PART 1 - A LIVER TRANSPLANT STORY

[Guest guest]

This story was sent to me from Pam (Quantell's Mom) she asked that I forward it on to the group members. It is a 3 part story.

PART 1: "My friends are going to save my Life."

December 26, 2001

By Fusco Staff Reporter

Mark Mucha, my friend since childhood, wanted to tell me in person. It didn’t matter that I was coming home from Los Angeles, or that he lived an hour away and needed to find a sitter for his 4-month-old son, . Shortly before midnight, he was in my living room. His wife, , and one of our good friends, Kantz, were with him. ‘‘I’ve got cancer,’’ Mark said. “It’s in my liver.” I just looked at him, stunned. ‘‘Right now, I feel fine. I can go to work and take care of Jake,’’ he continued. “But I’m not going to lie to you, this is pretty serious. I could die.’’ The best-case scenario, Mark said, was that he would be eligible for a liver transplant, possibly from a live donor. Family and friends—including and I—could qualify for the job, but Mark didn’t want us to get ahead of ourselves. Still, he knew he would need our support. ‘‘I’ve always been the type of person who never asks for help,’’ he said. ‘‘I don’t like doing it now, but I’m smart enough to know I’m going to need it.’’ It was Aug. 18, 2000. Less than a month earlier, Mark had turned 28. I had known him for 19 of those years.

Mark Mucha (pronounced MOO-hah) and I grew up in Alsip. I lived at 11621 S. Keeler. He moved to 4519 W. Howdy Lane in the fourth grade. Until high school, our world extended from 115th Street to the north to 123rd Street to the south, Pulaski Road to the east and Cicero Avenue to the west. We spent most of our free time with our friends Patula and Jim . Among the four of us, we had all the bases covered: Jim and Mark had swimming pools, I had a basketball hoop, and had one of the neighborhood's first TI-994A computers. We played Little League, Wiffle Ball and fast-pitch. Mark's front yard served as the middle third of our Nerf football field. My driveway basketball court was the place to be on summer days because the Pietrzak sisters sunbathed just two doors down. Mark and I were friends but also competitors. We glared at each other during gym-class games and competed for speech-contest titles, citizenship awards and lead roles in Stony Creek Drama Club plays. Mark usually was the hero, I the villain. We played in the band, too.

Coming Thursday

The surgery, and a sense of hope

The liver transplant occurs, and things look good at first. Complications develop, but everyone stays hopeful -- and then a baby comes into the world.

Email us: Send comments to cfusco@... or mail them to the Chicago Sun-Times, 401 N. Wabash, Chicago, IL 60611.

We were members of the National Junior Honor Society, which in seventh grade earned us a free trip to Great America. I made up excuses not to go, mostly because I was afraid of riding roller coasters. Mark not only talked me into the trip, but he had me on the Demon an hour after we got off the bus. In eighth grade, we had our first and only fistfight. It had to do with Mark's popularity with the girls and my jealousy over that. The entertainment value of two good friends duking it out drew at least half of Prairie Junior High to Park to watch. I threw the first punch, knowing it would be the only one I'd land. Mark, a future high school football captain, gave me a pummeling, but it didn't go to his head. An hour afterward, we were on the phone apologizing and marveling at the number of kids who watched us. ''A great PR move,'' Mark said. We went to Marist High School, where four years in Mr. Manna's all-male marching band proved a rite of passage. We made more than a dozen other friends we still see regularly today, including , with whom Mark later formed a rock band, Nothin' Else. Mark's singing voice, good looks, sense of humor, acting talent and football jacket helped him land plenty of dates. As a freshman, he impressed us by taking out a junior from Mother McAuley, the all-girls' high school two miles north of Marist. As a sophomore, he dated another McAuley girl who was a Brother Rice cheerleader--not bad considering our school's rivalry with Rice. A McAuley girl named ended Mark's run as a ladies' man toward the end of our junior year. I'd like to think I helped get their relationship off to a good start. I met about an hour ahead of Mark at a party. We struck up a conversation and started dancing. Mark walked in at the precise moment I attempted to dip but dropped her. "Fusco, I know you know how to sweep a girl off her feet, but that's ridiculous," he said. Within a few weeks, he told me they had talked about marriage. They became inseparable, playing opposite each other in McAuley's production of ''Carousel,'' singing together at weddings and attending St. Xavier University. They married on April 5, 1997. Their son was born three years later, on April 23, 2000. I went on to marry my college newspaper boss, Barrell. We learned shortly after 's birth that we were expecting our first child. Mark was an assistant vice president with Old Kent Bank, running the Clarendon Hills branch; a speech pathologist, and Jen a book editor at Sourcebooks in Naperville. I would soon leave my reporting job at the Daily Herald to work for the Chicago Sun-Times. A trip to Los Angeles to cover the Democratic National Convention was my last Herald assignment. I came home to find Mark, and on my stoop in Winfield. I knew Mark hadn't been feeling well after being diagnosed with an ulcer about a year earlier. But then he started experiencing night sweats, and finally persuaded him to go back to the doctor. A blood test showed he had elevated liver enzymes, and several more tests led to the cancer diagnosis. Why he got the disease is inexplicable; he didn't smoke, rarely drank and regularly exercised. After the initial shock, Mark and resolved to lead their lives as normally as possible. That Sunday, Mark showed and me just how good he still felt by whipping us on the golf course. He kicked himself for losing to by only a stroke. *** ark's tests kicked off the next day. I hadn't planned on spending my week off between jobs at Rush-Presbyterian-St. Luke's Medical Center, but I wanted to help Mark and . was on her cell phone constantly, haggling with Mark's HMO, scheduling appointments. Mark walked around the hospital in good spirits, even though doctors were running him through MRI, CT and nuclear-medicine machines, and sticking scopes down his throat and up his you-know-where. Mark's doctors said they thought the cancer had a single ''primary site'' somewhere outside his liver. Everyone hoped that this week's tests would pin down that site, and that it would be somewhere surgeons could remove it. After that, Mark would need a liver transplant to make him cancer-free. Doctors didn't rule out the possibility of the cancer being contained to the liver. But the odds of that, we were told, were incredibly slim. Slimmer still were Mark's chances of getting a liver transplant from a cadaver. He wouldn't be eligible until his liver completely failed, and doctors worried he might die before then. Mark had a rough first day at the hospital on Aug. 21, 2000, when he went through a long MRI followed by a colonoscopy. The doctors made sure he had ample drugs so he would feel no pain, leaving him sort of punch drunk afterward. ''Hey, Fusc,'' he said to me outside the hospital. ''When I beat this, do you think we could write a book? ''I mean, c'mon. Not too many 28-year-old guys have cancer, right? And I bet even fewer of the ones that do have a kid.'' Even fewer, we'd later learn, would have five friends volunteer to have organ-donor surgery. *** our hours later, a sobered-up Mark took the podium at the end of a mass to pray for his recovery. It was at St. Terrence Catholic Church in Alsip, where as kids we had been altar boys. Even though he had moved to a town house in Orland Park, Mark went back to St. Terrence each Sunday to lead the congregation in song. accompanied him on piano and organ. More than 200 people came to mass that night, even though word about Mark's illness had just begun to get around. The Rev. O'Neill held back tears as he blessed Mark, and Jake. No one would have blamed Mark if he didn't feel like talking, but that wasn't his style. ''With your prayers, and a sense of humor, we're going to get through this,'' he assured everyone. My mother paged me the next day, as I was driving home from the hospital. She knew I had told Mark I would be a potential liver donor, and that thought scared her so much that she couldn't eat or sleep. ''If you do this, I would die. I would absolutely die,'' she said. ''You've got to think about and the baby.'' I loved my parents, Jim and Dorothy Fusco, but I didn't feel like reasoning with Mom now. ''I've never seen her like this,'' my dad said after taking the phone. I told him that no one, not even Mark's family, had been tested yet as a potential donor. We didn't even know if a transplant was possible ''You hear that, Dee,'' my dad told my mom. ''They don't even know yet.'' It didn't matter. My mom didn't want her only child--and the father of her future grandchild--in the donor pool. *** ark's first week of tests gave us hope. Even though we were told the chances of his cancer being contained in the liver were virtually nonexistent, all the tests so far showed that to be exactly the case. The final step to clear Mark for transplant would be a laparoscopy--a surgical procedure in which doctors would examine Mark's intestines and pancreas for cancer that previous tests might have missed. There was only one big problem. The surgeons at Rush-Presbyterian had never performed an adult-to-adult, live-donor liver transplant in their hospital, and they didn't want to start with Mark. But the neighboring University of Illinois at Chicago Medical Center had a live-liver transplant team, and several other hospitals nationwide performed the operations. and Mark didn't rule out seeking treatment outside Chicago. even faxed his records to the University of Colorado Hospital in Denver. But in the end, they chose UIC because the hospital's chief transplant surgeon, Dr. Enrico Benedetti, had a good reputation, and because it was close to home. Mark regretted the move at first. The UIC staff couldn't believe Mark's cancer had no primary site and wanted to repeat several of the tests performed at Rush, which would take several more weeks. This crushed Mark, who had prepared to have surgery sometime in September. Still, doctors took blood from Mark's younger brother, Matt, his father, Ed, and mother, Alice, to see if they could be potential liver donors. Mark's younger sister Sandi had been ruled out because of a previous health problem. The ideal donor would weigh about the same as Mark and be about his age or younger. Ed and Alice likely wouldn't qualify because they were in their 50s. Matt, 18, a former Mount Carmel High School football player, wanted to help Mark, but he didn't have Type ''O'' blood like his brother--a must to be a potential donor. Mark's immune system would attack an organ from another blood group, seeing it as foreign to his body. In mid-September, with Mark still undergoing tests but transplant surgery looking possible, Mark's family asked Benedetti to consider donors from outside the family. Fifteen friends and relatives volunteered. Nine had the right blood type. I was one. Benedetti met with the potential donors and their families on Sept. 26, 2000. was on a business trip, so I tape-recorded the meeting. Familiar faces lined the conference room, including , Father Pat from St. Terrence and , our friend from childhood. Also, there were two other friends from high school, Maurice McNulty and Gerald Beeson. Potential donors from 's family were her Uncle Mark and Aunt Lorraine Haberkorn and another uncle, Hugh McGivern. Benedetti, a soft-spoken, Italian-born man, sometimes was difficult to understand because of his accent. The first adult-to-child, live-donor liver transplant took place in 1989, he said, but the adult-to-adult surgery was newer. By the end of 1999, a few more than 300 such operations had been performed worldwide. Benedetti knew of only two donor deaths, one that resulted from the donor not being screened properly and the other because of surgical complications. Benedetti had performed five of the adult-to-adult transplants: two at UIC, two at the University of Minnesota Hospital and one in Germany. All five of the donors he worked on stayed in the hospital less than two weeks and recovered fully within two months. Four of the five recipients were still alive. The fifth, a 61-year-old woman, died of a heart attack at UIC after surgery. Benedetti called the transplant ''major surgery'' that usually lasts anywhere from three to five hours. He sketched it out on a dry-erase board. The incision, he said, would resemble the shape of the Mercedes-Benz logo, with the top cut coming just below the breastbone, and two more cuts fanning out diagonally. Once inside, doctors would remove the right lobe of the donor's liver--about 60 percent of the organ. They then would transplant it into Mark. Both livers would regenerate to normal size--about three pounds each--in about two months. Benedetti answered our questions. Yes, the donor eventually could drink beer again, eat normally and play sports. He gave us until Oct. 6 to decide if we wanted to continue as donors, hinting strongly that anyone in their upper 30s or older shouldn't bother because somebody Mark's age would be a better match. 's relatives and Father Pat followed his advice. Meanwhile, we got some good news. Mark's long-awaited laparoscopy took place Oct. 2. Doctors couldn't find any sign of cancer outside his liver and cleared him for transplant. The donor pool eventually shrunk to five of us--my four friends and me. We would meet again with Benedetti on Oct. 9. *** y mom's fears about the transplant continued, even though I kept her in the dark as much as possible. Going into detail didn't seem worth it because the odds of my being the donor looked slim. , Maurice, and Gerald all said they didn't want me in the hospital with our baby due on Jan. 17, 2001. My doing the surgery would be ''just stupid,'' seconded another friend, Jon Harmening, who had the wrong blood type to be a donor. Jen and I walked in to the Oct. 9 meeting hoping Benedetti would single out a couple of us for testing. Instead, he decided to have all five of us undergo MRI scans to see which of our anatomies best matched Mark's. ''Mr. Mucha is very lucky--I've never seen so many people come forward,'' Benedetti said. ''It speaks very well of him. . . . I have a good feeling about this case.'' That was the only good thing to come out of the meeting. We walked away with no idea about who might be the donor, and it would take until Oct. 30 for the hospital to finish all of our MRIs. Benedetti ruled out Maurice immediately, telling him preliminary tests showed his liver was not functioning well enough for him to be a transplant candidate. The tests from this point would be invasive and costly. Doctors would need to take liver tissue from any potential donor through a biopsy, in which a needle was inserted into the liver to pull out tissue. Then, there would be an angiogram to give doctors a better look at the blood supply to the liver and, finally, a series of heart tests. Benedetti planned to pick one donor to run through these paces. Mark's transplant coordinator promised to call all of us regardless. *** y pager went off as I was on the train on Nov. 3. Benedetti had picked Gerald. I let out a deep sigh of relief. A few minutes later, I felt a strange sense of emptiness; wasn't I good enough? I saw Mark later that day. ''I know I haven't complained much, but this whole thing sucks,'' he said. ''How am I ever going to pay Gerald back? How am I ever going to repay any of you?'' I told Mark he would do the same if we needed him. ''I'm sorry. This still sucks,'' he said. He only started to calm down after we began talking about the story he'd tell Jake one day. ''I guess it's going to be a great lesson for him,'' Mark said. ''It pays to have friends. Look at me. My friends are going to save my life.'' *** y dad and I had a long talk about Mark's illness a few days after Gerald was selected. He was glad to see me off the hook, but said he would have supported whatever decision I made. ''I know Mom had a fit,'' he said, ''but I think, in the end, she would have supported you.'' Only later would I learn that Gerald's family had reservations about him being a donor. 's family was concerned, too, as his mom, Sheila, had died just six months earlier from cancer. Mark didn't blame anybody's parents for being scared, especially my mother, who would scold me if I walked to school on cold days without wearing a hat. ''If this didn't happen, and Jake came to me 25 years from now and told me he was going to give somebody an organ, I'd tell him he's crazy,'' he said. ''That's your instinct as a parent.'' *** ennifer paged me Nov. 28 with the news. Gerald's biopsy showed his liver wasn't processing iron the way it should. The condition wasn't life-threatening, but he was out of the donor pool. would replace him. Benedetti planned to speed 's tests so the surgery could be done on Dec. 7. The shake-up caused the pre-Turkey Bowl party that night at Gerald's house to drag. But our annual Thanksgiving Day football game the next day let all of us forget about cancer for a few hours. Mark, who played defensive tackle at Marist despite being just 5-foot-8, 185 pounds, lived for football and loved our Turkey Bowl. The autographed Walter Payton jersey gave him was one of his prized possessions. He didn't show any signs of being sick; he was catching, throwing and intercepting passes, and arguing about whether so-and-so was out of bounds. 's family, while nervous about his undergoing surgery, was more receptive than Gerald's, 's or mine. And though the news about Gerald had shocked us, I figured the chances of not working out as the donor were virtually zero. Though he had put on a few pounds like the rest of us, he looked as healthy as ever. *** he transplant coordinator paged me the following Monday. was out. His biopsy showed his liver was 40 percent fat, not a major health problem for him, but one that would stop him from being the donor. Benedetti scheduled liver biopsies for and me that Wednesday. He didn't want to take any more chances. Checking in to the hospital at 5:30 a.m. that day made the whole thing suddenly hit home. It's one thing to say you'll donate your liver; it's another to do it. and I spent all day at the hospital. The biopsy took just 30 seconds, but nurses needed to monitor our vital signs for six hours just in case. ''Whatever you do, don't look at the needle,'' told me beforehand. Later, I found out why: It was about a foot long. The only pain I felt came when the doctor injected the local anesthetic. I then felt the pressure of the biopsy needle a bit, but it wasn't bad. Jen stayed with me as I lay on my side in the hospital bed to prevent bleeding. With the biopsy behind me, I could sense the clock was ticking for Mark. Benedetti originally told us he could live two to three years with his cancer, but his body didn't seem to be playing along. He couldn't eat right and was getting weaker because the tumor was pressing on his insides. It also was affecting his hormone levels, causing him to get anxious and short-tempered. Six days after my biopsy, I paged Benedetti at 6:30 a.m. I told him I wanted to be Mark's donor. was dealing with a personal situation, having talked about it briefly with me and more in-depth with . She left me with the impression that he had decided against going through with the surgery at this time. I was worried more delays could place me on the operating table at the same time was having our baby, so I talked with . I told him that I should be next in line to do the transplant. We agreed that if the tests ruled me out, he'd be up next. Benedetti scheduled my angiogram and heart tests for Dec. 7 and 8. The surgery would be Dec. 12. The angiogram entailed sticking a tube into my groin and up through my abdomen to give doctors a closer look at my anatomy. I wasn't knocked out but don't remember much because the doctors doped me up on morphine and Versed, an anesthetic. While the drugs felt really good during the procedure, they felt awful after. I started throwing up like a drunken college kid. My stomach settled around 9 p.m., and loaded me into the car, brought me home and fed me soup. I went to bed about 10:45 p.m. but had to be back at the hospital about 8 a.m. to donate a unit of my own blood for the surgery. Still lightheaded from the night before, I took the train downtown and a cab to UIC. The folks at the blood bank told me to eat a good lunch, but I couldn't because I couldn't eat anything before my heart test at 2 p.m. In between, I tried to work a few hours downtown. The last test entailed jogging on a treadmill to see how my heart worked under stress. Thankfully, the test didn't involve needles. Breaking a sweat actually made me feel better. I passed all the tests. All I had to do now was tell my family. *** y dad called me on Saturday. I was ready for him. ''You know I wouldn't do anything I thought would leave without a husband and the baby without a father," I told him. "I've done my homework. I've been through all the tests, and supports me.'' I could hear him crying. ''When is this going to happen?'' he asked. ''Tuesday.'' ''Tuesday? I don't know about that,'' he blurted. ''That's awfully quick. You've got to give me some time.'' Dad showed more emotions during the next 30 minutes than he had in the last 28 years. He went between pride over his son doing the right thing, fear something might go wrong and confusion about breaking the news to my mom. I cried, too. ''I'm sorry I have to put you and Mom through this,'' I said, ''but I've weighed everything, and it's the right thing to do. You know that.'' Doing the surgery quickly, I explained, was in everybody's best interest. With luck, Mark and I would be out of the hospital before Christmas, and I'd be healthy by the time Jen had our baby. Dad eventually agreed, but he still didn't know what to do about Mom. He contemplated waiting to tell her until after the operation. He wanted to talk to my Uncle Dennis Karas and Aunt ette Karas, my mom's younger sister, before deciding. I already had asked the Rev. Gavin Quinn, the priest who married my parents and baptized me, to help him. Later that day, Dad paged me. He would wait to tell Mom about the surgery until after I was in the recovery room. ''There's no way she can handle this,'' he said. ''Aunt ette and Uncle Dennis are with me, and Father Gavin is going to help, too. "It's going to be OK.''

Barb In Texas - Son (Ken) UC 91 PSC 99

[Guest guest]

Barb, I need the rest! Great read but I must have the rest! Can you

tell I hate cliffhangers! Thanks for posting this!

Jen