "In Europe, there is presumed consent. The family doesn't have jurisdiction, and anyone brain dead is considered a donor. Several surveys on this issue were taken in various states. Unfortunately, only 7 percent of the sample interviewed were in agreement with presumed consent.

"Today, the usual waiting time for an organ is 222 days," she continued. "But it is not unusual to wait over two years." In 1984, 84 to 100 new people nationwide went on transplant waiting lists each month. Now between 1,000 and 1,500 do. "Unfortunately, the number of donors has remained the same."

Part of the problem lies with the failure to report potential donors--or reports that are too late. Many neurosurgeons are reluctant to declare brain death because they do not want to admit defeat--or be sued.

But when a donor is reported, the information goes into the computer at the Regional Organ Bank of Illinois. The ROBI computer--along with other local organ-bank computers--is linked to a national computer that keeps track of who is waiting for transplants and what organs are available. The United Network for Organ Sharing divides the country into ten regions; Illinois is in region seven. Organs usually go to people living in the region where the organ is procured. But when necessary, organs are sent across the country.

As of September, according to ROBI, 20,188 people are waiting for organ transplants across the country, and the number increases each month. "It's hard to say, but about half of these people will get transplants," said Linda Lawson, secretary to ROBI's president. "The other half are likely to die."

Art accompanying story in printed newspaper (not available in this archive): photos/Paul L. Merideth.

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