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Family of liver transplant recipient to ‘give back’ through plate

By Kassadi Moore

For The Weekly

BANGOR —  Organ donor Michael Shaw was given nine more years with his brother, Matt Shaw, because he donated part of his liver. Two years after his brother death, Michael aims to give back to the organization that helped extend his brother’s life.

In 2006, Michael and Matt underwent a live-liver transplant operation — Michael as donor and Matt as recipient. The burden of the whole process was lessened by the nonprofit organization Donate Life New England. To give back to this organization, Michael hopes to bring a charity license plate labeled with “Donate Life” to Maine.

Ten dollars will be donated to Donate Life New England per plate each year.

Michael needs 2,000 Mainers to pre-order these plates for the state to accept the proposal and print the plates. Michael, assisted by Matt’s widow Zann Reynolds, has two years to complete this task, although their personal goal is to reach 2,000 orders by September of this year.

If they have the paperwork to the Legislature by September, the license plates will start printing in late 2017, early 2018. So far, there are 138 preorders.

The race to reach their goal of 2,000 license plates ordered in two years began March 13, and will end on March 13, 2019. Each year around the anniversary of Matt’s passing, which was March 16, 2015, Michael and Zann have raised funds for Donate Life New England in remembrance of Matt. Last year, Michael and Zann hosted fundraisers with the proceeds going to Donate Life New England.

“It wasn’t as big as we wanted it to be, but it was something,” said Michael.

Michael and Zann hope for at least 20,000 plates to be purchased total. Those 20,000 Donate Life plates would give Donate Life New England $200,000 annually.

Donate Life New England is composed of multiple federally designated organ procurement organizations, according to Donate Life New England’s website, and assists donors and recipients in a variety of capacities. People can register as donors and become part of a registry that is similar to registering through Donate Life America or through states’ motor vehicle departments.

Donate Life New England also can aid recipients financially. Michael and Matt lived three and a half hours away from Lahey Clinic in Burlington, Mass., where their live-liver transplant operation took place. Donate Life New England worked with hotels in the area to give them a discount on their rooms during their stay. Michael said they also assist patients who do not have insurance.

Matt was diagnosed with Primary Sclerosing Cholangitis or PSC in the early 2000s. According to LiverFoundation.Org, PSC is a chronic liver disease where ducts transferring a digestive liquid, bile, to other organs of the body become blocked due to inflammation and scarring or fibrosis. The bile accumulates in the liver and results in liver failure. This slow accumulation of bile can continue for more than 10 years before the liver shuts down, and in some patients, even longer. There is no cure.

Michael said Matt was not “sick enough” in 2006 to receive a cadaver liver transplant.

“You have to be pretty much dead to get a cadaver liver,” said Michael.

Instead, a live-liver transplant was suggested. Initially, Matt did not want to put his family members through the procedure.

“He decided after talking to the doctors and family that, yeah, maybe this was something we could try,” said Michael.

Seven members of Matt’s family went to Lahey Clinic to have blood work, CAT scans, liver biopsies and various other tests to determine who would be the best match. Michael turned out to be the perfect candidate.

“I knew at some point they may need something,” Michael said. “We thought he had kidney disease, for a while, so we thought we would lose a kidney here or there, but before this all hit us, [organ donation] hadn’t been a thought.”

Michael said he hopes the Donate Life License plates will start the conversation or “thought” of organ donation for many people.

On Jan. 11, 2006, Michael and Matt underwent the operation. They were the 100th live-liver transplant Lahey Clinic performed. They were supposed to be the 101st. The gentleman who was supposed to send the Clinic into triple-digits on the operation pushed it back to spend more time with his family over the holidays. Michael said they were told the man died just days before his scheduled operation as they went to have their operation performed.

Michael’s surgery was first. Part of his liver was removed for Matt to receive. When they opened Matt up, his liver was in a much worse state than the doctors were expecting.

“They technically shouldn’t have proceeded with the operation, but if they didn’t, he would have died on the table anyway,” said Michael. “So they did it, and he got very lucky. They said he probably had three days [left to live].”

That operation extended Matt’s life from three days to nine years. In those nine years, he held his two nieces, Makayla and Kylie, and nephew, Jacob. He met Zann Reynolds just after the operation. They were married in September 2014.

“And that’s why we really started beating the Donate Life bandwagon, because I’ve met tons of people now that without [transplants], I wouldn’t have met them,” said Michael.

Michael said those nine years gave him more time with his best friend.

“It gave us more time together to do stupid things, like watching football, something to keep his mind off the illness,” said Michael. “I mean, we’re a very joking family, so we’d make fun of [the disease]. We’d kind of laugh about it, we’d just try to keep ourselves entertained with it.”

Michael, who used to be a San Francisco 49ers fan, had to convert to be a Raiders fan when Matt told him that was the only way they could continue to share a room when they were young.

Those nine years also allowed both Michael and Matt to give back to the organization that helped them through the transplant, Donate Life New England.

Michael said they networked through Lahey clinic. Donors and recipients would call Michael and Matt to discuss the procedure and help them through that time.

Michael continues to network with donors and recipients through Donate Life. The Maine Donate Life License Plate website, along with the Facebook page, encourages people to share their story, whether they were donors, recipients or family of either. Michael said he has received many stories, but most people don’t want to share them.

“It’s almost like they’re feeling taboo about it or they’re bragging, but we want to get that kind of stigma off that,” said Michael. “Just hey, this is what we’re doing, this is why we do it. You could be a [donor] tomorrow.”

Twenty-nine states already have “Donate Life” license plates through Donate Life America. Alabama’s plates are coming soon. Tennessee is still in the application process, the same as Maine.

“The struggle now is getting those 2,000 preorders,” said Reynolds. We have a lot of support. A lot of people like the idea, but we’re really trying to convey that we need 2,000 orders for the plates to even happen.”

If the goal is not reached, the money will be refunded.

The 2,000, and hopefully more, license plates that will be promoting organ donation in Maine will not only start the conversation about organ donation or stray the topic away from being taboo, it will also be a reminder of Matt Shaw.

“I did worry about that, like, do I want to think about this every day? Because it also reminds you that he passed away,” said Reynolds. “But overall, it’s really positive. [Matt] was always really big about getting people connected with Donate Life.”

If you want to share your story about organ donation, you can contact Michael Shaw through the Maine Donate Life Plate’s Facebook page or website. Plates can be preordered at www.mainedonatelifeplate.org . The plates cost $25 dollars up front, then $15 annually that is paid with the car’s registration.

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