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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.
āMy liver said, āIām done,āā 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 āyellow as a minionā from jaundice caused by the disease, Primary Sclerosing Cholangitis (PSC).
Doctors donāt know what causes the disease, which inflames the bile ducts in the liver until theyāre narrowed and blocked. Even worse, thereās no true cure, just ways of managing it.
Last fall, Merritt received the message from the doctor whoād been treating her for over a decade: Her liver was approaching failure, and she would need a transplant.
āI canāt manage it anymore,ā he told her. āI canāt put a stent anywhere anymore. I donāt have any other treatments.ā
A living donor for any organ transplant is a patientās 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 patientās body wonāt reject the new organ.
Dozens of family members and friends were tested to see whether they were a match. Even classmates of Merrittās oldest son ā a student at Gainesville High School ā 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.
āIt was stressful,ā she recalled. āAs a mom, the last thing you want is your kids worrying about you.ā
āI just couldnāt get it out of my headā
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 didnāt 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 Perillaās head since she read it, even though she didnāt know the person who wrote it or the person who needed the transplant.
āYou see things like that, versions of things like that, but you kind of read it and keep going,ā said Perilla, principal at Tyler Elementary School in Gainesville. āBut I just couldnāt get it out of my head.ā
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 sheād want updates about the process or if she wanted more privacy, not knowing how many people had already started the testing process.
āI was kind of thinking about false hope, and that by the time you have your family and friends asking the public for help, youāve probably gone through your immediate family and your best friends and co-workers,ā Perilla said. āSo I did want to be respectful that those closest to her have probably been really devastated to learn that they couldnāt be her donor.ā
To her surprise, Merritt responded enthusiastically, asking for as many updates as Perilla could share.
āI didnāt want to sound crazy,ā Merritt told InsideNoVa. āI remember just feeling so grateful and so thankful. I told her, āI donāt want to overwhelm you.āā
They didnāt know it then, but Jennifer would turn out to be the perfect match.
āShe is essentially meā
Unlike in kidney donations, liver donations rely on the organās regenerative properties. To be a donor, a personās 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 donorās 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.
āI just couldnāt 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,ā Perilla said. āAny of us could have been in the unfortunate position to have just been born with a rare disease, and you donāt get control over that. You donāt get say over that, and all of a sudden youāre in a position where youāre asking for help.ā
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 recipientās cells wonāt 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 couldnāt 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.
āI thought, āOh my God, she showed up,āā Merritt remembers. āSheās a really strong, strong woman. She touched more people than just me.ā
About eight hours later, the procedure was complete.
āAnyone can do itā
In sharing her story, Perilla doesnāt 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 thereās 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 doctorās visits and tests. Not only does she not regret it, sheās been encouraging anybody who can to see whether they might be eligible to donate.
āMy biggest hope and goal with all this is to normalize helping other people,ā Perilla said. āPeople are like, āWhy would you do that for someone you donāt even know?ā ā¦ Or theyāll say, āYouāre such a hero.ā And while that is so kind and I would never want to sound like Iām not grateful for their kindness, āheroā makes it sound like only a few people can do it, instead of no, literally if youāre healthy enough and you match, anyone can do it.ā
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.
āThis is literally a life-and-death situation for another human being,ā Perilla said. āThey shouldnāt owe me anything or I shouldnāt have to somehow decide they deserve it.ā
