John and Jackie Brown have dedicated their lives to helping others. Now, a grateful community is returning the favor.
“People have been so nice to us, I’m going to get emotional talking about it,” said John.
In 2010, John was diagnosed with non-alcoholic fatty liver disease, and his health has worsened in recent years to the point that a liver transplant is critical to his survival. He is a top 10 candidate for the operation and a go-bag stays in their car just in case the doctors at Chapel Hill call.
“It could happen tonight, tomorrow or two years from now,” said John, whose wife Jackie has been by his side throughout the whole ordeal.
A barbecue plate fundraiser will be held on Friday, May 27, to help the family.
The average liver transplant costs about $575,000. While health insurance will cover that cost, significant expenses are already mounting and will continue after the transplant if John is fortunate enough to receive one. For the rest of his life, John will need post-transplant medications, follow-up care and daily anti-rejection medications, all the while incurring travel expenses for regular transplant evaluation and check-ups.
The community has already rallied in support of the couple. Whether it is picking up the lift chair from Matthews Drug that he needs to ease discomfort at home or getting their car from Hilltop Garage that amasses hundreds of miles at a time with trips back and forth to Chapel Hill, John has been blown away when he goes to pay the bill.
“It’s paid for,” has been the response John and Jackie get. “‘They said to tell you that they love you.’”
The list of people who love the Browns is long. John said he is humbled by the generosity of others and the couple claim they don’t deserve the outpouring. That simply isn’t true, their extended family members across Sampson County say.
John and his wife Jackie are longtime members of Immanuel Baptist Church in Clinton, where John for many years has mentored children through the Royal Ambassador program, while also serving as deacon and director of Sunday School and the Baptist Men. John has done it all, ministering to adults and children along the way, Immanuel Baptist pastor Tim Ameen noted.
“John has been a tremendous asset to our church in every way. He has done so much over the years, and his health has forced him to give up so many of those things,” the pastor remarked. “John and Jackie are giving people who have been incredibly involved in their church and community. We feel it’s time for the community to give something back.”
Jackie has worked in the OB section of Sampson Regional for 36 years, delivering babies who have grown up and had their own children, which she has also helped deliver.
“Both have been so instrumental in helping others,” Ameen said. “It’s time for people to surround them now that they need it.”
Bryan Smith, whose parents Ellen and Ronald Smith have lived across the street from the Browns for some 30 years, has known the family most of his life. It took some coercion, but Smith told Brown he would just have to deal with the fundraiser — people wanted to help.
“We’ve known for some time we needed to do a fundraiser,” said Smith. “We were just waiting for the right time. John has always been one who would help anyone, give them the shirt off his back. If it would have been up to me, we would have already had a fundraiser.”
Smith thanked the people of Grove Park Baptist, which will host the event. Support has been overwhelming since planning began, with people scooping up tickets and others donating money outright.
“I’ve been impressed,” said Smith, who printed 2,500 tickets, a good chunk of which are already sold. “We’re just trying to get the word out and sell as many tickets as we can.”
There are already plans to cook over 20 hogs.
“We cannot emphasize enough the love and generosity of people in this community and our church. It’s just amazing how great people have been,” said Jackie, who thanked the entire Smith family — “we are honorary members of their family” — as well as Ameen and wife Lorrie, along with many, many others. “There are too many people to name and we are thankful for them all.”
She gets emotional when talking about the selflessness of the Sampson Regional staff, who have covered shifts and assisted her when she has had to leave at a moment’s notice due to John’s condition.
“Staffing is tight and they’re so busy, but I’ve never heard one of them complain one time,” she said, welling up. “I would put Sampson Regional up there with any hospital, and we’ve been to a lot of them.”
Last year, John and Jackie made the 200-mile round trip to and from Chapel Hill 22 times. People have given them gas cards to offset the cost of travel, another gift the couple are humbled to receive.
Ameen and Smith said the couple are deserving of the outpouring. They have given so much.
The pastor recalled an initiative called the Jesus Project, through which videos, microwavable packs of popcorn and informational pamphlets were handed out by the church years ago. Many churches mailed the care packages. John was having none of that. He took the packages into the community, knocking on doors, choosing to interact with people rather than their addresses.
He also insisted on doing a prayer walk across Clinton. For hours on dozens of Fridays and Saturdays, John led a group around the city and prayed for every single individual in every home. It took two years.
“You have to share the love of Christ and you can’t wait for people to come to you. You have to go to the people,” John attested, saying many took notice of the prayer walk and came out to see what was going on. “We would have people come out and they appreciated it. Some would come to church. We didn’t care about denomination, we just wanted to share the love of Christ.”
“He’s one of the most creative people you’ll ever meet. It’s been sad to see John unable to do those things he is so gifted at doing,” Ameen said. “We miss his creativity. We want to give him a chance at life and vitality again.”
A born nurse and a concerned spouse, Jackie said she is in a state of constant worry when she is away from John. It’s taken a toll. She has shed 75 pounds, due to “constant anxiety.” John has undergone his own transformation, losing 50 pounds of muscle mass while his arms and legs have atrophied, but his belly is often bloated due to liquid collecting. He had to get 10 liters of fluid drained from his stomach over visits in consecutive weeks in March. He is due for another.
“My belly is hard because I’m full of fluid,” he says touching the mound in front of him.
John’s non-alcoholic fatty liver disease has progressed to cirrhosis, causing extreme weakness and symptoms of liver failure, notably that fluid accumulation in the abdomen and mental confusion — sometimes flat-out insanity — from his high ammonia levels. His diabetes further complicates the issue.
He recently had 80 percent of his spleen removed, which will help blood-flow, another attempt to regulate ammonia levels.
“The hardest thing is trying to keep his spirits up,” Jackie said. “I’ve always been a nurturer and a caretaker. I’m just in the background. This is about him.”
“This is about us,” John corrects.
‘We have faith’
Married for 36 years, together for nearly 40, it is evident the love John and Jackie have for each other.
“When my ammonia levels go up, I lose my mind. I don’t know half of what goes on because it’s messed with my brain. My doctors rely on her to keep them informed,” John stated. “I know she’s a great nurse because she takes care of me. If not for her, I don’t know what kind of shape I’d be in. I’ve gotten ugly and helpless, and she’s stayed by my side. She’s my rock and the love of my life.”
“I’m just doing what any wife would do,” Jackie quickly interjects.
“You are spectacular,” John said. “You don’t know how spectacular you are.”
It was six years ago that John first fell ill. He couldn’t stop throwing up a dark, nearly black substance. He went to the emergency room, when he was still throwing up. It was blood. Jackie remembered the doctor’s words: had he not been at the hospital, John would have bled out.
“It was like the Exorcist,” said Jackie.
At WakeMed in Cary, John was immediately told he would likely need a new liver. His local physician Dr. Tommy Newton referred him to Chapel Hill and he was initially told he was not a candidate for a transplant.
“No one expected the downward spiral,” Jackie said. “The last three years have been the worst. Some days he’s better, some days it’s bad.”
Ameen and Smith have witnessed just how the illness can turn John into a different person.
“He may wake up today and have a good day. He make wake up and not even realize he’s here,” said Smith. “When his ammonia level gets up, there have been times he’ll go berserk to the point the Sheriff’s Office needs to come get him and help take him to the hospital.”
John takes a dose of lactulose three times a day to help decrease ammonia levels and filter out toxins in the body. When John starts getting those fuzzy and confused symptoms, Jackie knows it’s time to up the dose. John doesn’t even remember the episodes he has, and they can happen at a moment’s notice.
Jackie recalled a day a friend asked how John was doing.
“I said ‘he’s doing good’ and by that night we were in the hospital,” she said.
The pain can be nearly unbearable, but coping with not being able to play with his grandchildren or minister to the many young children at church has been the toughest for John.
The couple have two sons, David, who lives in Fuquay-Varina, and Jason, who resides in Greensboro. David has three sons, William, 6, Elliott, 4, and Phillip, 2. John dreams of having an active, productive life again and more than anything, he wants to spend many more years watching his grandchildren grow up.
“They don’t understand why papa is not on the floor playing with them,” Jackie said.
John can’t make it up the stairs at their home on Dixie Road, so much of what he needs has been moved downstairs. He was told not to drive a car or even ride a lawnmower, and most of the time he is confined to his lift chair or forced to use a walker.
“What I do is sit here,” John stated. “I’m not able to do much of anything anymore.”
An engineer by trade, John previously worked at Hamilton Beach and worked several jobs across Clinton after the plant closed. He worked right up until a few years ago, when the illness drained any energy he had.
“I used to work with the youth, the small boys especially,” said John, who wants to go back to work and ministering to others. “I love working with people and sharing the story of Christ with people, especially with young kids who know nothing about Him. I love that and I miss it a lot. I miss doing stuff with the grandkids.”
As a liver transplant candidate, John has to go to psych classes to prepare himself for the life-altering procedure. It was at that point, that it really sank in — for John to live, someone else would have to die. Always organ donors themselves, John and Jackie encouraged everyone to give the gift of life. Regardless of what happens, John hopes there are parts of him that can be used to help others.
The couple are optimistic that will be many years from now.
“We know it’s going to get better,” Jackie noted. “We have faith. We can’t wait until we can get back to normal. Our family and friends — who are our family too — and even people we don’t even know have been so amazing.”
On May 27, lunch will extend from 11 a.m. to 2 p.m., dinner from 5-7 p.m. at Grove Park Baptist Church, at 609 Northeast Blvd., Clinton. The $8 barbecue plates will include potatoes, green beans, a roll and tea. Orders of 15 or more can be delivered. Donations can be made to Immanuel Baptist Church c/o John Brown, P.O. Box 52, Clinton, N.C. 28329.
For more information or to inquire about purchasing tickets, contact Bryan Smith at 910-990-9581.
Reach Managing Editor Chris Berendt at 910-249-4616. Follow the paper on twitter @SampsonInd and like us on Facebook.