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Stephanie Merritt was running out of options.
The rare liver disease she was diagnosed with over 25 years ago was worsening at an alarming rate. Three bouts with different COVID variants and pneumonia had each left her more drained than the last.
鈥淢y liver said, 鈥業鈥檓 done,鈥欌�� said Merritt, a 45-year-old mother of two who lives in Gainesville.
She was sleeping 12 hours a day, sometimes more, she recalled, and turning 鈥測ellow as a minion鈥� from jaundice caused by the disease, Primary Sclerosing Cholangitis (PSC).
Doctors don鈥檛 know what causes the disease, which inflames the bile ducts in the liver until they鈥檙e narrowed and blocked. Even worse, there鈥檚 no true cure, just ways of managing it.
Last fall, Merritt received the message from the doctor who鈥檇 been treating her for over a decade: Her liver was approaching failure, and she would need a transplant.
鈥淚 can鈥檛 manage it anymore,鈥� he told her. 鈥淚 can鈥檛 put a stent anywhere anymore. I don鈥檛 have any other treatments.鈥�
A living donor for any organ transplant is a patient鈥檚 best bet, but not everyone can find someone who is a match after the exhaustive battery of tests done on potential donors. Blood tests, X-rays, CT scans, physicals and a tissue-matching analysis all have to come back correctly for doctors to feel confident the transplant will work and the patient鈥檚 body won鈥檛 reject the new organ.
Dozens of family members and friends were tested to see whether they were a match. Even classmates of Merritt鈥檚 oldest son 鈥� a student at Gainesville High School 鈥� went to try to be tested, only to find out they were too young (living donors must be at least 18 years old). More than 40 people were turned away at varying stages, each rejection a new letdown for Merritt and her family.
鈥淚t was stressful,鈥� she recalled. 鈥淎s a mom, the last thing you want is your kids worrying about you.鈥�
鈥業 just couldn鈥檛 get it out of my head鈥�
On Christmas Eve, Jennifer Perilla was very much in the spirit of the holiday. Weeks before, she had read a Facebook post from a woman she didn鈥檛 know but whose daughter was in desperate need of a new liver. It had been shared by a friend of a friend and had been bouncing around Perilla鈥檚 head since she read it, even though she didn鈥檛 know the person who wrote it or the person who needed the transplant.
鈥淵ou see things like that, versions of things like that, but you kind of read it and keep going,鈥� said Perilla, principal at Tyler Elementary School in Gainesville. 鈥淏ut I just couldn鈥檛 get it out of my head.鈥�
That post had a link to a preliminary MedStar Georgetown Hospital screening form. That night, Perilla filled it out and sent Merritt a message, unsure what etiquette dictates in such a situation. She asked Merritt if she鈥檇 want updates about the process or if she wanted more privacy, not knowing how many people had already started the testing process.
鈥淚 was kind of thinking about false hope, and that by the time you have your family and friends asking the public for help, you鈥檝e probably gone through your immediate family and your best friends and co-workers,鈥� Perilla said. 鈥淪o I did want to be respectful that those closest to her have probably been really devastated to learn that they couldn鈥檛 be her donor.鈥�
To her surprise, Merritt responded enthusiastically, asking for as many updates as Perilla could share.
鈥淚 didn鈥檛 want to sound crazy,鈥� Merritt told InsideNoVa. 鈥淚 remember just feeling so grateful and so thankful. I told her, 鈥業 don鈥檛 want to overwhelm you.鈥欌��
They didn鈥檛 know it then, but Jennifer would turn out to be the perfect match.
鈥楽he is essentially me鈥�
Unlike in kidney donations, liver donations rely on the organ鈥檚 regenerative properties. To be a donor, a person鈥檚 liver must, in essence, be big and healthy enough to sustain two people for about three months while the pieces regenerate. Up to 60% of a donor鈥檚 liver is transplanted into the recipient, replacing the diseased liver. Then, both pieces hopefully regrow into full, healthy organs.
As the weeks went by and Perilla passed several rounds of testing, she and Merritt finally met at the Hilton Garden Inn bar in Haymarket for mocktails. The two hit it off, realizing they had more in common than just both being immersed in the transplant process.
鈥淚 just couldn鈥檛 get past the fact that she is essentially me, that she is my age, she has two kids, that this could have been any of us,鈥� Perilla said. 鈥淎ny of us could have been in the unfortunate position to have just been born with a rare disease, and you don鈥檛 get control over that. You don鈥檛 get say over that, and all of a sudden you鈥檙e in a position where you鈥檙e asking for help.鈥�
She remembers receiving the call on March 14 telling her that she had officially been named the donor. Perilla immediately called Merritt to share the news. By that time, the two had been sharing messages almost every day about the process, becoming fast friends.
There was still one final test, though: a crossmatch in which blood from the donor and recipient are mixed to make sure that the recipient鈥檚 cells won鈥檛 attack and kill the donor blood cells. It came back negative, meaning the two were compatible.
Even after months of getting to know Perilla, a part of Merritt still couldn鈥檛 fully wrap her head around why she would do so much for someone who had been a stranger. On the day of their surgeries in April, the two convinced hospital staff to let them see each other just before going into the operating room.
鈥淚 thought, 鈥極h my God, she showed up,鈥欌�� Merritt remembers. 鈥淪he鈥檚 a really strong, strong woman. She touched more people than just me.鈥�
About eight hours later, the procedure was complete.
鈥楢nyone can do it鈥�
In sharing her story, Perilla doesn鈥檛 sugarcoat things. The process was arduous, surgery comes with risks for even the healthiest people and the recovery was long. Luckily for her, it has gone relatively smoothly, but she still had to take an extended leave from Tyler Elementary.
But Perilla also says that there鈥檚 no part of her that regrets choosing to fill out that form on behalf of a total stranger last Christmas, or following up for the months of doctor鈥檚 visits and tests. Not only does she not regret it, she鈥檚 been encouraging anybody who can to see whether they might be eligible to donate.
鈥淢y biggest hope and goal with all this is to normalize helping other people,鈥� Perilla said. 鈥淧eople are like, 鈥榃hy would you do that for someone you don鈥檛 even know?鈥� 鈥� Or they鈥檒l say, 鈥榊ou鈥檙e such a hero.鈥� And while that is so kind and I would never want to sound like I鈥檓 not grateful for their kindness, 鈥榟ero鈥� makes it sound like only a few people can do it, instead of no, literally if you鈥檙e healthy enough and you match, anyone can do it.鈥�
According to the United Network for Organ Sharing, 103,000 people currently need an organ transplant in the U.S. So far this year, 11,477 people have donated. People can register to be a potential organ, eye and tissue donor with Donate Life America at donatelife.net. The MedStar Health website also has information about becoming a liver or kidney donor locally.
鈥淭his is literally a life-and-death situation for another human being,鈥� Perilla said. 鈥淭hey shouldn鈥檛 owe me anything or I shouldn鈥檛 have to somehow decide they deserve it.鈥�
