Brown’s battle Retired Ephrata police officer gaining strength after second liver transplant
By: BETH KACHEL Review Correspondent, Staff Writer
Clyde Brown, 64, is a survivor.
The lifelong local resident and retired Ephrata policeman has lived through not one, but two liver transplants in his fight against Primary Sclerosing Cholangitis, or PSC.
Nearly a year since the second transplant surgery, Brown’s outlook is upbeat. His blood work numbers are excellent and he feels strong.
"I’m back now," he said with pride, speaking of his regular workouts at Planet Fitness. "I’m doing, I think, just about every machine. I’m back at the same weights that I was before the first surgery."
With his stamina improving, Brown is hiking the woods in preparation for deer season. But now his hunting gear includes two new items: an N95 ventilation mask and gloves to protect his depleted immune system.
Come winter, he plans to head south to Florida with his wife, Linda. Only this year, he’ll be extra careful to lather on sun block and cover up with light weight UV protected clothing to protect his new organ.
Both are reminders that — after two major transplants — things will never be the same.
In 2001, Brown was diagnosed with PSC, a rare liver disease that causes bile ducts inside and outside the liver to become inflamed, scarred and blocked. Eventually, the liver begins to fail, and a liver transplant is needed.
When Brown first heard the diagnosis, he was devastated.
"I had myself done," said Brown as he remembered the shock. "You know, I figured this is it, I’m not going to see my granddaughter’s graduation. I left it work on me."
Brown sought help from a psychologist to adjust his perspective. Through education and research, he realized he could survive PSC, changed his diet, continued to exercise and take vitamins, and began to think, "I’m going to beat this."
By 2010, though, Brown’s liver was weakening. His family sent out an email explaining the need for a living donor, listing some of the basic qualifications.
Jo Burkholder, Brown’s second cousin, of Annapolis, Md., had been following similar emails for years with updates about Brown’s health. This email was different.
"My gut instinct," she said, "when I read the email was, ‘Oh, I’m a match. I should try to do that.’"
Burkholder, 46, discussed the decision with her husband and called Linda with the good news.
On April 26, 2011, after passing each of the four stages of testing over nine months, Burkholder gave 60 percent of her healthy liver to replace Brown’s failing organ.
It was her first surgery ever.
"It wasn’t as bad as I thought it would be," said Burkholder of the surgery and recovery at the Hospital of the University of Pennsylvania (HUP).
Within eight weeks, her body had regenerated 95 percent of the portion of liver that had been removed.
"My end of it was really easy," she said.
The surgery was a success, but Brown was not going to have it so easy.
In August, Brown developed a life-threatening infection, all the more dangerous because anti-rejection drugs were suppressing his immune system.
When the infection moved to his eyes, Brown ended up back at HUP so doctors could administer an aggressive quadruple dose of IV antibiotics.
After the infection cleared, Brown’s doctor told him, "I want you to know now, most people, when the infection progresses that far … the majority of them don’t survive."
The good news was short-lived. While treating the infection, doctors discovered that an aneurysm blocked the blood supply to his new liver.
An experimental surgery gave Brown an extra week, but time was running out. Doctors gave him "two or three months" to live, said Brown.
He went back on the transplant list while his family made appeals to the transplant board to speed things up. After the second appeal, Brown received a phone call from HUP with the news that a match had been found.
On Nov. 28, 2011, seven months after the first transplant, Brown headed back to the operating room to receive his second liver.
Coming out of surgery, he weighed 142 pounds and was, in his words, "nothing but skin and bones."
"My chest was concave. I couldn’t open my own pill bottles. I had no strength," he said, "I could barely get out of the chair."
With determination, Brown has worked his way back, but he couldn’t do it alone.
Friends from Florida to Ephrata have been praying and volunteering to help. He said his support has been "incredible." His daughter, Tricia, started a Caring Bridge journal to share pictures and updates with friends and family. Over 13,000 visits and 1,000 comments have registered on his site.
Far from his original fears, Brown has survived PCS and he got to see his only granddaughter, Kati, now 19, graduate high school.
The pair even hunted together for a few years.
"I appreciate the three years we had," he said of that experience, "that was great."
To this day, Brown remains positive and upbeat, joking as he traces his scars that resemble a Mercedes symbol permanently etched on his abs.
"My daughter, on the Internet, bought me a Mercedes hood ornament," he laughed, "I wore it for a necklace."
And Burkholder, even though her liver transplant only lasted seven months, said she would do it all over again.
"I did what I felt I needed to do at the time, and I would never look back and say I shouldn’t have done that," she said. "He needed a liver and I was a match … end of story." More BROWN, page A6
Posted: November 20th, 2012 under News.