Tom Rea is a husband, father and grandfather. He used to own a well-known plumbing company in Charlotte but recently retired, partially because of his liver condition.
The 65-year old was diagnosed with cirrhosis, sometimes called end-stage liver disease, which causes scarring that damages the liver and prevents it from properly working.
Tom first noticed something was off when he began gaining weight in February 2020. The weird thing was, he had no appetite and wasn’t eating much. Having just recovered from a routine hernia surgery, he figured it was related to that.
But when he went to see his hernia surgeon, he found out that wasn’t the case and was referred to a specialist. The specialist noticed a large amount of fluid in Tom’s abdomen and performed a paracentesis, a procedure that involves usin a hollow needle to drain liquid. Blood tests were also run and revealed the cause of his strange symptoms: Tom had cirrhosis, caused by nonalcoholic fatty liver disease.
Fortunately, a close family friend of Tom’s is a liver transplant coordinator at Atrium Health Transplant and Liver Center and put him in touch with Dr. Andrew DeLemos, a transplant hepatologist at Atrium Health.
Tom felt like he was in good hands with DeLemos and his team and saw them for regular checkups, where they ran labs on his liver and provided treatment as needed.
Living with cirrhosis
Enduring the various symptoms caused by cirrhosis was no picnic.
Tom was under strict doctor’s orders to drink no more than 3 glasses of water per day, due to his ongoing battle with fluid retention, so he was thirsty all the time. And even though he was limiting his water intake, fluid would still collect in his abdomen, which had to be drained by paracentesis.
He was also too tired to enjoy his favorite hobbies: golfing and fishing.
“I was so tired just breathing,” says Tom. “And thought, gosh, if I do catch a fish, I’ll be too tried to get him off the hook.”
But the itching is what really drove Tom crazy. Since his body wasn’t properly processing fluids, his skin was incredibly dry and flaky.
“Nothing compares to the unrelenting, 24/7, wake-you-up-in-the-middle-of-the-night itching,” he says.
There were also hallucinations. Once, Tom saw smoke filling the room and another time he thought he saw a strange woman who appeared on his balcony.
“It had to do with the salt imbalance in my brain,” shares Tom. “I often shook my head for five minutes after waking up to figure out where I was.”
A COVID complication
On March 13, 2022, a little over two years since his diagnosis, Tom got the call he’d been waiting for: The transplant team had a liver for him. But when Tom went through the presurgical check-in process, his COVID-19 test came back positive, which meant the surgery wasn’t going to happen after all.
Once he recovered from COVID-19, Tom was back on the transplant list and going to paracentesis appointments more often. It was clear he was getting sicker.
“They were taking eight liters of fluid out of me twice a week,” says Tom. “So that’s incredible.”
A turn for the worst
Tom’s sodium levels became dangerously low, which is a complication associated with advanced cirrhosis that can lead to rapid brain swelling, seizures and even death.
Tom went to Atrium Health Carolinas Medical Center for treatment, where he received medication to raise his sodium levels. But after two hours, it became clear the medication wasn’t working.
Then, Ashely Wagner, a member of Atrium Health’s surgical transplant team, walked into Tom’s room. He was disoriented but still remembers this moment clearly. She explained that there was a donor who was a good match for Tom with his same blood type – and that he would be getting a liver later that evening.
“I just broke down crying,” says Tom. “I couldn’t believe it. I still have a hard time believing it. It’s like winning the lottery, I guess.”
Surgery success
On June 8, 2022, about four months after the first transplant attempt, Tom got his liver.
While in the operating room, the transplant surgery team worked with the anesthesia team to manage his sodium to a safe level, leading to a successful surgery.
Tom was discharged from the hospital eight days later.
At a follow-up appointment, DeLemos told Tom they were really concerned about him before he got his liver. The amount of fluid his body was producing toward the end indicated he only had about 10 to 14 days left to live.
“Without a willing organ donor at that time, he may have died,” says Dr. Vincent Casingal, chief of the division of abdominal transplant surgery at Atrium Health.
“I’m as blessed an individual as you’ll talk to,” says Tom. “I had family, friends and church groups praying for me, sometimes all together at a certain time. It’s just incredible. And I guess there’s a reason I’m here. He’s not done with me yet.”
Tom also credits his care team with his second chance at life.
“They were spectacular, from Dr. DeLemos and his team to every person who worked on me,” says Tom. “And I love a person with a good sense of humor. They were spectacular in that sense too. All just top of the line.”
These days, Tom is feeling great, and this fall he’s looking forward to getting back to golfing and fishing. He also can’t wait to take his grandbabies fishing and hopes to instill his love for the sport in them.
Thanks to the generosity of a liver donor, Tom has a second chance at life. More than 100,000 people are waiting for lifesaving organ transplants in the United States. One donor can save up to eight lives, restore sight to two people through cornea donation, and heal more than 75 lives through tissue donation. Visit DonateLife.net to learn more about donations and to register to be a donor.
Learn more about liver transplant care at Atrium Health.
