Christina told me her story via telephone.
There is a strange, but not uncommon phenomenon amongst many kidney donors, which can best be described as a premonition. Many donors I’ve spoken to, myself included, experienced gut feelings that they would be the ones to make the donation, even if they weren’t sure they wanted to yet. Christina’s story begins with such a premonition.
Christina works as mortgage consultant in the New York area. She’d never before met anyone who needed or received a kidney until one day she met a fellow agent who said she was only alive because her husband had donated a kidney to her. The two women bonded immediately, and Christina, having never given kidney donation a thought before, was suddenly compelled to get involved. She felt a particular calling to helping a young child. Her friend suggested she look up a Facebook page called Kidney for Lilly.
“I went home and looked up the page,” recalls Christina. “When I saw Lilly, I had an overwhelming sense that I was going to be the person to help this little girl. I e-mailed the transplant coordinator immediately. I even e-mail Lilly’s mom. I told her Lilly was an angel and that I was going to help her.
“I had such a wonderful childhood growing up, and I have a son who had a wonderful childhood. I wanted Lilly to have a chance at the same thing, to grow up like a normal child.”
Christina began the testing process, which in and of itself was a testament to her devotion, but also to her sense that something else, something ethereal or otherwise beyond description, was giving her the courage and contentment she needed to get through. “I don’t like needles,” she said, “I don’t even really like doctors. But when I went to the hospital for the testing, I had a different mindset. I don’t know if it was a maternal instinct in me or something else, but the needles, the doctors–nothing bothered me except for the contrast medium for the CT scan. They had trouble finding a vein, and that was almost too much for me, but I made it through!
“At one point, they flip-flopped on my compatibility, which was draining both mentally and emotionally. It sounds strange, but it was such a relief when I was finally approved.”
Throughout the process, Christina had grown very close with Lilly’s family, but as the surgery date approached, she sensed a subtle distance had come between them. It turned out that Lilly had had a few false starts with other potential donors. “I think her mother was afraid that I’d back out at some point so she didn’t want to get her hopes too high. It’s a difficult situation to be in.”
But Christina did not back out. On November 12, 2014, two weeks after leaving her Long Island home for preop testing in Pittsburgh, where the surgeries would take place, Christina donated her kidney to Lilly. (An interesting detail to the surgery is that Lilly and Christina were actually at different hospitals, so Christina’s delicate organ had to be transported across town to a children’s hospital where Lilly could be better cared for.)
She struggled through the first stages of recovery a bit more than she’d anticipated. “At one point, sitting in the hospital, I was in so much pain I actually thought that if I could turn back time, I might not go through with it. Of course, I have no regrets at all, but when you’re in the hospital healing from something like that, it’s easy to let your thoughts run away with themselves.”
As is often the case, the hospital ushered Christina out as soon as they could, which was just three days after the procedure. “As a donor, I felt really alone, especially with Lilly being in the other hospital. My friends and family were all so afraid for me, which I appreciated, but sometimes it made me feel isolated. But I had a friend who stayed with me the entire time, and Lilly’s mom did come to visit, which was nice.”
With apparently no end to Christina’s charity, after three days in the hospital, she got dressed, went to the store to buy a gift, and then delivered it to Lilly at the children’s hospital. “I wish they’d given me an extra day in the hospital, but since they were kicking me out, I wanted to see Lilly. Going there took a lot more strength than I’d expected,” she said. “Afterwards, I was a wreck. It was a very emotional time going home.”
Christina sacrificed more than just her body. Because the procedure was being performed in Pennsylvania, Christina had to relocate there for two weeks for preop testing. Because of the serious lack of support for kidney donors in our healthcare system, all of the expenses were Christina’s personal responsibility. “Lilly’s mother started a GoFundMe campaign to help with the costs, which was wonderful. Still, it was a financial setback. I didn’t make any money while I was out, and I spent a fair deal to make this happen.”
Finances aside, Christina and Lilly are both doing very well more than a year on. Lilly is living a mostly normal life for a girl her age, and Christina has finally regained most of the energy she lost during the donation. “There isn’t a day that goes by I don’t worry that I might develop kidney disease,” Christina said, “but at the same time, I would do it all over again. I’m fortunate to be very close with Lilly and her family, and watching her thrive makes it all worth it.”
It’s been interesting for me to hear of so many donation stories that seem to be driven by higher powers than what we know here in this life. I don’t subscribe to any particular religion (anymore) but it’s hard not to wonder when you have someone like Christina who’d never thought about kidney donation before, and then all of a sudden she feels it’s her calling to help. It’s encouraging to know how common that is, because it suggests there are many, many more donors out there than any of us might think.
Christina’s story, though, also highlights one of the reasons that those donors don’t always come forward. That Christina had to pay so many out of pocket costs to voluntarily put herself at risk to save someone else’s life–it’s absurd. Stories like Christina’s are the reasons that organizations like Waitlist Zero exist. Donors need advocates. Donors need support. It breaks my heart to hear that Christina was lonely during initial recovery, but I can relate–I’ve rarely felt so along as I did in that hospital bed. I hope her story is a testament to these needs and that people will, by hearing stories like hers, begin to understand that all the love a donor pours out through his or her action needs refilling from the support and care of others.
Do you have a transplant story you’d like to share? Fill out the contact form and I’ll get back to you within a day or two!