LIVER TRANSPLANT STORY - PART 4

[Guest guest]

Questions of the heart -- and of medicine

December 30, 2001

BY CHRIS FUSCO STAFF REPORTER

A little more than a year earlier, Mark Mucha and I had stood in this same cemetery after singing at the funeral of our friend Patula's mom. Mark had no idea then that he was sick. Now, on this late March day, I was at Mark's funeral. The liver I gave him nearly four months ago had failed. A second transplant couldn't save him, either. More than 1,200 people--from our elementary school teachers to the clients at the bank where Mark worked--came to his wake. For hours, the line at the funeral home stretched out the door and around the corner of the building. At Mark's grave the next day, the Rev. O'Neill of St. Terrence Church in Alsip summoned us for final prayers. My wife and I were swept into different positions-- at the foot of the casket with Mark's wife, ; I, farther back, next to 's father, , who was holding Mark's 11-month-old son, . Everybody else cried, but Jake looked at me and smiled.

I kissed him on the cheek and held him with his grandpa. He stayed quiet during the service, oblivious to what was happening. After the prayers, I put my pallbearer gloves on the gray steel casket and hugged my parents, my wife and friends. Gerald Beeson, who was ready to give Mark part of his liver before several tests disqualified him, pointed at a statue near Mark's grave. Mark, who prided himself on his 100 percent Polish heritage, would be buried just feet from St. , patron saint of the Irish. ''If that's not Mark joking with us, I don't know what is,'' Gerald said, cracking a smile. *** I remember everything about that cool, sunny morning at Holy Sepulchre Cemetery. Those of us close to Mark have been trying to move on, but losing him still hurts deeply. , her in-laws and family are trying to put their lives back together. My wife is drained. Sometimes, she has nightmares about me dying, even though I've recovered from surgery. Jake, now 20 months old, and my son , who turns 1 on Monday, are the joys of our lives. But watching them play together sometimes reminds me that Mark won't be there when we go to ballgames together. An education fund for Jake got a boost from the Mark Mucha Memorial golf outing, organized by 's family, and a fund-raiser Mark's co-workers ran at a Clarendon Hills tavern. About $25,000 has been raised. And after a summer of uncertainty about Mark's $1 million-plus in medical bills, 's financial picture is becoming clearer. As of Friday, all but $28,800 had been paid, with insurance expected to cover most of that amount. Meanwhile, the safety of adult-to-adult live-donor liver transplants is being called into question. Three University of Chicago doctors fueled the debate in late May, when they wrote that the procedure "has been disseminated too quickly . . . and that inadequate data are being collected on outcomes for both recipients and donors." *** The day after Mark died, traded in both of their cars for a Ford Explorer and dumped his ''Mucha 72'' vanity plates. She and Jake moved out of their Orland Park town house right away and in with her parents. Within three weeks of the funeral, told us she wanted to spend "one more good night" at the town house. and I joined and a few other friends there. We found in their bedroom, sobbing. She had been organizing Mark's wardrobe and wanted to clean the house quickly so it could be put up for sale. ''I just want my life back,'' she said. ''Why did this have to happen to him? Why did this have to happen to Jake? It should have been me. He could have handled this better.'' Jen pulled out of the room and tried to calm her. I took over boxing up my friend's life. Every piece of clothing sparked memories. I recognized the shirts Mark wore when we went out to dinner with our wives, and the suits he wore to the bank. Then there was his athletic gear--golf shoes, softball spikes, old Marist High School football T-shirts and the Tom Waddle Bears jersey (No. 87) he wore to the Turkey Bowl--our annual Thanksgiving Day football game--just five months earlier. His dresser had dozens of religious statues, holy-water bottles and prayer cards, most of them gifts. He and pulled them out nightly when he was sick, asking God for more years together. A few weeks after that awful night, the town house sold. has had her share of good days and bad days since then. Though still grieving and wanting her old life back, she recognizes she has a life to lead and a son to raise. She recently bought a cute, three-bedroom brick house in a south suburb. Her brother moved in with her. She's back working part time as a speech pathologist but is considering taking a job with the transplant team at the University of Illinois at Chicago Medical Center, where Mark and I had our surgeries. Mark told her she'd be an asset to any transplant patient, judging by the way she managed his care. It hasn't been easy, but the rest of us are moving forward with her. , who supported my surgery during her pregnancy, feels cheated and angry about Mark's death. On days when isn't doing well, my wife talks to her often, listening to her every word. Sometimes, she cries when she gets off the phone. Still, she's a strong woman. I love her so much. Mark's mom, Alice Mucha, wonders what gave Mark cancer and how come it couldn't have been diagnosed sooner. "There isn't a day we don't talk about him," she said. "Life will never be the same." *** And me? I'm worried. Worried about , Jake and the Muchas. Worried about my wife. Worried about the impact this story is having on those I love. At the same time, I know tremendous good can come from others knowing about Mark. In late May, the University of Chicago doctors-- C. Cronin, J. Millis and Mark Siegler--published their article warning that too many adult-to-adult, live-donor liver transplants are being performed too quickly, and without proper oversight. "Many key aspects of liver transplantation in adults with the use of grafts from living donors remain unclear," they wrote in the New England Journal of Medicine. They cited "a lack of agreement" on the best surgical technique and said adult-to-adult live-donor liver transplants were happening at an "alarming" rate. Mark and I were among 267 such transplants in the United States last year, more than 10 times the total performed in 1998, according to the United Network for Organ Sharing. Two more donor deaths have been confirmed since Dr. Enrico Benedetti, UIC's transplant chief, first briefed us about the operation. That brings the total number to four worldwide, though the U. of C. doctors suspect there might be more. Since their article appeared, the U. of C. doctors also have learned that two donors in the United States required liver transplants within weeks after their surgeries. Both survived. In July, the National Institutes of Health announced it is creating a program to track donor and recipient outcomes of adult-to-adult, live-donor liver surgeries. "This information is needed to aid decisions made by physicians, patients and potential donors," the agency wrote. "Too few cases are performed at any one center, and approaches to the patient are too diverse . . ." Benedetti says there is "a very steep and very difficult learning curve" for the surgery, "regardless of the individual ability and experience of the surgeons." Since Mark's death, UIC has hired a new surgeon, Dr. Giuliano Testa, to perform live-donor liver transplants. Testa is one of only a few surgeons worldwide who has done more than 80 such transplants, Benedetti said. Benedetti agrees with the U. of C. doctors that standards for screening donors and performing the surgery need to be established. I hope this story helps make that a reality. I also hope it will inspire more people to become organ donors, for despite years of public service campaigns, there are nowhere near enough cadaver organs to go around. Last year, 1,650 people on U.S. waiting lists for liver transplants died. In 1999, 1,782 people died. Our transplant gave Mark his best shot at life. And even in cases like ours where things go wrong, recipients still survive. In an Arizona case at the Mayo Clinic sdale, for example, a 30-year-old man lost the liver his 24-year-old brother gave him in March because of a blood-clotting problem. He survived an emergency second transplant the next month from a cadaver. The liver transplant team at Northwestern Memorial Hospital has performed 15 adult-to-adult, live-donor surgeries since August 1999, said Dr. Abecassis, its director. All of its donors recovered completely, he said, and 13 of the 15 recipients are alive. Though the outcome wasn't the same for Mark, I don't regret doing the transplant. Neither does . Mark had a choice: fight or die. He chose to fight. *** When Mark and I discussed my writing about our surgeries, we envisioned there would be a photo of us holding our children that would appear with the final chapter. At Mark's funeral mass, I thought a lot about what that picture would have looked like, as our friend Kantz read the eulogy. and I wrote it together, with help from , family and friends. He read it in a strong, steady voice: All of us here have a connection to Mark. To some, he is the consummate business professional who works hard, charms clients, manages accounts and has perhaps the longest voice-mail greeting of anyone in the banking world. To others, he is the incoming chamber of commerce president--so dedicated that he convinces his wife to dress up as Mrs. Claus at the group's Clarendon Hills holiday celebration. He also is an athlete. He remembers every second he was on the football field in high school and plays Sunday softball as if the World Series is on the line. His favorite holiday is Thanksgiving, not because of the pilgrims or turkey, but because of the 10 a.m. football game that, by the way, will again be touch, not tackle, this year. That's only the beginning of what makes Mark extraordinary. His voice should be trademarked, as it has entertained thousands of people in church, the theater and at parties, bars and festivals with the rock band Nothin' Else. His sense of humor always shows through, whether he's playing Father Pat's straight man at the end of Sunday mass, or telling a corny joke. His accomplishments are too many to list, but here are just a few: first place in the Lincoln Speaks contest in School District 126; All-Star catcher in Little League; football team captain; nominee for the Marist Faculty Award, the school's highest honor; magna cum laude college graduate. Mark's dad, Ed Mucha, describes him as the glue that holds the family together. His mother, Alice, says he's the only person that can really keep his brother, Matt, and sister, Sandi, in line. As for Sandi and Matt, they have more Mark stories than Mark has jokes. One of the best is the time Mark didn't believe a person's tongue would stick to a metal post in freezing weather like in that scene from the movie "A Christmas Story." Mark was so sure he was right that he bet Matt his tongue wouldn't stick to the basketball post along the Mucha family driveway. Keep in mind, Mark was a working professional when he made this bet. Pieces of his tongue still are on that post, and Matt became a few bucks richer that day. There's no doubt that many of us, especially , have seen Mark's stubborn side. But it is his unwillingness to stop fighting for what he believes in that makes him a great colleague, friend, brother, son, husband and father. , rest assured Mark could not be the man he is without you. Look at all the things you shared: *Playing opposite each other in the Mother McAuley production of ''Carousel'' in 1989 and continuing to sing together, whether at a wedding or around the town house. *Attending St. Xavier together, both graduating in 1994, and going on to successful careers. *Getting married in front of friends and family. *Drinking too many Red Stripes and pina coladas on your honeymoon in Jamaica. *And, most of all, the birth of , who seems to have gotten the best of both of your gene pools. He appears on track to grow beyond Mark's 5 feet 8 inches tall, thereby assuring him a college football scholarship and first-round selection in the NFL draft. In all seriousness, Mark's becoming a father was the most wonderful part of his life. Equally important was that he realized he led a wonderful life long before he was diagnosed with cancer. Falling asleep with at night and waking up with Jake in the middle of it, he told many of us, were among the things he cherished most. Many of us left this same church last year inspired when Mark told us ''with a sense of humor, we're all going to get through this''--the ''this'' being his battle with cancer. He continued to inspire us as he went through nearly a dozen surgeries between then and now. Mark also said his illness taught him not to sweat the small stuff. When those close to him would snap over trivial things, he would tell them ''to be the better person'' and let go of whatever the issue is. Even in times when he was in great pain, he still managed to thank any doctor, nurse or visitor that helped or came to see him. He never stopped being concerned about the strain his illness was putting on , his parents, siblings, in-laws and friends. Most important, Mark realized was at his side supporting him and regularly told her he loved her. And when wasn't around, he told others he loved her, too. If Mark were here in person now, you can bet he would take the podium with a joke, something like: ''Three guys walk into a bar, one ducks.'' And after a good laugh, he would agree with us that this whole situation is terribly unfair. To us. But not to him. Mark, as Father Pat attested to in his homily at Mark and 's wedding, is a man of strong faith. He kept fighting to stay here with us, but, for a reason we can't understand, he's now with God. And that means he's probably splitting up this year's Turkey Bowl teams with advice from Walter Payton, Piccolo and Papa Bear Halas. Mark is in the place that we, as believers, hope we someday will go. And while that's of little solace to us today, it's something Mark hopes we can understand over time. He wants us to move on and be better people. We're already better people for knowing him. *** Someday, I hope Mark Mucha and Fusco will read this story. I can't guarantee they'll be friends like their fathers, but there's something I want them to know. I miss Jake's dad every day. I always will.