Cameron Wohl of Parsippany, a former student of County College of Morris in Randolph, got a second chance to live just one year ago when his older brother, Jared, donated a portion of his liver to him.
The brothers spent the past year documenting their family’s journey through the transplant experience and are almost ready to share their documentary to encourage and educate others about the indispensable need for more donors. They are hoping to get the documentary out for distribution to the public later this year.
Cameron, 25, and Jared, 28, raised money for the production of their documentary through the organization they established – The Wave Set – to create a movement and spread awareness and education on the importance of organ donation. In Dec. 2013, they had started a campaign to raise money for their documentary. Through social media and a line of apparel to serve as visual awareness for their cause, the pair raised almost $35,000 during their one month campaign.
They are on a mission to share their story and encourage others to become donors.
“People should see this film because the necessity of needing a life-saving organ transplant can happen to anyone at anytime,” says Jared. “Too many people are suffering from the inability of receiving a life-saving transplant and we owe it to ourselves to change that.”
This time last year, the brothers were recovering from surgery at New York Presbyterian Hospital in Manhattan. Cameron’s journey actually began when he was 13 when he was diagnosed in 2003 with Primary Sclerosis (PSC), a rare autoimmune disease- primarily affecting his liver- with less than 200,000 cases worldwide. He went from being an “active and normal” seventh grader to “quite sick.” He would get a “viral flare up” but after it persisted, went to see a doctor, he describes. He had been diagnosed with ulcerative colitis a year prior which can result in PSC, he explains.
Cameron had a procedure done, ERCP, to remove the stones and sludge in his liver. Problem is the “PSC doesn’t have a cure,” says Cameron. “While I was stable I wasn’t cured by any means.” Cameron had to be on medicine for four years throughout high school and then at the age of 17, “they dropped the hammer” and told him “I was going to need a liver transplant. At some point, my liver would fail,” without a transplant.
“I was listed for transplant for a deceased liver,” Cameron explains. “There’s such a high demand for these organs. I knew I was nowhere near the top of the list. They use a formula; they give you a number” based on the Meld System, a scoring method implemented in 2002 to prioritize patients need for a transplant.
But that all changed by the time Cameron turned 21. “I declined and presented more issues, so they said ‘you may want to explore a living donor.’”
Jared jumped right on it, went through the “extensive process” to make sure he could be a viable option.
“He was approved,” says Cameron. “He was a perfect match to be a donor for me.” Three years apart to the day, the brothers share the same birthday…and the same liver.
Jared, a business teacher at Parsippany High School and computer teacher at Brooklawn Middle School in Parsippany, says he felt obligated to help his younger brother.
“I just felt like, a part of me, there was an obligation to my brother,” says Jared. “How do you pass up the opportunity to save someone’s life especially when it’s someone’s blood? Without hesitation I knew I’d do everything possible to save my brother’s life.”
Cameron’s younger sister, Brittany, was also a match for him as well as his dad. In order to be considered a match, both individuals need to have the same blood type. Candidates then go through a costly evaluation process that involves body scans, EKG’s and blood work.
With Jared close in age to his brother and the same body build, he would be the best match for Cameron.
Only obstacle was Cameron’s concern for his brother.
“When he was approved, I got cold feet,” says Cameron. “I don’t know if I could put my brother’s life in danger. At any time, I could go into liver failure.” Cameron figured “I had a safety net; if anything happened, he [Jared] was willing and able.” So he conferred with his doctor who told him “if you’re not ready you can defer and wait.”
Cameron decided to delay the process to have the transplant and put his brother through the procedure, but that all changed 18 months later.
“I prolonged the transplant,” says Cameron, a business specialist for Apple. Although he missed a lot of his senior year from being “exhausted,” Cameron still graduated high school and then attended CCM where he earned his associate’s degree in Exercise Science in 2010.
“I was doing pretty well,” until his routine checkup in Aug. 2013, when doctors found a tumor on his liver.
After reviewing his medical options, Cameron decided to get chemotherapy treatment- Chemo-embolization- to target and kill the tumor- on Oct. 31, 2013, and then later go through with the liver transplant on Feb. 11, 2014 at New York Presbyterian Hospital in Manhattan.
Jared went into surgery first, a four hour procedure to remove the entire right lobe of his liver, or 65 percent, about the size of a fist. His incision is from the bottom of his sternum to the top of his belly button.
Doctors had to take Jared’s liver out first “to make sure it was good,” says Cameron, conducting “lots of microscopic surgery to make sure it functions.”
For Cameron, his entire liver and gall bladder was removed, and then Jared’s liver portion was transplanted in. Dr. Jean Edmond, who performed the first living donor liver transplant in North America in 1989, performed the operation.
“I was blessed to have them pick up my case,” says Cameron. Dr. Robert Brown, in charge of hepatology, was Cameron’s doctor up until transplant; Dr. Benjamin Samstein conducted Jared’s surgery.
Recovery was eight days in the hospital for both brothers, with two months recovery.
It was a matter of “rehabbing my entire body,” says Cameron. “I was on a lot of different medication. In the beginning, it’s really challenging, but when you look back, you get through it. From not having good blood work for so long to now, everything looks great. My numbers have been consistently normal.”
Jared agrees, “It was pretty intense,” the recovery, with “a lot of physical pain and a lot of mental anguish. It would take six to eight weeks to regenerate 85 percent of the original shape of his liver, and six to eight months to get his full liver back.
“I feel great,” says Jared, a year later. “It just takes time. You are just resting. Although it’s painful, I would do it again. It’s a surreal feeling to look back at it all; I look at my scar.” As a singer/songwriter, Jared’s says the entire experience gave him a “lot more substance to write about”…and a documentary to produce.
It was in the summer of 2013 when the brothers brought their creative minds together and came up with their idea for the Wave Set. With Jared, as a singer/songwriter and Cameron who loves to draw and paint, they decided to host a crowd funding campaign to raise funds for their documentary titled “65 Percent.”
Jared liked the word Wave, with its symbolism as a wave being one of the “strongest forces on earth. One of us can only do so much but when you join forces you can do more,” Jared explains. WAVE also stands for We Are Vital To Each Other, thus their motto.
In their logo, the A has a triangle, with the top triangle representing a deceased donor and the other 8 triangles representing how a person has eight organs to save eight lives. Those organs include the heart, liver, two lungs, pancreas, two kidneys and intestines.
“One person can save eight lives,” says Cameron.
To raise the funds, they launched a crowd funding campaign through indiegogo with incentives to people who pledge. Those who contributed got to choose from a line of the Wave Set Apparel, from stickers, to beanies, t-shirts and sweatshirts. Their goal was to raise $30,000, enough money to film their documentary from start to finish showcasing “what it’s like for a family who needs a transplant.”
Cameron says they reached six different countries through their 30-day social media campaign from Dec. 13 to Jan. 13, and raised $34,000. Cameron’s girlfriend, Stephanie Whittaker, helped design the clothing brand.
With the campaign a success, the brothers hired a professional production crew- also two brothers- Mike and Jon Altino from Silver Style Pictures in Red Bank, to film their experience from Jan. 13, 2013, through the transplant on Feb. 11, 2014, up until Oct. 2014. The full length documentary- “65 Percent” -which stands for the percentage of Jared’s liver taken out and given to his brother Cameron- captures real life experience and footage with dialogue featuring doctors, the surgeries and recovery.
“The Wave Set brings the reality to it,” says Cameron. “It’s not to show the procedures” but let others see “what the experience was like for an entire family; to see what unity and love play in this experience. We want to spread a culture of love, unity and selflessness. It’s a real life depiction of what family is all about.”
While the creative film is finished, with post production, editing, sound and finalizing recently complete, the brothers are hoping to enter their documentary into a film festival and then will seek distribution.
“Our goal is to have as many people see it as possible to raise awareness to everyone to register of being a registered donor,” says Cameron, “to give that life to someone else.”
They hope to have their documentary ready for the end of 2015. In the meantime, they have already spoken to some small rotary groups, but plan to reach larger groups by speaking at live educational events, integrating their music and art, to youthful audiences, colleges, high schools and corporate events nation-wide.
“We hope to devote more to the cause and spread our mission,” says Cameron.
Go to waveset.com, join us tab, and register as an organ donor.
The United Network for Organ Sharing, unos.org, has a waiting list of candidates awaiting transplants and a list of donors.
“A lot of people say they support it [organ donation] but they are not registered,” says Cameron. According to the web, “150 million Americans support organ donation but are not registered.”
About 18 Americans die each and every day while awaiting an organ transplant, according to the Wave Set website. To make matters worse, a new person is added to the waiting list every 10 minutes (organdonor.gov).
Source: https://zdocs.tips/doc/2216521424112314mendham-feb-2015-pdf-d1m42ezde510
Pick-up: The Randolph News; Mount Olive News (p. 18)
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