To get closer to the things in life that mattered, Ali Jenan had to go to the brink of death
Photo by Jacqueline Dormer
Originally published in the Pottsville Republican-Herald on December 7, 2020.
ORWIGSBURG — “What if there is life after our bodies fade?” Pastor Doug Cresswell asked during Sunday’s service at Faith Church . “And boy howdy, your body came close!”
Cresswell pointed at Ali Jenan, who attended the service with his family to speak about his battle with liver disease and the last-minute transplant that saved his life.
“I’m gonna cry, probably a lot today,” Jenan, 49, of Auburn, said as he took to the stage. “I have plenty of tissues, I think.”
The speech was a medical spin on “It‘s a Wonderful Life,” with Jenan learning just how loved he really was.
“I can only hope I can return the favor someday to the people who have helped me,” he said.
“What really touched me was how his perspective has changed,” Cresswell said. “His perspective on life before his illness was about income and fun and party and hunting. It quickly changed to just being alive. It changed to enjoying every moment, realizing that family is important.”
Jenan said that for all its chaos, 2020 has been the best year of his life.
“I wasn’t sure 2020 was even gonna happen for me,” he said.
‘... go to the hospital’
In 1995, Jenan was getting his picture taken at work.
“You need to go to the hospital,” the photographer told him.
By then, Jenan’s autoimmune hepatitis had caused him to lose 30 pounds. His clothes were hanging off his body.
Jenan, a 24-year-old weightlifter, watched his body deteriorate. He loved talking college football with his doctor, an Ohio State graduate working at Penn State Milton S. Hershey Medical Center. In 2014, Jenan was diagnosed with primary sclerosing cholangitis. Doctors removed liters of fluid from his liver every week. At home, Jenan sat with his feet up on six pillows to stop fluid buildup at his ankles.
“You don’t realize what the liver does until it starts not to do it,” he said.
Eventually he became one of 15,000 people on the transplant list, but doctors soon probed the possibility of using a living donor. Sixty percent of a living donor’s liver is removed and given to the transplant recipient. The two livers eventually regenerate to full size, creating two healthy livers for the price of one. Forty of Jenan’s family and friends volunteered to be living donors.
“You really don’t realize the amount of love that’s there until you feel it,” he said. “(One friend had) to lose 30 pounds to give Ali half your liver. That’s amazing.”
“I don’t know who this Ali guy is,” Jenan remembered one doctor saying, “but in all my years, I never had this many people get tested to be someone’s donor.”
During the rigorous testing program, several prospective donors learned that they were sick. Jenan’s wife, Nicole, found out that she had cancer.
“If they didn’t (test her), I don’t know if she’d be here,” Jenan said, “because she was so worried about me. She didn’t care about herself.”
“I didn’t really feel selfless at the time,” Nicole said, “I just did what I thought I needed to do.”
Score goes up
In September 2019, Jenan’s Model for End-Stage Liver Disease, or MELD, score went up 25, meaning that he couldn’t regenerate a half-liver from a living donor. His children began to feel guilty — why were they praying for someone to die? It’s a topic that’s hard to discuss with a 9-year-old and a 13-year-old.
Meanwhile, Jenan’s kidneys and pancreas were failing.
“Pancreatitis, I wouldn’t wish on my worst enemy,” he said. “And that’s normal pancreatitis. Pancreatitis when your kidneys are failing, I can’t even explain it.”
It was an excruciating endurance test. Worse yet, the pancreatitis would make a liver transplant impossible for the time being. If the doctors tried, Jenan said, the liver “would fall apart like spaghetti.”
At this point his MELD score had reached the 30s. One October night in 2019, he finally got the call — there was a liver for him. At the time, he was wearing his lucky Yankees shirt. The liver came from a 25-year-old killed in a car accident.
For Jenan, it was hard to reconcile that a young man had to die for him to live. After a 17-hour wait in the hospital, doctors told Jenan that the liver was damaged and therefore unusable. He went out for pizza. The family had a meeting to prepare for the aftermath of Jenan’s death.
Three weeks later, another phone call; another liver was ready. He was wearing his lucky Yankees shirt again. This liver came from a 28-year-old (Jenan called him a “kid”) who died of a gunshot wound to the face. Jenan wrote a letter to the man’s family but never heard back.
“I don’t know if he’s a husband,” he said. “I don’t know if he had kids. I don’t know if it’s suicide, I don’t know if it’s a hunting accident. I’m thinking about ‘is this good for me’ when this gentleman lost his life.”
Ready for transplant
Nevertheless, the surgery was a go.
“You have a good canvas,” Dr. Takehiko Dohi said as he rubbed Jenan’s fluid-filled belly.
“At that point,” Jenan said, “I didn’t think of death. My biggest concern was, ‘am I gonna be awake when you put the catheter in?’ ”
The surgery lasted eight hours. It was Halloween, and Jenan had a new liver. Dohi, who Jenan remembered as funny and charismatic, died in October 2020.
Nevertheless, Jenan said it has been a “pretty good” year.
“Certainly not worse than my last year,” he added.
Jenan lost the fluid belly, regained the weight he had lost, only has to take 10 pills a day (last December he took 34 a day) and can enjoy pizza unencumbered.
“I appreciate life now that I was so close to not being here,” he said. “I think about how lucky I am every day. This COVID, you could really get down thinking about it, but I still have my family, I still have my health and what more could you ask for?”
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