What It’s Like To Spend Your Late 20s On Dialysis, Then Be Saved By A Gift
Editor's Note: This story originally ran as part of Sound Effect's inaugural episode which aired Jan. 10, 2015.
Leila Mirhaydari’s first symptoms were the kind of thing you might easily ignore if you’re a normal, active 27-year-old. It was that kind of general, low-level sick feeling — getting tired easily and bruising in spots where you don’t remember getting hurt.
Mirhaydari was living in Pullman, Washington, studying wildlife ecology at Washington State University. She loved to get outdoors and hike, and she didn’t normally pay much attention to her body’s mumbled complaints.
But then she woke up one morning to discover her vision was acting up. It was blurry, and getting worse.
“I had big gray spots in center of my vision, to the point where I couldn’t see faces anymore. I couldn’t read my own writing,” she said.
Mirhaydari got herself to an optometrist who delivered the first bit of disturbing news: Her eyes were bleeding. Alarmed, she went to the hospital for a series of tests.
“The physician came in, sat down quietly and told me that my kidneys had failed,” she recalled. “I had about 5 percent [of kidney function] left, and they needed to get me to a dialysis center.”
'I Was Just In A Pure State Of Shock'
Peals of laughter shake Mirhaydari’s dark curls as she speaks. She has an effervescence about her, a spark that doesn’t go away even when recounting the most harrowing experiences of her life, such as going into organ failure at age 27.
Healthy young adults don't just go into organ failure for no reason. Mirhaydari has never gotten a good explanation, but she thinks an infection connected with a recent bout with the flu could have been to blame. Whatever the reason, the result was clear: She had no time to waste.
“I was just in a pure state of shock. What do you do when you're just told that an organ system was failing?” Mirhaydari said. “I didn’t know what dialysis was or what my future was going to be, or if I was going to live to see tomorrow.”
Dialysis is a way to have a machine do the work your kidneys normally do. But unlike the organs, which do their job busily and mostly unnoticed, dialysis takes over your life.
There are two main types: First, Mirhaydari had hemodialysis, in which every Monday, Wednesday and Friday she’d head to a center where she would have to sit still in a chair for three to four hours as a machine filtered her blood.
But after a while, she switched to a home-dialysis method called peritoneal dialysis, which she could do herself. For that, she had a port installed in her abdomen, which she’d connect to a machine every night while she slept — “or tried to sleep,” she said.
No More Carefree Days: A Strict Nightly Regimen
Every night, Mirhaydari would flip her machine on two or three hours before she planned to go to bed. She’d connect bags of sterile sugar water — about 9 liters a night — and wait for them to warm up to body temperature. Just before bed, she would scrub up, clean her port area with a potent bleach solution and link up the tubes to let the liquid flow. The machine would flood her abdomen and drain it off, buzzing and clunking, for the next eight hours.
If she was exhausted, she couldn’t just flop on the couch and fall asleep. If she needed to wake up early for an appointment, she’d have to back-time it the night before to be sure she got her eight hours in. If she wanted a glass of water in the middle of the night, she’d have to think of it before she went to bed.
“Once you hook up to your dialysis machine, you really have maybe enough tether to get to the bathroom. That’s it,” she said.
And pumping liter after liter of fluid into your abdomen is not exactly soothing.
“I would normally have about 2 liters in my abdomen at one time, so that’s a lot of fluid. I don’t have a huge abdomen. Sometimes I would feel like I would look like I was six months pregnant, but it would just be all fluid that would be in my stomach,” she said.
Mirhaydari did this routine every night for three years — for her entire late 20s. She couldn’t go camping or eat whatever she wanted; she couldn’t live like a carefree young person.
“I was definitely jealous of a lot of my friends who would go out and have a good time,” she said. “It was hard at first, just kind of going through a mourning process, of losing something and a part of you.”
'How Do You Ask Somebody, ‘Hey, Can I Have Your Kidney?’'
All the while, Mirhaydari was waiting for a new kidney.
She registered for a transplant from a deceased donor with the United Network for Organ Sharing, but the average wait time in Washington was two to three years (it’s longer now, and nationally it’s longer still: four to five years, according to UNOS). Her blood type and other factors would likely slow things down even more. So she decided to start casting about for a living donor.
That can be an awkward request.
“How do you ask somebody, ‘Hey, can I have your kidney?’” Mirhaydari said, laughing. “Kind of an interesting intro to a conversation.”
Mirhaydari created a Facebook page and hunkered down to wait. Several people came forward, but no one seemed that serious. Until Miles Landis, her step-cousin, came along.
“My stepfather’s stepsister’s son,” Mirhaydari helpfully explained. “For some reason, when he came forward, I just had this gut feeling that it was going to be him.”
There was no blood connection, but there was a human one. And for whatever reason, Landis was certain that he wanted to give Mirhaydari one of his kidneys. After a battery of tests, he was approved in the summer of 2014. Finally, Mirhaydari could see an end to her ordeal.
A Sense Of Elation, Never Mind The Pain
On Sept. 9, 2014, Mirhaydari was decked out in a surgical gown and those plastic bracelets you get at the hospital, being rolled into pre-op.
“I remember getting wheeled into the operating room, and I had this cheesy smile on my face,” she recalled. “The anesthesiologist was like, ‘Are you OK?’ And I was like, ‘Yeah, when I wake up, I’m getting a kidney! I'm going to go to bed, and then when I wake up, I'm going to have this kidney!’ And he’s like, ‘OK, but breathe!’”
Just minutes later, Mirhaydari was falling into a dreamless sleep. When she woke up, there was pain. But there was also excitement.
“I instantly knew, ‘OK, if all went well, there's a kidney in there,”’ she said. She touched her waistline. “Are there stitches? OK, there are stitches! That’s a good thing.”
Mirhaydari’s new kidney worked beautifully, and she was able to stop dialysis immediately. She was wracked with pain for days after, but what she mainly remembered was a sense of elation.
“[I felt] grateful, obviously, for my donor doing this beautiful selfless act of his to help someone else who was in need. He basically saved my life,” she said. “How do you say thank you?”
'Be Grateful That You're Here'
Mirhaydari’s new kidney is, well, big. Her donor is a good-sized guy, and so are his kidneys.
“I’ve fondly named it The Hulk,” she said with a grin.
And the Hulk sits not toward Mirhaydari’s back like her native kidneys; the surgeons put the transplanted organ in front, above her right hip. There, the ample kidney bulges out a bit, giving Mirhaydari a constant, visual reminder of the wondrous little gift from her donor.
Sometimes, when she’s thinking about how lucky she is, she reaches down and touches it with her fingers.
“And sometimes I just kind of hold it, and say thank you,” Mirhaydari said. “Thanks, new friend, for doing all the good work that you’re doing down there!”
And she is lucky. Nationwide, according to the Kidney Foundation, a dozen people die every daywaiting for a kidney transplant. That knowledge has put things in perspective for Mirhaydari.
“Be grateful that you’re here,” she said. “Because a lot of people aren’t.”