MOUNT JEWETT — Mount Jewett resident Toni Pearson has been struggling with health issues for nearly 20 years and was being treated at first for acid reflux until an ordered biopsy revealed she suffered from a genetic fatty liver disease known as nonalcoholic steatohepatitis, or NASH.
Pearson’s first encounter with the disease — which involves liver inflammation and damage caused by a buildup of fat in the liver — was through the struggle her mother faced before passing away in 1991.
“She was down in Pittsburgh and she was so far gone tha … and back then they didn’t do living donors and they had just really started liver transplants and all her organs just shut down. It was just too late,” said Pearson.
Pearson said the disease affects the liver’s ability to filter toxins out of the system and eventually turns into cirrhosis. As a result, she lives with constant fatigue, fainting spells, dizziness, confusion and pain.
“The liver doesn’t divert fluids like it’s supposed to so it all builds up and I have to go once a week to Warren and they drain ten to twelve pounds of fluid off me every week,” said Pearson. “And then when the fluid builds up it puts pressure on my diaphragm and my lungs and I get very short of breath. And I tend to have dizzy spells and pass out.”
Pearson recommended that those with chronic fatigue and symptoms like hers to not hesitate seeking medical advice and request a liver profile blood work test. She added that some people could become jaundiced, citing her mother’s case.
“Just any time that you start to get a feeling of overwhelming fatigue that maybe a month ago you didn’t have, go and ask for a liver profile just to be on the safe side. Definitely go to a liver specialist and then they’ll send you forward to someone else,” said Pearson.
Stemming from a post on Facebook seeking anyone with type O blood willing to get tested to be a potential donor, Pearson’s hero and long-time friend, Sally Peterson of James City, stepped up. The two had been out of touch for a little while, but their bond was still amazingly strong.
“I saw it on Facebook that she was looking for somebody with O blood type and it didn’t matter whether it was positive or negative,” said Peterson. She added, “My mom died in ‘98 with bone cancer so shortly after that I had decided to become a bone marrow donor.”
Peterson described her choice to become a marrow donor, “It’s like something hit me at one o’clock in the morning. I’ll never forget it because it was odd. I’m bawling. I guess I was thinking of my mom and I decided to become a marrow donor so I knew I had a donor card but didn’t remember what my blood type was.”
Peterson said she looked at her card after seeing Pearson’s post and discovered she was indeed type O. From there, she contacted Pearson’s daughter, Tracy, to inquire how she could help.
“There was an overwhelming sensation to do this,” said Peterson, to which Pearson added, “She never hesitated.”
“No, I never ever hesitated, second guessed. It was like once I made that decision it was forward, on,” finished Peterson.
To let her friend know of the good news, Peterson gave an impromptu Valentine to Pearson this past Valentine’s Day as Pearson’s significant other, Ed Fisher, caught the act on camera. In the card, the phrase, “My Heart is all Yours” had the word “heart” crossed out and “liver” written above it.
At first Pearson smiled, but then Peterson asked, “What are you doing March 13th?” to which Pearson replied, “Nothing, why?” Then Peterson asked the big question, “Do you want to have surgery, because I’m approved.”
As both ladies embraced, tears fell from everyone’s faces. Among those bearing witness to this selfless act of kindness and friendship were Pearson’s daughter, Tracy, and Fisher.
Both ladies were hoping that by sharing this story, awareness for organ donation could be obtained.
“It’s not as hard and complicated as people think,” said Peterson. “The medical portion, the medical bills aren’t coming out of my pocket they’re billed to her insurance so her insurance pays for this.”
“Just in case people are deterred by thinking ‘well I don’t have the money, you know my liver is great, I’m healthy but I don’t have the money’, No, you can do this,” added Peterson.
The website, www.donoralliance.org, provides statistics for organ donation that stress the current need including that nearly 7,000 people die each year due to a lack of organs for transplant and that every ten minutes a new name is added to the waiting list. That totals more than 52,000 new patients per year.
Additionally, the site indicates that of the patients waiting for a transplant, 14 percent are in need of a liver like Pearson and another 81 percent are waiting almost two and a half years for a kidney. The great part of those two organs is that you can donate them while you are alive along with a lung, intestine or pancreas. This is referred to as a living donation.
Adding to Pearson’s story and debunking a common donation myth, both ladies went on to say the testing was also covered by Pearson’s insurance. The only responsibility on the donor is the post procedure expenses such as follow-up medical checks and resulting medical expenses stemming from any complications or infections.
The Donor Alliance site outlined some additional myths and facts associated with organ donation, including the fact that many people never get around to doing it or just don’t think about it; people thinking their families will decide in the event of their death; that health issues prevent a person from donating; or that old age prevents a person from being a potential donor.
For more information on organ or tissue donation, visit the website www.donoralliance.org, a local Department of Motor Vehicles center, or discuss the desire or options with a family doctor.
Following the procedure, Pearson will require 24-hour supervision for approximately two to four weeks and will be required to stay near UPMC Montefiore in Pittsburgh, where the surgery will take place. The stay and associated cost will be on Pearson and her daughter.
To show his support and love, Fisher is organizing a benefit spaghetti dinner at the Mount Jewett Volunteer Fire Department hall, where he is an active volunteer. The dinner will feature a disc jockey, live music, giveaways and a Chinese auction.
Those interested in attending can come to the firehall, located at 1 Gallup Ave. in Mount Jewett, from 5 to 9 p.m. March 11. The price per dinner is $10 for adults and $5 for children under age 12 and includes spaghetti, salad, dessert and refreshments.
