MORRIS PLAINS –
Brothers Jared and Cameron Wohl of Morris Plains have been close since childhood, but this past February they shared the ultimate bond when 28-year-old Jared, a teacher at Parsippany High School, became a living liver donor for his younger sibling.
The operation, performed by two medical teams at New York-Presbyterian Hospital/Columbia University Medical Center, saved the life of Cameron, now 25.
Still, it took Cameron almost two years to accept Jared's gift — 65 percent of his healthy liver.
Living donor liver transplants began in 1989 in the United States, doctors say, but they're not common. Last year, there were 6,455 liver transplants performed nationwide, according to the United Network for Organ Sharing. Only 252 used living donors.
Today, six months out of surgery, both brothers are doing well. Cameron, who recently returned to work at Apple, feels better than ever.
"A healthy liver grows back to three-quarters of its normal size in three months. It grows very fast," said Dr. Jean Emond, Cameron's surgeon and vice chair and chief of transplantation at New York-Presbyterian Hospital/Columbia University Medical Center. "Functioning is normal in about three months. It will grow back to normal size in a year.
"Basically, you're making two livers out of one," he added. "The piece you took out grows in the recipient, and the piece you leave behind grows in the donor."
The brothers, both artists in their own rights, are actively promoting The WAVE SET, an organization they founded to educate people about organ donation and encourage them to donate.
But there was a time when Cameron felt uneasy about his brother's offered gift.
"There was my brother saying, 'I want to go under the knife for you,'" Cameron recalled. "The last thing — the only thing — I could think was, God forbid something happens to him. Am I ready? So I tried to focus my mind, get in a good place, become very physically active, follow a very strict diet.
"I did everything in my power before having to go through the transplant," he added, "but my approach was a risk in itself because my disease could progress."
It did.
Four diseases
Actually, Cameron had four diseases. At 12, he was diagnosed with UC (ulcerative colitis), a chronic colon disease in which the immune system mistakes food and bacteria for foreign substances.
In his twenties, he developed PSC (primary sclerosing cholangitis), a rare condition that afflicts 5 percent of UC patients and affects the bile ducts of the liver. Soon after came autoimmune hepatitis.
Over time, doctors told Cameron, cirrhosis would set in and his liver would fail. He was treated with lots of medication, got a MELD (Model for End-Stage Liver Disease) score, and went on a waiting list for a liver from a cadaver. Cameron said MELD scores range from six to 36 — six designating a healthy liver and 36 one in need of imminent transplant.
To get any meaningful priority on the list, Cameron needed a 25. He scored 15. The scores rarely reflect how truly sick PSC patients are, he explained.
"In the meantime, more and more of my liver was becoming useless," Cameron said. "In 2012, my quality of life was really diminishing."
Around that time doctors told him his youthful ability to bounce back made him an excellent candidate for a living donor liver transplantation, though he'd need a donor who was a very healthy person about Cameron's size and with the same blood type. That's when Jared stepped forward, volunteering to undergo two full days of testing, including chest X-rays, EKGs, full body scans, and a psychological evaluation.
"When we found out the amazing news that I had been approved as a living donor," Jared said, "I never questioned for a second whether I would do it. It was a question of whether Cameron would accept the fact he had a viable donor.
"At that time," he added, "Cameron wasn't feeling as sick as he thought he needed to be in order to receive that living donor transplant."
All that changed, though, in August 2013 when a routine MRI showed a lesion on Cameron's liver. For a PSC patient, doctors said, that probably meant cholangiocarcinoma — bile duct cancer. He was going to need that transplant, but first he had to undergo chemoembolization and heat ablation to eradicate every cancer cell in his body.
"They need to know you're healthy enough to accept a new organ," Cameron said.
"Also, why put a donor, who's completely healthy, at risk for a procedure that may not be successful for the recipient?" Jared added.
Risk factor
The transplant surgery isn't risk free for the donor, according to Emond.
"There's a one in 1,000 chance a donor could die," the surgeon explained, but that is a worst-case scenario. More likely, a donor will experience conditions that are annoying but not life threatening — urinary tract infection, pneumonia, liver leakage, or, as happened to Jared, a wound infection.
"Those are all things that can be taken care of," Emond said. "There are very few people who have long-term consequences from donation."
Transplant day arrived on Feb. 11. The Wohl family — the brothers, father Sheldon, mother Robin, and sisters Dara and Brittany — arrived at the New York City hospital early in the morning. To the brothers, the whole thing seemed surreal, especially after years of waiting.
"Everybody was ready," Jared said. "It was almost as though we wanted to get it over with and start living our lives and have Cameron feeling healthy."
Silver Style Pictures, a Red Bank film and video production company, was ready, too. Its film team was there to capture the experience for "65 Percent," a soon-to-be-released documentary about the family's experience that had been commissioned by the brothers through The WAVE SET. Silver Style is founded and run by two brothers, Michael and Jon Altino.
"Being there, the day of the transplant, was very emotional," Michael Altino said. "Before he made his way to surgery, Jared came over to Cameron. This would be the last time they saw each other until they were both in recovery. Raw emotion took over and we could see it in the entire family.
"Cameron and Jared embraced each other and shared a few words before Jared left," he added. "We could see that each was extremely proud of what the other was doing, because without each other none of this would have been possible."
Two medical teams
Each brother had his own medical team, both covered by Cameron's insurance company. Surgery, starting at 7 a.m., lasted five hours for Jared and eight for Cameron.
While recovering, the brothers shared a copy of "I Can See Clearly Now," the then-new memoir by motivational speaker Wayne Dyer's. In it, he writes about how he can view the divine plan for his life in retrospect.
"That book really helped me get through recovery," said Jared, who said he experienced a lot of pain as well as the post-op infection. "The whole experience, even the infection, helped me realize how strong I am, mentally and physically."
Cameron took a lot of medication after the transplant, some only for six months, some for the rest of his life.
"It took awhile to rid my body of that exhaustion. My body was in shock. It had gone through so much trauma," he said. "I had to be careful about engaging my core because I didn't want to develop a surgical hernia. But the last few weeks have been the best, physically and mentally, since the transplant. I've really felt amazing.
"I had my first really good workout recently," he added. "Now I'm allowed to swim, so I've got my muscles working."
Additionally, Cameron's prognosis is excellent, according to Emond, who said that a liver transplant can be a cure for PSC.
"Over the long term, 10 percent of people will get the disease back," he said, adding that PSC isn't fully understood. "It does come back in some people, but it's not that common."
18 deaths a day
The WAVE SET has given both brothers a positive and productive subject on which to focus in the past months. WAVE is an acronym for "We Are Vital to Each Other" and "SET" refers to all the people who join their mission, reflected in the documentary, for which Jared wrote some of the music; the brothers' speaking engagements; and their campaign to encourage people to sign up to donate desperately needed organs.
SEE TRAILER: https://www.youtube.com/watch?v=FxB41MNQ4Mk
Cameron said he's already lost friends in the PSC community who died while waiting for a liver.
Every day, 18 Americans die while waiting for a transplant and a new person is added to the waiting list every 10 minutes, according to the U.S. Department of Health and Human Services.
Donate Life America, a nonprofit alliance, reports that 90 percent of Americans say they support donation, but only 30 percent know the steps they need to take to become a donor.
"We have confidence we'll reach the masses and emotionally connect with people," Jared said. "Unless you're going through something personally, you have no association to the cause.
That's why Cameron and I depicted our own family's experience in the documentary. Hopefully, people will sit back and realize, Hey, that could be me or my brother or sister."
Currently, no hospital in New Jersey performs living donor liver transplants, according to Dr. Nikolaos Pyrsopoulos, medical director for liver transplantation at Rutgers New Jersey Medical School.
"But we are entertaining the possibility of starting a living donor liver program at University Hospital in Newark shortly," he said, adding that of those 17,000 Americans now waiting for a liver, only 6,000 will become transplanted. He thinks that's too big a gap.
"Living liver donation is a very altruistic and very honorable situation and should be seriously considered so we will be able to decrease the number of people dying," Pyrsopoulos said. He added, though, that extremely thorough evaluations of donors are key to safety and success.
Emond takes inspiration from the Wohl family, remaining moved by their loving bonds.
"This is an intense thing to go through," he said, "but it's also a total life-affirming experience."
Lorraine Ash: 973-428-6660; lash@njpressmedia.com
Learn more
• The Wave Set, www.thewaveset.com
• National Institutes of Health Adult to Adult Living Donor Liver Transplantation Cohort Study, www.nih-a2all.org
WATCH TRAILER ON DESKTOP:
https://www.youtube.com/watch?v=FxB41MNQ4Mk
Source: http://www.dailyrecord.com/story/news/local/morris-county/local-heroes/2014/08/17/morris-plains-brothers-share-gift-liver-transplant/14192015/, Sunday Daily Record (print), p.1
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