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More than 1,000 South Carolina residents are on a waiting list for an organ transplant. The Greenville News

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Coping with a life-threatening illness can be a journey of loneliness and isolation.

Few — not even close friends and family — truly know the overwhelming fear, grief and desperation a patient and his caregivers are going through.

The paralyzing terror, the dashed hopes, the questions of faith are only a few of the struggles that Allison and John Greene dealt with after John was diagnosed with a rare disease that nearly took his life, leaving him in need of a kidney that his mother, Allison, would end up giving him.

It's been six years since their story was chronicled in The Greenville News.

And now the mother and son from Greenville are sharing their harrowing odyssey in a riveting new book, “Since John Got Sick.”

From the joint pain and bloody sputum that first signaled something was wrong, to the pumping of the ventilator that breathed for John while he was in an induced coma, to the transplant surgery that left them both weak and depressed, the Greenes tell the story of John’s tortured body, his brushes with death and his eventual recovery.

Along the way, they detail the financial and emotional hardships, the frustration they felt over a sometimes callous health care system, and the gratitude and admiration they came to have for the medical skills that saved him.

“I think a lot of people who read the book will be surprised at how hard it is,” Allison said. “I just hope that ... somebody can get some benefit from it.”

Rare disease comes on unexpectedly

It was 2010 when John first showed signs of being sick.

Just two years out of the University of South Carolina and working as an account manager, he began to have trouble breathing and pain in his joints. When the symptoms didn’t disappear after a few months, he realized it wasn’t the flu, as he’d suspected. 

A battery of tests followed, but doctors were initially baffled.

Finally, a kidney biopsy confirmed that he was suffering from Wegener’s granulomatosis, a potentially fatal autoimmune disease that strikes only about 1 in 25,000 people. The cause is unknown.

John was hospitalized multiple times — often for months and often in agonizing pain or kept alive by machines. He endured complications like blood clots and meningitis, dialysis to do the job of his failing kidneys, and one surgery after another.

And there were the side effects caused by the powerful treatment used to bring the disease under control.

Allison stayed by her son’s side, praying that he wouldn’t die. And thinking that if he did, it would be too much to bear.

“It was all too hard,” she wrote in the book. “I felt I would never live through this myself.”

In his hospital bed, John, a former soccer player, runner and wrestler, was often overcome with anxiety about what his future would be like — if he survived at all.

“At times, the fear of Wegener’s was debilitating,” he wrote. “The thought of relapse would hit suddenly, bringing panic, tears and shaking. And things weren’t getting better.”

Kidney donation takes toll on mom, son

Though doctors at Duke University Medical Center eventually found a treatment that successfully fought the disease, it took time.

And watching her son battle such a relentless attack while trying to hold on to her marketing job and somehow pay the bills while shuttling between hospitals in Greenville and Durham, North Carolina, took all the strength Allison had.

Finally, though, John was in remission. They took a moment to exhale.

But between the illness and the treatment, his kidneys had stopped functioning. Having overcome a dangerous disease, he was now put on the waiting list for a risky organ transplant.

In 2012, after Allison was found to be a good match, the surgery was scheduled. And while her new kidney enabled John to end the dialysis that had been keeping him alive, it was tougher on them both than they’d ever imagined.

Dealing with her own inner demons and physical condition, Allison had a hard time getting back to work. John, meanwhile, would have to take costly immunosuppressive drugs for the rest of his life to prevent rejection of the kidney.

For them both, the struggle had taken its toll.

After some soul-searching, Allison, who had a religious background, found healing in spirituality.

“I have a degree from seminary and was married to a minister for 25 years, and yet I had a lot of challenges about that,” she said. “But even when there were doubts and a lot of darkness, it was my faith in something greater than myself that is the total reason I was able to get through this."

Though he appreciates the prayers that were sent his way, and prays every day himself, John still grapples with spiritual questions about his illness.

Healing after transplant takes time

Though he’s still working on healing emotionally, John, now 34, is physically better than he’s been in years.

He spends time with friends, his lovable dog, Pippin, and is dating a woman he first dated as a student at Greenville High years ago.

He still makes frequent visits to doctors to make sure he’s OK and the kidney is still functioning. And because of the anti-rejection medication, he’s susceptible to colds and other communicable illnesses.

But for John, a business major, the hardest part of life since recovering has been the struggle to find a good, full-time job despite hundreds of applications.

“I was out of college for only two years before I got sick,” he said. “So there’s a hole in my resume.”

Getting counseling, acupuncture and other nontraditional treatment has also been hard because it’s costly and not typically covered by insurance, Allison said.

“John had, without a doubt, the best physical care in the world, both locally and at Duke,” she said. “But in terms of dealing with the emotional, mental, social, financial side — it’s basically nonexistent.”

Friends who’ve read the book say they never had any idea of all that mother and son endured.

“One, he was my roommate for a while, he knew more than anyone how hard it was,” said John, “but even he said he didn’t know the extent of it.”

Writing book proves therapeutic after illness

The idea of writing about their ordeal was something that Allison, who’d published two earlier books, had been toying with off and on.

She’d always kept a journal, and this time was no different, as she recorded all the frightening moments of John’s illness to help her process her emotions.

But she’d vowed to never write another book after her second volume — regretting it as too personal. However, friends eventually persuaded her that she needed to write about this.

“It’s been very long and time-consuming,” she said. “So many times I stopped and backed off and decided I wasn’t going to do it. And then I thought, ‘I guess I’ll try this again.’”

Writing didn’t come as naturally to John. But his mom suggested it could be therapeutic in helping him deal with the trauma.

And once he began, he realized she was right. His entries were born of the haunting thoughts that kept him awake late at night.

“It helped get the things that were bothering me out of my head, for one thing, not just stuck spinning in there,” he said. “When I got it down, I could let it go.”

But instead of turning on a computer to record his thoughts, to Allison’s astonishment he wrote his passages on his mobile phone.

“It (writing) was hard for me," he said, "and it kind of flowed easier that way.”

Book helps advocate for organ donation

Honest and often raw, the book doesn’t gloss over the tough stuff, which was one of John's goals. But as somber as their story is, opportunities were found to inject some gallows humor.

“Between the swollen ankles, stretch marks, nausea and extreme sense of smell, I’m closer to knowing what pregnancy feels like than any man should be,” John wrote of some unpleasant drug side effects.

“Let me say for the record, be nice to your pregnant wives, guys.” 

While the book was a cathartic experience for them, Allison and John said they wrote it in hopes of helping others going through similar trials, to advocate for organ donation, and to make readers aware of what families in these situations face medically, financially and emotionally with limited support.

“In the editing process, I was just thinking that we wanted to try to get this message out and have it so a book club or church group or physician or medical student classes would have it,” Allison said. “And there’s a lot of information about how to be a living donor.”

As they wrote, Allison was struck by John's willingness to be involved in the project, knowing how he values his privacy.

“I’ve been nervous about it,” John admitted. “But if it can help, it’s worth it.”

Though both are feeling healthy these days, memories of the illness are never too far off.

“It’s not something I can just get over and forget about,” John said. “Sometimes it seems like it was yesterday and sometimes it seems like 30 years ago. But when I get sick or scared of something going around, my brain immediately flips back to fight mode.”

Still, the framed Greenville News clipping about the transplant hangs in Allison’s office, where it serves as a reminder of how far they’ve come.

“Every day, I glance at it and think, ‘Thank God we're not there,’” she said. “It’s the one thing I can look at over these eight years and consistently see progress.”

Allison and John Greene will host a reading and book signing on June 5 at Fiction Addiction, 1175 Woods Crossing Rd., Greenville at 6 p.m.

To learn more, go to www.facebook.com/sincejohngotsick/.

To learn more about organ donation, go to http://SharingHopeSC.org.

To register to be an organ donor, go to www.DonateLifeSC.org

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