Before any talk of transplants, Lauren Toby happened to see her husband D.J.’s organ donor card in his wallet, and they started discussing their shared blood type. They didn’t know at the time how critical that compatibility would be.
After Lauren gave birth to their son Donovan, now 2, her rare primary sclerosing cholangitis, or PSC, led to the perfect storm of complications, and she needed to be put on a liver waitlist, for fear of contracting bile duct cancer. But they decided to go another way — with a living donor — which D.J. happily signed up to be. The liver transplant surgery was Jan. 24.
Lauren and D.J., who are both 36, have known each other since their Oceanside High School days, and always had a connection, but didn’t pursue a relationship because of their friendship. Sort of like Monica and Chandler of “Friends,” they said.
But eventually the spark ignited, and in their late 20s they began dating. They will celebrate their fourth wedding anniversary this summer, and they now live in Baldwin in Lauren’s grandparents’ home, which was a bit of a fixer-upper.
Lauren works at an engineering firm in Lynbrook where she manages construction permits. D.J. works around the world as a harbor pilot for Interport Pilots, which takes him away from his family.
When Lauren’s PSC worsened after Donovan’s birth, D.J. couldn’t stop thinking about the possibility of being away when she got the three-hour notice she’d need to get to the hospital for a transplant, with him not being able to make it to shore.
Lauren was diagnosed with PSC eight years ago, but was told it was a “very slow problem.” The illness causes the body to constantly attack the bile ducts to the point of scarring, and when a scar closes, it can prevent bile from flowing properly through the liver, which can lead to the loss of liver function. Researchers estimate that five to 16 out of every 100,000 people have PSC.
The Tobys were way down the liver transplant list in January 2022, because although Lauren’s disorder was serious — with a Model For End-Stage Liver Disease, or MELD, score of 14, over twice the normal, as well as jaundice, weight loss and severe itching — it wasn’t serious enough for an immediate transplant.
So, instead of letting fate decide the time and place, they took her off the list a month later, and took destiny into their own hands. A doctor had told them about the living donor option in which a portion of D.J.’s liver would be transplanted to Lauren, and both organs would eventually grow into healthy livers, and D.J. was immediately interested.
“D.J. says it was like a no-brainer decision,” Lauren said of the surgery, but “I found it absolutely terrifying, because we both have this small child, and both parents are undergoing major surgery.
“So it’s obviously, like, a very hard decision to make, but it definitely seemed like the right thing for us.”
And D.J., a former All-American lacrosse player, is in great shape, and another organ, from a deceased donor, will be available to someone else who desperately needs it.
Dr. Robert Brown, the chief of gastroenterology and hepatology at New York- Presbyterian/Weill Cornell Medical Center, said that having a living donor, instead of a deceased donor, shortens the recovery period. “For the donors, if they have a laparoscopic donation, they stay in the hospital five to seven days, and for open procedures, a little longer than a week,” Brown explained.
“The amazing thing is that the liver regenerates to full size in both in one to two months,” he said.
35 percent of D.J.’s liver was transplanted to Lauren on a Tuesday, and he was sent home on a Saturday. They will both will make a full recovery in a few months’ time, but now they are dealing with restless nights as their organs settle back into place.
Having a “piece” of her spouse in her 24/7 is a warm and fuzzy feeling for Lauren. “I love that a piece of him is in me,” she said. “It just, like, makes us more connected than we were before. I feel like it all sounds very cheesy, but it’s true.”
“I’m limited, but I’m pretty mobile,” D.J. said. “They encourage you to walk and just do daily tasks, no heavy lifting, because the easiest way to get back to normal self is just doing normal things.”
The transplant will give Lauren a type of reset, her doctor told her, as if she hadn’t been sick in the first place. That’s a comfortable feeling, considering that PSC currently has no therapeutic drug available.
The Tobys said the peace of mind is well worth what they went through, and there’s no more worrying about who would raise Donovan if Lauren were sick all the time.
“We’re so, so lucky that this was an opportunity for us, and obviously I’m so lucky to have a husband willing to do it,” she said.
D.J. added that he can now “go fishing whenever I want.”
Lauren described planning the operation as if she were planning the worst wedding ever.
But the doctors helped from start to finish. “It was really amazing how, like, seamless the whole operation is,” she said.
“You realize that you’re going to one of the best hospitals in the country — like you realize this is why we live in New York,” D.J. said. “Because you have the best health care — this is why you pay the high taxes and put up with traffic, so you can have the best doctors in the world.”
Since Lauren’s PSC is still being researched, she said she’s always looking for some type of meaning in the ordeal.
But coming out of the surgery and being able to relax and finally spend quality time with her family, she said, has helped her find that meaning.
“D.J. gave me a piece of his liver — like, this horrible thing became this very beautiful act of love,” she said, “and the whole thing was very, like, moving for me, because I’ve never had anyone show love to me in quite the same way.”