PART 2 - THE SURGERY

[Guest guest]

The surgery and a sense of hope

December 27, 2001

BY CHRIS FUSCO STAFF REPORTER

"I am lying here waiting to learn if my friend will live or die,'' I thought.

It was about 9 a.m. on Tuesday, Dec. 12, 2000. I had just been wheeled in to an operating room at the University of Illinois at Chicago Medical Center.

In the room next door, my childhood buddy, Mark Mucha, already was in surgery. The doctors were making sure his cancer--found just four months ago--was contained to his liver.

If it was, they'd take the right lobe of my liver and give it to Mark today. But if the cancer had spread, they'd cancel my surgery and leave Mark, his wife and their nearly 8-month-old son in need of a miracle to keep him alive.

The longer I waited on the table, the more my mind wandered. I thought about my wife, who, despite being eight months pregnant, fully supported this decision. I thought about all the papers I'd signed this morning in the UIC Surgicenter, wondering if I should have read them word for word.

I thought about what it would be like to face Mark if this operation couldn't happen.

That scared me the most.

At some point, I dozed off. I suspect the anesthesiologist put something in my intravenous line to help me relax.

The wait ended around 10:15 a.m. ''Get him up. They're ready to go,'' someone said.

Before I knew it, I was sitting up for an epidural--a painkilling line into the spine. The anesthesiologist put a mask over my mouth and told me to breathe in. I heard her say something about sleeping, then I was out cold.

****

About 20 of our relatives and friends visited the waiting room as the day crept along, my wife said. My dad, Jim Fusco, looked nervous but kept himself together, hoping his decision to withhold the news that I was Mark's donor from my nervous, Italian mother didn't backfire.

Updates came on the hour, until 3:30 p.m., when a nursing supervisor reported that the right lobe of my liver was on its way into Mark's body. The surgeons finished closing me up at 6:45 p.m.

Doctors and nurses wheeled me to my room in the surgical intensive-care unit around 7:30 p.m. Mark would arrive in the room next door about two hours later.

All told, the surgeons worked 13 hours--about three hours longer than planned. Mark's tumors and my bile ducts were to blame.

The surgeons removed a remarkable 15 pounds of cancer, with Mark's main tumor so large that it had pushed his other organs in ways Benedetti had never seen.

Benedetti estimated that the tumor had doubled in size during the two months before the transplant.

''His liver was to the pelvis. It wasn't easy to remove,'' he said after we left the hospital. ''It did surprise me.''

But Mark was lucky--he was among fewer than 40 people worldwide to be diagnosed with a ''primary carcinoid tumor of the liver,'' Benedetti said. That meant the cancer had grown within the liver over several years and likely wouldn't recur now that the surgeons had removed it.

The amount of cancer inside Mark wasn't the only obstacle that surgeons overcame. My liver turned out to have an unusually high number of bile ducts, the tubes that link the liver with the digestive system. ''In 1,000 cases, we'd maybe find one like this,'' Benedetti said.

I had four bile ducts attached to the right lobe of my liver instead of a single duct, which is normal. None of the extensive pre-transplant tests caught the problem. Had it been caught, I wouldn't have been Mark's donor, Benedetti said.

After removing my liver, doctors stitched up the narrowest bile duct and attached the three others directly to Mark's bowel.

''It's really unfortunate because it clearly made the operation a lot more complicated,'' Benedetti said.

Infection from bile leaks is a concern with any live-liver recipient, so he was keeping a close eye on Mark.

Despite the problems, both of us were doing well within the first few hours after surgery, Benedetti said. Mark's body showed no signs of rejecting my liver.

The anesthesia and painkillers sent me to la-la land, but said I recognized her when she saw me open my eyes.

''Hi, honey,'' I said, my voice scratchy and weak from being intubated. ''I'm going back to sleep.''

described me as ''plasticky''--pale, cold and wrapped in blankets. A central IV line, which could deliver medicine quickly if I needed it, went into the jugular vein in my neck. A catheter bag hung at the side of my bed, and the epidural stayed in my back.

Electrodes covered my body, and an IV went into my left hand. A bile drain came out of the lower right side of my abdomen and emptied into a container pinned to the side of my hospital gown.

My reincarnation as Plasticman frightened at first, but she felt better as I recognized some of my friends throughout the night. I even shook hands with Dr. Lee, a close friend from college who told Jen that I looked good given what I'd been through.

Mark's wife, , later came in to tell Jen that Mark, who had almost double the tubes and lines that I did, was doing well. I woke up long enough for her to tell me that I did ''awesome.''

''I love you, but I love her more,'' I responded, motioning toward my wife.

***

A stream of people visited Mark and me the next day. We could see each other through the window between our rooms and apparently entertained our guests by motioning our arms like disco dancers.

Maurice McNulty, a friend of ours since high school and one of the five potential liver donors for Mark, told me Al Gore was set to concede to W. Bush that night. That spurred me to launch into my Gore impersonation several times.

The Rev. Gavin Quinn, the priest who had married my parents and baptized me, stopped by around 3:30 p.m. to tell me that my mom was on her way. He quickly added that she wasn't mad.

Jen's parents, Joy and Bob Barrell, stayed at the hospital all day, but a snowstorm kept my parents from getting there until about 7:30 p.m. While I was waiting, my nurse, Donna Kamuda, kept me on my toes with questions about the baby, my friendship with Mark and my job at the Chicago Sun-Times. She went beyond the call of duty, staying after her shift ended to answer any questions my mom might have.

When my mom, Dorothy Fusco, came in, she was crying but not overly distraught. My dad and my Aunt ette Karas, my mom's younger sister, were with her.

I talked to her as much as I could, but don't really remember what I said. I just remember being relieved that she didn't look too upset.

''It was right to not tell me,'' she later told Jen and my in-laws. ''I just couldn't have handled it.''

***

Benedetti and his three residents praised my progress on Thursday morning, Dec. 14, 2000. We agreed to take out the epidural and transfer me out of the surgical intensive-care unit to a regular room.

Mark was looking good, too. Benedetti already had removed his catheter, and his kidneys and bladder were functioning well. The dozen-plus anti-infection and anti-rejection drugs he was taking were doing their jobs.

I waved goodbye to Mark through the window and took the elevator to my new pad, Room 791. It was bright, clean and had a new TV.

I had no idea how much I would grow to hate the place during the next three days. My smooth, fast recovery was about to come to a screeching halt.

Without the epidural, I used a Demerol pump to control my pain. At first, I marveled at being able to click a button to get a dose of the drug, but each caused me to drift out of consciousness, and then wake up feeling nauseous.

I couldn't roll over in bed because of the pain from the Mercedes-Benz-shaped incision on my abdomen. My back ached, too.

My right hand swelled to nearly double in size because my IV slipped out of my vein. When that hand returned to normal, my left one blew up just as large for the same reason.

My catheter came out three days after surgery, but my bladder didn't respond. I could urinate only sporadically.

, who spent countless hours at the hospital along with her parents, had to feed me because it hurt so much to move.

As I struggled, Mark continued to improve. I was told he was having back and abdominal pain, but already had begun eating and moving his bowels. Doctors were keeping a close eye on the bile ducts and his liver-function tests, which were improving.

Benedetti originally had said Mark might need more surgery to reinforce the bile ducts. But given his progress, he now said that surgery might not be necessary.

''Your boy is kicking your butt,'' one of Benedetti's residents told me on Saturday morning. ''He's eating solid food. You're still on liquids. We've got to get you up and get your kidneys working. You're young and healthy. It's going to happen.''

By this point, I was beyond grumpy. I had been switched to a pain medicine called Toradol, essentially a strong form of ibuprofen. It made me more lucid, but didn't come close to matching the epidural.

Getting to the bathroom was the worst. I realized just how pathetic I was when I was in too much pain to reach around and clean myself.

***

Benedetti ordered me out of Room 791 Saturday afternoon, Dec. 16, 2000, and into the transplant wing, where there were fewer patients and more-specialized nurses. The upgrade in medical care had a price: I moved out of one of the hospital's plushest wings and into one of its oldest. It felt like prison. UIC has since completely renovated it.

By Saturday night--four nights since surgery--my abdominal pain had eased. didn't have to feed me, and I was craving the lime sherbet that came with my liquid meals.

That's when I thought I should try solid food. If Mark was eating, I should, too.

That sounded like a good idea until dinner came. I tried a piece of fried pork chop, which left a rubbery taste in my mouth. I took one more bite and then two bites of mashed potatoes before putting aside the tray.

That night, my aching back and rumbling stomach kept me awake before I vomited on myself. After the nurses cleaned me and changed my sheets, I slept soundly for four hours--the longest nap I could remember taking since leaving intensive care.

That rest helped me start to turn the corner on Sunday. I urinated more as the drugs Benedetti prescribed to get my bladder working kicked in. I also had grown more accustomed to nurses helping me clean and change myself, though I still didn't like it.

Only a few more problems would await me before I would leave the hospital.

I took a sleeping pill Sunday night, which let me rest so well that I didn't get up and urinate. Meanwhile, I started running a 102-degree fever while asleep. That combination caused another resident to recatheterize me.

Benedetti removed the catheter the next morning after my fever had dropped. My urine output began to skyrocket, but I still had more fluid in my system than my body could get rid of.

That excess fluid seeped into my arms, legs and ankles, causing my weight to soar. I would leave the hospital weighing 217 pounds--35 more than when I arrived.

"Hey, hey, hey, it's fat Fusco,'' Mark later joked in a Bill Cosby-like voice.

He couldn't laugh too hard, though. His incision was twice as big as mine.

***

For as much as I groused about being in the hospital, seeing Mark join me in the transplant wing on Dec. 19--exactly a week after the operation--was rewarding.

Without the 15-pound tumor, he looked fantastic. And he one-upped me by shaving and combing his hair.

In contrast, my overgrown goatee made me look like Tom Hanks in ''Cast Away,'' which was being previewed incessantly on cable TV. Even after I trimmed it, I still didn't look as good as my buddy.

We walked with our IV stands in tow and shared the food 's parents, Carole and , and Mark's parents, Alice and Ed Mucha, brought. We laughed about virtually everything--from the hospital menu to Benedetti's Italian accent--and joked with our wives about shedding our loose-fitting hospital gowns for the security of clothes and underpants.

Mark just glowed, clearly looking like a man with a new lease on life. Only once did he get mushy on me, but I stopped him short. We'd wasted enough time lamenting bad luck. Surviving this ordeal so far had strengthened us, and we looked forward to raising our kids together.

Knowing I was a day from being released from UIC made me appreciate the situation more. When Jen arrived that morning, I stretched a pair of sweat pants over my swollen frame and made my first trip to the hospital cafeteria since surgery. Sitting in a room with people in normal clothes put me on top of the world.

Two other experiences from the hospital also stand out.

Nearly a week after surgery, an older-looking man and his wife, daughter and son-in-law knocked on my door. They wanted to know how I was feeling because the son-in-law was going to give a piece of his liver to his father-in-law.

''I'd do it again, but don't expect everything to go flawlessly,'' I cautioned. ''I've had some rough days, but I'd do it again.''

The family apologized for disturbing me and thanked me. I later learned their transplant never took place. Benedetti ultimately decided that whatever disease the man had wasn't worth putting his donor at risk.

I saw the man in the hospital before I went home. He looked despondent; I avoided talking to him because I didn't know what to say.

On a brighter note, a white teddy bear with get-well balloons arrived in my room at a time that I felt particularly lousy. They were from Mark's son.

The card read, ''Thank You, Uncle Chris. Love, .''

It was the best gift ever.

***

Leaving the hospital on Wednesday, Dec. 20, 2000, took forever. Besides meeting with Benedetti so he could remove a drain still attached to my side, I met with the discharge nurse, pharmacist and one of the residents. The nurse taught Jen how to change the bandages on my still-oozing incision, and my dad picked up my prescriptions.

All morning, I was praying that I wouldn't come down with a fever or other problem that would keep me in the hospital. But by 2 p.m., my dad helped pack my things and walked me to the hospital's front door.

Outside, snow again began to fall. The cold air felt fantastic, but I was exhausted.

With Jen pregnant and the bathrooms at our house being remodeled (we'd scheduled the work long before surgery), we moved in with Jen's parents and sister Bethanny in Carol Stream. Jen and I were supposed to sleep in the first-floor bedroom, but the mattress couldn't support my still-aching back and caused my incision to pull. Jen, growing more uncomfortable herself, stayed in the bedroom, but I split time between the living-room chair, family-room recliner and various carpeted floors.

Mark went home the day after me. On Friday, I called to tell him just how tasty a quarter-pounder with cheese really is. He ate one that afternoon.

We went back to the hospital Saturday morning, Dec. 23, for our scheduled check-ups. We told each other how good we looked, but we both had setbacks: mine minor, Mark's a little more serious.

My weight was returning to normal, but I had developed an infection around my incision, which Benedetti thought antibiotics would cure. He sent me home with a prescription.

Mark's blood test showed his body in the earliest stages of rejecting my liver. This wasn't cause for panic, but he would need to go to the hospital six of the next nine days to get drugs through an IV. The treatments worked, and Mark continued to recover.

The night of the checkups, we e-mailed our families, friends and co-workers, thanking them for their support. We told them about the man who never got his liver transplant and asked people to pray for him.

''Thankfully, Mark's story is en route to a much happier ending,'' we wrote. ''As the New Year dawns, please remember to sign the back of your organ-donor card if you haven't done so already.

''Again, thank you for your prayers! May all of our fortunes be better in 2001.''

***

Christmas Eve and Christmas Day went well.

Mark felt so good that he briefly went to his parents' house on Christmas Eve night and to his in-laws' on Christmas Day. He spent the bulk of both days relaxing with his wife and son.

"Mark didn't think he would live to see Jake's first Christmas," said. "We were just grateful we were together."

I stayed in Carol Stream with and my in-laws. My parents came over on Christmas Eve. My father-in-law cooked a tray of his famous lasagna.

With Jen extremely pregnant, Mark and bought us a beautiful, white bassinet for Christmas. We had planned to borrow theirs, but Mark insisted this was the perfect gift. He went to the store with and picked it out himself.

On Dec. 30, 2000, was having pain in her lower abdomen but reasoned she wasn't in labor because our baby wasn't due for three weeks. But by 12:30 a.m. on New Year's Eve, we were on the way to Central DuPage Hospital in Winfield with her parents.

Her contractions were two minutes apart by the time we arrived.

Doped up on Tylenol 3 and adrenaline, I lived up to my promise that I would help in the delivery room. For a change, I massaged her aching back.

An epidural at 3 a.m. affected only the left side of her body, leaving her still in pain. But a second one after 4 a.m. did the trick. We both went to sleep-- in her hospital bed, me on a pullout couch next to it.

began to push around 6:45 a.m., and I quickly called my in-laws to get them back to the hospital. My parents and already were on their way.

Fusco entered our world at 7:01 a.m. He was, and still is, the most beautiful creature I've ever seen.

Seeing at the hospital made me think about how much fun Mark and I would have taking our boys to ballgames and teaching them to play sports.

By all rights, this story should end here.

It does not.