Leti told me her story over the phone.
Some time in 1996, Leti’s friend and godmother to her second grandchild, Liz, went into renal failure. Leti knew right away that she wanted to help and offered to do so. For better or worse, Liz’s cousin stepped forward as well, and since he was a much closer match than Leti, they went with him.
“In a way, I’m glad,” Leti laughs, a flicker of humor in her voice. “Back then, they didn’t do all the laparoscopic stuff. When I saw his scar running from his back around his side–he looked like he’d been in a street fight! So even though I would have, I’m glad I didn’t have to deal with that.”
Unlike a lot of people who sign up to donate and then are weeded out by another donor, Leti would have another chance to help Liz. Not ten years after her first transplant, Liz caught an infection. Even with immunosuppressant drugs, her transplanted kidney didn’t hold up. In the mid-aughts, Liz began dialysis.
In December 2010, Liz was admitted to the hospital. Even with the dialysis, her kidney function had been dropping drastically. Leti returned to the east coast to visit her lifelong friend during the Christmas season. She remembers seeing Liz’s arm, bruised and discolored from the dialysis stent. She knew then that if her friend ever needed another kidney, Leti would give her one. It didn’t take long for her to make good on her promise to herself.
“While I was there, the doctor came into the room and told Liz that her kidney function was down to ten percent and that it was time to consider having another transplant. I said I’d do it right away. They asked me if I was sure, and I thought, I’ve had fifteen years to think about it–of course I’m sure!”
On the six-point match scale, Leti was only a one-point match. Unlike fifteen years earlier, advancements in technology allowed her to continue through the process with only the blood match. Two months later, Leti began the full-scale testing process.
It took two months for Leti to be approved for donation. At the time, in April 2011, Leti was working for a school district in the central office. She was overseeing a college readiness program, which spilled over into the first days of summer, which meant she wouldn’t be able to donate until then.
“It was July. I remember going to work the Monday after the summer program ended to close out any loose ends. The next day I went in for pre-op testing and by the end of the week, I’d given my kidney to Liz.”
Liz especially remembers a coincidental moment from that week.
“While I was waiting for one of the tests, a young man in the waiting room told me about how his brother needed a kidney. This young man had lost forty pounds in the three months in order to be able to donate to his brother. Later, he introduced me to his brother. He looked ashen and unwell–really, pretty bad. It was a surprise to me because even when she was on dialysis, Liz never looked quite that unhealthy.
“On the day of the surgery, I walked into surgical admissions, and who do you think I saw! It was the same young man and his brother. Even though they were pretty much strangers, it was really nice to see them. The donor and I joked that we’d race to see who finished donating first. We had a good laugh about that.
“After the surgery, when they got me up and walking around, I went to visit the young man’s brother. I didn’t even recognize him. His cheeks were rosy again, and the ashen color had disappeared from his face. Liz was the same way. It was so good to see them both looking so healthy and full of life–and so quickly.”
By the time Leti saw her, Liz’s new kidney was functioning just fine, but the reality is that it took a few hours for it to really take. That was to be expected since Leti was only a one-point match. The surprise was that as time went on, the doctors told Liz that her new kidney was working better than the kidney her cousin had donated fifteen years earlier–and he was a much closer match.
“It just shows that the technology has come a long way and there really aren’t as many barriers to donating as there used to be.”
During the testing process, Leti had some anxiety from time to time–fears about her future health, death, and plenty of other normal thoughts that go through the head of many in-process donors. She felt supported by the transplant staff and by the fact that Liz had already had a transplant, so Leti had a better idea what to expect.
“I did have some people try to discourage me through the process, asking me why I’d do something like this for someone who wasn’t a family member. It would have been nice to have more support in that regard.”
Like many donors–and especially donors without the full support of their families and friends–Leti suffered both feelings of isolation as well as a sort of postpartum depression after the surgery.
“I’d had so many people to talk to during different appointments and things, but afterwards, it was very quiet. Even the transplant team I’d worked so closely with for six months sort of faded away. I’d hoped the hospital would offer some kind of donor support group, but they didn’t, and I didn’t really know where to seek one out. In fact, I think you’re the first donor I’ve spoken to in five years.
“As for the postpartum, it was like my body knew something was missing and was trying to tell me so. It just felt so strange at first to know that this organ I’d lived with all my life, that was a part of what kept me alive for so long, was gone.”
In general, Leti has no regrets. “Maybe 1% of me wishes I hadn’t donated, but only because of my own health. I worry that my remaining kidney will stop functioning one day, or whether I’ll wish I’d done things differently when I’m older. I’m actually more nervous now than I was before the surgery, but I think that’s to be expected.”
Asked if Leti had any advice for potential donors, she said, “Don’t make the decision lightly. It’s not just the physical recovery, but the financial expense, the time you’ll have to take, the time you’ll ask of others, the emotional and mental challenges. They’re all very serious considerations.
“In the moment, you really want to save the life of someone you care about, but you really have to think about how it’s going to affect you later, even if only so that you know what you’re getting into before you donate.”
Leti’s struggle with isolation and postpartum depression post-op really resonated with me. I also felt like my transplant team sort of disappeared after the donation, and when I did go for check-ups, they were quick to say all was fine and send me off. I frequently had and still have to insist that something needs to be investigated more thoroughly. Thankfully, a local support group has formed here in New York, but in other places with less population density, donor support remains a very real concern.
When I donated, I didn’t think it would affect my psyche in any way, but it did and it still does. You have all these people telling you what a wonderful thing you’re doing, but when the dust settles, it sometimes feels like people have forgotten what you’ve done, especially if you don’t have family and friends nearby. It’s something that requires love and support to get through unscathed.
To that end, it’s important for potential donors to think about everything and to listen to those of us who’ve been there–donating will change you in ways you can’t anticipate, maybe can’t even articulate. Be sure that you’re ready for the unexpected. Of course I still encourage donation, as does Leti, but one place where she and I agree is that you really want to know as much as you possibly can before you hop onto the O.R. table.
Do you have a transplant story you’d like to share? Contact me and I’ll get back to you within a day or two!