WASHINGTON, D.C. — For Meghan Smith, the journey to get to her 20’s was far from easy.
“I started getting sick when I was about 19 years old,” she said. “And I went to a bunch of different doctors, and they really couldn’t figure out kind of what was going on with me.”
Then, her younger brother got sick, too. Doctors discovered an unusual genetic anomaly that required both to get liver transplants.
Smith’s eventual donor would be her uncle, who was a perfect match. Despite the support of her family, she still felt isolated.
“Unless you’ve been in this really unique situation, it’s hard to understand what is going through and what that person is going through. Not only physically, but also just mentally,” she said.
In the U.S. alone, there are currently around 114,000 people awaiting an organ transplant. About 39,000 patients get a transplant each year. The rest of them wait. Every day, though, 20 people die waiting for a transplant.
Now, a new online platform called TransplantLyfe is looking to offer hope.
“It’s not just about surviving with a transplant. It’s about thriving,” said Karin Hehenberger, the founder of TransplantLyfe and a double-transplant recipient herself.
Hehenberger partnered with the biotech company CSL Behring to start TransplantLyfe, in order to help connect transplant patients with resources and each other.
“Most people who go through the transplant process feel very much alone in the process and confused,” Hehenberger said. “And this is a way for them to connect, to share experiences and learn from one another.”
It’s useful in the era of COVID-19, which has further isolated people.
Even beyond the pandemic, though, transplant patients are often on immuno-suppressants and have to be careful with whom they interact with in-person.
For Meghan Smith, having a virtual way to find people her own age, who are dealing with transplants, is making a big difference.
“I’m just in a very different place when it comes to working and dating and all that kind of stuff,” she said. “So, being able to connect with other people in my age group to discuss these things has been so nice, especially during the pandemic when you can’t connect with other people.”
It’s a way of finding a group of people to lean on, while on the road to recovery.