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Pat Kacani (left) and Matt Felix met as freshmen in 1981 at University of Richmond where they both played on the school’s soccer team. They wear scarves in support of Carry the Flag, the group that worked to save men’s soccer at UR last fall, but failed. Photo by Susan Cook
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Like badges of honor and brotherhood, Felix and Kacani bare their surgical scars. Photo by Susan Cook
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Feliz and Kacani in tehir first meeting after the surgery. Photo courtesy Kim Kacani
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A Christmas tree ornament pays tribute to the liver that saved Matt Felix’s life.
This is the story of a liver.
One pink, healthy, formerly hard-living but since reformed and now heroic liver that was christened Isaac by its two — count 'em — two proud owners. The story of this well-traveled and surprisingly photogenic liver began more than 30 years ago on the hilly, ivy-laced campus of University of Richmond.
The tale reached its dramatic conclusion on two operatingtables in New York City decades later. And it will be told and retold, likely for many more decades, with twin ornaments adorning Christmas trees in Richmond and Westfield, N.J.
It was a particular early-autumn afternoon in 1981 when Isaac the Liver steps on to the road to destiny, when two healthy young men, grass-stained and sore after an afternoon on the university's makeshift soccer pitch, meet and strike up a seemingly instant — and certainly fateful — friendship. They prepare to go their separate ways back to the dorms, but as it turns out, their separate ways follow the same shady, tree-lined path and then to the same noisy, sweaty men's dormitory hallway.
The two couldn't be more different. Along with what seems to be about half of the UR student population, both predictably hail from central New Jersey. Pat Kacani is on the short side of medium height, with a tan complexion, dark hair and dark eyes. Reserved in conversation, he owes his roots to an Irish family that tends toward the clichéd Gaelic hereditary struggle with fine spirits.
Matt Felix, by contrast, towers over Kacani — and most of his former soccer teammates. Of German extraction, he has the outgoing personality of a born salesman. A lifelong athlete and soccer lover, his fair hair and pale complexion have earned him the lifelong nicknames of "Ingmar" and the "Big Swede."
"We both made the team," says Kacani, his eyes crinkling as if peering back 30 years. "In our sophomore year, we became roomies. We pledged the same fraternity. Then we went our separate ways, he back to New Jersey, and I stayed in Richmond."
But their friendship outlasted the soccer team, graduation in 1985, marriages, the raising of children — Felix's son, Andrew is now a UR freshman — and the distance of both miles and years.
It also nearly outlasted Felix's liver.
That liver, unlike Isaac, shall remain nameless. Diseased, atrophied and choked by a hereditary condition that caused his own immune system to attack it, Felix's liver began failing not long after college ended. Lifesaving drugs and a healthy lifestyle staved off the inevitable for two decades. None but his closest family knew. But nothing lasts forever.
"He didn't let on to anybody," Kacani says. "And you couldn't tell. You would never have known — and he didn't even really know how serious it was. He would have a pain — maybe it was from playing soccer, and he would maybe take a Tylenol — which is perfect for the liver."
The disease — primary sclerosing cholangitis, or PSC, which also killed pro football great Walter Payton — brought its full brunt to bear on Felix's liver in March of 2012.
"The effect is essentially that which an alcoholic — by drinking all the time — would have on his liver," says Felix, who turned 50 this January. "This kind of disease doesn't improve as you get older. That's why it got to the point where the only alternative was organ transplant."
In fact, when Felix was told his liver was near done, it really was very near indeed.
"The next step in this disease would have been cancer," says Kacani. "Once that happens, it's a quick progression to death."
Felix was placed immediately on the organ transplant list, stepping into a long queue to await a chance at survival, dependent not only on another's misfortune but also on that person's physiology. A donor's blood type and other markers determine whether a prospective liver might live and function properly.
But he still didn't reveal his plight beyond his nearest and dearest. His family, including a brother and sister, were tested to see if they could be live organ donors. The liver is the only human organ capable of growing back to nearly its full size if a portion is removed. The transplanted organ similarly grows to nearly full size.
"My immediate response was not to call everybody I knew, saying please help me," says Felix, who hoped one of his siblings might be a match, but who didn't know it was even a possibility to look outside his family for a donor. His wife, Trish, another UR alum, was too small even to hope to be considered.
"I really wasn't aware of the whole living donor transplant thing, and I just figured my brother who is similar age, similar size, etc., would be a match," Felix says. As it turns out, the Big Swede was too big. For either sibling to give up enough liver to save him would have left too little liver for them to live.
Even as his condition worsened heading into spring, Felix hesitated to tell others he needed help.
"I didn't look the same," says Felix, who began suffering from jaundice, a common side effect of a failing liver. "People commented I still had my tan in December." They mostly didn't comment on the fact that the whites of his eyes had taken on a disturbing sepia tint.
At last, Felix decided there was at least one group he'd have to tell: his over-40 recreational soccer league team. "I sent [the organizer] an email saying I'm not going to be playing because I've got some health issues."
The organizer sensed there was more to the story. He pried, Felix says, finally getting the full story from his stricken teammate. In spite of Felix's mild protests, an email went out to about 1,000 or so members of the local rec-league soccer association.
And because the University of Richmond is, in an unofficial diplomatic sense, a province of New Jersey, that email made its way into the hands of the sister of one of Felix and Kacani's UR fraternity brothers. He, of course, forwarded it to some of his fraternity brothers. At last, the email landed in Kacani's inbox.
"I'll never forget it," says Kim Kacani, Pat's wife, who'd hosted Felix during his visit to Richmond two years earlier, and who'd suspected nothing of her husband's friend's condition at the time. "I was at the mirror putting on my face … and he said, ‘I just got an email. Matt needs a liver transplant.' "
The moment sent a chill through Kim. Two years earlier, her husband had seemed less likely to be an organ donor candidate, and more likely to be on his way to being a future recipient himself.
"Patrick had had a bad physical," she says, remembering the prognosis that stunned both of them. Already parents of two teens, they'd recently added a young daughter, Mollie-Aidan, to the mix.
"High cholesterol and high triglycerides, overweight and staring at a three-generation Irish family history of becoming beholden to alcohol," Kim says. "He said, ‘I'm done,' and he quit drinking, started eating right and lost 30 pounds."
Standing that morning in the shower, Pat Kacani may well have been in the best shape he'd been in since he shared the UR soccer pitch with Felix. "I'm sitting there going, ‘So that's what this was about,' " Kim Kacani says. "It's this overwhelming sense of — I can't explain it, but he said it: ‘I knew I'd be a match. I knew I'd be doing this.' You can't explain the feeling."
Her husband, speaking with an almost religious reverence, had already committed to sacrificing a part of himself to save his friend.
If live kidney donation today ranks as almost routine — there were more than 6,000 live-donor donations in 2011, mostly of kidneys — live liver donation remains a comparative rarity. Live liver donations between non-family patients are even rarer, says Joel Newman, a spokesman with Richmond-based United Network for Organ Sharing, better known as UNOS, which coordinates the entire U.S. organ transplant system. UNOS doesn't coordinate live organ donations, but it does maintain statistics, and those statistics paint a picture of just how unlikely it is that Kacani's liver would have a chance to play the hero.
"The [kidney transplant] surgery is — it's relatively uncomplicated," Newman says. "The liver does have some greater risk. I wouldn't oversell that, but there's a lot of blood flowing through the liver. It's harder for the liver to recover if there's damage done."
That added risk crystallized with the medical community in the early 2000s.
A series of live-donor deaths led surgeons to re-evaluate the process for prequalifying prospective donors, especially those not related by blood or marriage.
In the peak year, 2001, there were 524 live-liver transplants nationwide. In 2011, the most recent year for which UNOS has compiled full numbers, there were 247. The vast majority were from parent to child. Of a total of 28,537 U.S. organ transplants performed that year, about 6,000 were liver transplants, an indication of just how rare live-liver transplants have become. And the need far outweighs the supply: More than 15,000 people are on the liver waiting list in any given year.
Part of the reason live donation is so rare is that in addition to confirming a physical match, physicians now insist on an expanded battery of psychological — and even financial — tests to ensure the donor is fully apprised of the level of their commitment.
Even after a physical match is found, other qualifying factors mean there's only about a 20 percent to 30 percent chance a live donor will meet all the criteria.
"There's no organ for which we don't have a shortage of donors," Newman says. "There's a shortage for all organs. But at least with kidney transplants, you have dialysis as a long-term backup. With liver and some of the other organs, there's really no feasible long-term backup. If you get to a certain point of liver or heart or lung failure, the patient will die."
The Kacanis were intimately aware of the danger their friend faced. Kim describes herself as an obsessive researcher who started looking into Felix's condition — and her husband's risks — almost instantly. But even after hearing the statistics, Pat Kacani never wavered.
"I am a witness to his calm, though I was a freak show," says Kim Kacani, normally a bubbly complement to her husband's reserve. She takes on a sober air when considering the one factor that firmed her husband's resolve. "At the end of the day, every conversation we had, it came back to being, ‘Can you imagine being Trish with three children and your husband getting that kind of a report, having your family exhausted and having no options?' "
And so Pat Kacani had no hesitation as he submitted his donor paperwork, officially throwing his hat into the ring.
"All through the process, they're telling me 20 percent chance: He's a big guy, and you're not so big," Kacani says. "Everything might be perfect, but you may not be big enough."
Indeed, the size difference between the two men meant without a doubt that Felix would need the majority of Kacani's liver. About two-thirds of it, to be exact. And for that to happen, Kacani's total liver would need to be big enough that he'd have at least 30 percent of the organ left at the end of the operation.
"They kept telling me that, and they kept saying, ‘You may not be a match,' " Kacani says. "I kept saying, ‘If I'm not a match, I'm going to be pissed.' "
Making the entire procedure even less likely was Kacani's recent past. He'd gone cold turkey, but he'd earned a reputation in his 49 years as someone happy to lift a pint: "People were like, ‘You? You're giving your liver?' "
As it is, there had been two other prospective donors ahead of Kacani. Both looked promising. Both made it through all the first and most critical parts of the screening.
Back in New Jersey, with each prospective donor, Felix says, he tried not to get his hopes up too high. He'd already been disappointed after news that neither of his siblings were candidates, "and as my wife likes to say, even after you pass the test, the doctors, they do everything they can do to talk you out of it," he says.
Felix isn't kidding. Once all other testing is done, including that battery of psychological tests and a thorough review of a candidate's financial health (to ensure they're prepared to weather a stretch of time where they may need to miss work), perhaps the most grueling test remains. The Kacanis call it "the cone of silence." This is a period after the prospective donor is a match when the hospital team literally goes on radio silence.
The phone stops ringing. No emails come. No mail from the hospital. No more forms to fill out. Just the donor, stewing in his own juices, left to second-guess himself. Waiting as cold feet set in.
And so it went with the first prospective donor, the father of one of Felix's son's friends in a soccer league.
"Even though we weren't that close, he was really committed and said, ‘I would never want my son's friend to grow up without a dad,' " Felix says, recalling his short-lived elation after all the testing was done. But the cone of silence ended that.
"A couple of weeks later, he said, ‘Matt … I'm getting kind of cold feet here.' They really do put the fear of God in you."
Felix's own brother-in-law also made it through the physical testing, only to enter the intense psychological stare-down. He blinked.
It's hard to explain the flood of constant emotions for a person facing his own mortality as hope after hope falls through. It's a harder thing still for that person to find a place of peace with healthy and qualified donors who can't quite bring themselves to make the sacrifice.
Felix says he found that place of understanding, which he best describes through an analogy.
"Three buddies go out drinking, and one says, ‘I'm going skydiving tomorrow.' And the other two say, ‘Oh, I'll go with you,' " Felix says. "Well, the first thing is, you've got to wake up early the next day and go to a three-hour class. And the first guy drops off. Then the two guys left go up in the plane, and they throw the door open, and the one guy says, ‘Hey, I just can't go through with this.'
"I decided early on that I would never get upset with someone that said, ‘I went through the test, but I just can't go through with it,' " he says.
Going by the friend count in Felix's story, there was nobody left in the plane to jump with him. And in fact, at this point in the story, Felix didn't know Kacani was willing to take the plunge with him. Indeed, it was July, and he'd not even called his friend and former soccer teammate to tell him he was sick.
At last, Felix made the call to Richmond. He tried to break the news slowly, easing into the story and struggling with how to tell Kacani. On the other end of the line, 400 miles away, Kacani smiled, not letting on that he not only knew everything, but that he had his own news to share: He'd turned in his paperwork on July 3, 2012, to step into the line as a donor.
By September, the news was even better. When Kacani got a call from his friend on Labor Day, he could hardly contain himself.
"I said, ‘Matt, I'm a match,' " Kacani recalls. Felix — unaware that his friend had received official word days earlier — cautioned him that one of the test procedures still might disqualify him. But Kacani reassured his friend: "No, really, I'm a match."
The next few months were a whirlwind. Kacani had to submit to an entirely new battery of testing after Felix decided to switch from Mt. Sinai Hospital to New York Presbyterian Hospital. He'd heard positive things about a live-donor transplant done there recently between a father and young daughter from his own New Jersey town.
Finally, on Nov. 27, the two men woke in the pre-dawn hours and with their families made their final, chilly trek together to the hospital.
"Walking into the hospital, Matt was giving Patrick every opportunity for an out," Kim Kacani says. "He kept saying, ‘It doesn't mean you're jumping out of the plane. You don't have to jump out of the plane.' Finally, I took his arm, and I said, ‘Matt, you're getting a liver today. We're here. We're doing it. We're all walking to the hospital at 5:30 in the morning together.' "
Ironically, even as one UR soccer alumnus prepared to make a major assist for his fellow UR soccer alumnus, the game down in Richmond wasn't going so well. The very soccer team that had brought them together was about to be dissolved as the university rebuffed a major, potentially lifesaving cash donation from the group Carry the Flag presented by Kacani's boss, Bobby Ukrop, who had served on the school's board of trustees.
As they were wheeled back into surgery, Kacani and Felix held "Carry the Flag" banners to show support for the ultimately doomed team that first bonded them. Kim Kacani took a picture and sent it to Ukrop.
Surgery went smoothly — almost. Kacani, who has a naturally low resting heart rate, nearly became part of the statistic that led surgeons a decade earlier to scale back live-donor liver transplants. He flatlined for 20 seconds as the surgeon made incisions for laprascopic instruments, jolted back only after being administered adrenalin.
Determining all was well, doctors decided to proceed. As they did, they snapped a picture of the healthy liver, pink and whole and still nestled in Kacani's abdomen.
The following day, just hours after the surgery, Kenneth Kacani, Patrick's younger brother, posted a relieved Facebook message to supporters.
"My brother Patrick Kacani did something yesterday that no words can accurately describe," he wrote of the transplant that came with considerable personal risk. "It's easy to say what you ‘could have' or ‘would have' done in any given situation, but to look your friend in the eye and say, ‘I'm going to help you today' and never waver on that conviction, is truly an act of bravery. I honestly don't know if I could have done what he did."
For his part, Kacani is modest about the act of having given away more than half of his liver to another person. He smiles and suggests it's the least he could have done under the circumstances. Felix is less inclined to understate the chance his friend took to save him.
"Quite frankly, Pat's the real hero here — he's the guy that stepped up," says Felix, becoming quiet when considering whether he would have been so resolute if the operating tables had been turned. "You know, I've wondered about that, and it's hard to say. I'd like to think that I would, but I wouldn't want to say for sure, because I don't think that's the right answer to just say, ‘Yes, I would.' I think it'd be a really tough decision."
But regardless, Kim Kacani says, there is no question that it was the right decision for her family.
"You sit in that waiting room, and there are so many stories," she says. She recalls a woman with cystic fibrosis who had twin daughters and who'd just received a double-lung transplant that gave her the chance to see them grow up.
And then there was the man Pat met in the recovery room.
"He was this huge man from the islands with dreadlocks down to the waist, and he was just huge — probably 6-3 or 6-4, and he donated a kidney," she says. "He said, ‘You know, I've known my friend since the third grade. I've known him for 18 years.' "
The event, Kim says, made her count her blessings.
"I think organ donation. … People think it's so commonplace. But people don't realize how many people aren't registered [donors] and how long those waiting lists are."
And what of Isaac? Well, technically, there are two Isaacs now. The one in Kacani had already grown back to more than 85 percent of its original size as of late February. And Felix's half of Isaac is doing equally well, growing every day and at last providing its host with a chance at a normal life.
So why did the Kacanis name Pat's liver Isaac?
"That very first day when Pat said he was going to do this, we said put that sucker on the altar and let God decide what we're going to do," Kim says, referencing a biblical tale of sacrifice. And there's no doubt Isaac will long be loved by both of his families. Adorning Matt's version of the Christmas tree ornament is that picture of Isaac the Liver taken during surgery, featuring in appropriately cutesy letters the tribute "Baby's first Christmas 2012."