When Lexie Libby wheeled herself into her sister’s hospital room, she saw how frail Emma was and couldn’t hold back her tears.
Just days earlier, Emma Libby had donated her left kidney to Lexie — a gift that saved her life.
“It was tough for me after she’d done such an amazing thing to see her so down and out,” Lexie said.
The Sylvan Lake, Alta., sisters had waited nearly two years for the transplant surgery. And after all the obstacles they’d overcome together, neither could believe it had finally happened.
Lexie, 30, has been sick most of her life with focal segmental glomerulosclerosis (FSGS), an autoimmune disease that causes the body to attack the kidneys.
She spent close to nine years on dialysis, and faced numerous challenges before the transplant, including multiple infections and a blood clot in her heart.
It was incredibly difficult to find a donor.
Many of her friends and family were tested but no one was a match.
Emma, now 22, failed the blood pressure component. That’s when she secretly decided to quit smoking and improve her health to save her sister’s life.
“I was just hoping that if I wasn’t able to do it that someone else would be able to, and it didn’t work out that way,” Emma said. “So I thought, I better get it together and give it another try.”
When she was retested, she learned she was a match.
CBC News spoke to the sisters last year, when they were weeks away from the January date for their transplant surgery.
Then the surgery was cancelled — twice.
“I was just a mess, I was so sad,” said Emma. “We felt hopeless at that point because we’d been waiting for so long to get that date.”
Lexie wasn’t healthy enough for the transplant, and still remembers getting the call from her sister, who passed on the bad news.
“It was head to toe disappointment,” Lexie said. “I remember crying probably for the rest of the drive home.”
Her health had deteriorated to the point where it was difficult to even go outside, because her immune system couldn’t fight anything off.
“On top of all the medical struggles and hopeless feeling, [I was worried] because I couldn’t get my life together, I couldn’t work,” said Lexie.
Luckily, she was able to stay in relatively good health during the spring of 2019 and the sisters went in for surgery at the University of Alberta Hospital on July 10.
Lexie recalls feeling excited for her own surgery but “absolutely terrified” for her sister.
“I knew that she was doing this totally voluntarily and I was confident that things would go well, but at the same time, that’s my little sister and she was doing this for me,” Lexie said.
Emma was on the operating table for just under four hours, Lexie for close to six. When Lexie began to wake up from the anesthetic, she felt different almost immediately.
“As painful as it was, it was also thrilling,” she said. “Because the kidney started working while they were still in the middle of surgery, I already felt better … the very next morning, than I’d felt probably my entire life.”
The initial recovery was more difficult for Emma, who had part of one rib taken out to get to her kidney. She couldn’t move around for the first couple days because she was given an epidural to control the pain.
Lexie was used to being in hospitals, but said it was hard to watch her sister go through the experience.
“It was kind of the opposite for us,” she said. “Because I was so sick and the surgery for me was starting to make me healthier, and for her she was already healthy and so the surgery was bringing her down for a while.”
Regardless of the challenges, Emma would do it all over again.
“It was worth it and it didn’t take long before I was totally normal again,” she said.
After recovering in hospital for about a week, Emma returned to Sylvan Lake and her sister moved into a residence at the hospital so she could easily access care while she healed.
Lexie has had her new kidney for eight months, and so far there has been no sign of rejection.
There’s still a chance the underlying condition, FSGS, could return as it is “very aggressive.”
She has been amazed at the amount of time she’s gained because of the new kidney.
“Half my days were spent doing dialysis before. Just trying to keep myself healthy and to have all that gone is really wild to me. It’s a massive change in my life. I was never able to work long hours before, and now I can actually get a regular job.”
She’s aiming to get an office job, which she said will offer her the kind of stability she has yearned for her whole life.
“[I have] more energy and focus and the world seems wide open to me now,” she said.
Since the surgery, Emma has maintained her healthy habits and now has her sights set on a career in nursing.
“Being around hospitals so much as a kid, I always saw that nurses were pretty cool, so that’s probably a lot to do with why I want to do that,” she said. “They were always the ones taking care of [Lexie] and they showed me what they were doing and let me be kind of a part of it.”
Lexie thinks it would be the perfect job for her sister, because “she was always trying to take care of me since she was just little.”
‘A piece of her’
The sisters hope their story continues to raise awareness about organ donation.
For Emma, the donor, it was “amazing to see that something that I was able to [give her] has helped her life so much. And it’s not that hard, you just have to show up and the doctors do everything from there.”
Her sister wants to see other people receive the same gift.
“My life before the transplant was miserable in a lot of ways,” she said. “Now I have so much hope, and I just know there are so many people who can have that too.”
As Emma and Lexie move into the next chapters of their lives and take on new jobs, challenges and relationships, one thing they agree will remain steadfast through it all is the bond they share.
“It’s crazy to me how having a piece of her … makes my life a million times better,” Lexie said. “We’ve always had an incredible love for each other and that’ll obviously never change.”
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