When Amanda Moran was diagnosed with polycystic kidney disease in 2011, she didn’t panic. She still felt fine – the diagnosis had only been triggered by a minor anomaly in her annual bloodwork, not a noticeable decrease in health – and the idea of “eventually” needing a kidney transplant seemed like a bridge she could cross when she came to it. After all, she thought, that would probably be 15 or 20 years in the future. Actually, it was only five.
Amanda was born in Los Angeles and raised in California until she was seven, then in Phoenix for several years. Her family moved to Fayette when she was fifteen and she’s been here ever since, participating in the community, living her life, and, after attending UGA on a violin scholarship, teaching music, first with Clayton County Schools and then, for the last 15 years, at Booth Middle School. She actually launched the orchestra program at Booth and now teaches about 180 students each year.
“Amanda is incredibly dedicated to youth and to music and to bringing the two together,” says her sister, Christina. “The number of lives she’s reached through music is just amazing.”
Amanda also has three kids of her own, a son and a daughter, now 19 and 22, from her first marriage, and son Miles, who’s about to turn nine, with her husband Patrick. Amanda had been 40 when Miles was born and she was deep in the swing of parenting a preschooler when she was first diagnosed. She’d also earned her master’s in curriculum and instruction a few years before and was thriving at her job. The private lessons she taught on the side were both a fun way to work with kids one-on-one and a welcome addition to a teacher’s salary. She was, frankly, too busy to be sick. But then, far more rapidly than anyone had anticipated, her energy began to fade. Her iron levels dropped, she became anemic, and the number of medicines required to keep her functioning grew. Naturally a high-energy person, she found herself needing daily naps and being tuckered out by even the smallest of tasks. Through it all, though, she determined to stay positive.
“She was always very matter-of-fact and upbeat,” says her friend, Julie. “Even when the time came to start looking for a donor, she always believed it would be okay and that it was just something she needed to get done. But that’s Amanda. She’s one of the most positive people I’ve ever met.”
By mid-2014, Amanda’s kidney function had dropped below 15 percent, the threshold for being placed on the donor list. At just 47, she found herself sitting in a class on dialysis because the treatment had become a very real possibility. While she maintained her sense of hope, Amanda certainly had fears. Her youngest son had just started school and the possibility of not being around as he grew up was devastating. She also worried about her older children; her own mother had died from cancer at 59, when Amanda was only 26, and she didn’t want her kids to have that experience. And, of course, she had a husband she loved, a job she adored, and a life she really wanted to keep living.
“I had to come to terms with the fact that my condition could get far worse before it got better,” she says. “And with the fact that it could be fatal. That was hard. Really hard.”
Amanda wasn’t the only family member facing scary health challenges at that point. Her sister-in-law, Robin, had been diagnosed with stage two breast cancer in December of 2013 and, after a problematic double-mastectomy, was in the midst of a total of 12 surgeries plus chemo when Amanda went on the list. Her brother, Andrew Hite, was deeply involved in his wife’s care, and with their two daughters, then in middle and grade school.
Christina, however, was able to begin the process of testing as a donor immediately, as were Julie and Julie’s husband.
“Amanda is like the big sister I always wanted but never had,” Julie says. “I really wanted to be able to help her and I was so disappointed that I wasn’t a match.”
“She’s my sister and my best friend,” Christina adds. “I’d do anything for her.”
Testing for compatibility is an extensive, involved process, but for a long time it looked as though Christina would be a match. As the tests progressed, however, the doctors made a discovery. Amanda’s antibodies were incredibly resistant, in part because she had children from both of her marriages, which caused her body to develop twice the antibodies. Ultimately, Christina was ruled out as a donor for Amanda, though she could still participate in cross-donation, in which donors from two different friend-and-family pairs are a match for each other’s loved one. The problem was that Amanda’s incredibly strong antibodies would make finding a suitable match much more difficult.
The counterpoint to Amanda’s bad news was Robin’s good: after a final surgery and treatment in April 2015, she was all clear. She and Andrew decided it was time for him to get tested and Robin was positive it would work.
“She told everyone that she was absolutely sure he’d be a match,” laughs Amanda. “She just knew.”
Robin was right.
In July of 2015, Andrew was officially approved as Amanda’s donor. A month later, on August 21, they went in for surgery. It was a rousing success.
“Of course, it was a surgery,” Amanda says, “so we were tired and sore. “I did get a blood infection and had to be readmitted for a while, but it cleared right up. I was in a lot of pain for a while, because I had lost so much weight due to pre-surgery dietary restrictions. And, of course, I’ll take medication for the rest of my life and have to avoid foods that interact with the meds, but that’s a small price to pay.”
Andrew, too, recovered well, ditching his pain medications a few days after the procedure. As with any such surgery, he had to be extra careful for several weeks, couldn’t lift more than 10 pounds, and moved pretty slowly for a while.
“It really wasn’t that bad,” he says. “I’d never had surgery before, so I wasn’t sure how recovery would go, but it was fine. These days the donor surgery is really pretty simple. They do almost all of it laparoscopically, then just make a small incision to remove the kidney. Even a few years ago, the procedure was much more invasive and the risks were higher. Today, there’s really just no reason not to be a donor if you’re healthy. A recipient’s insurance typically covers the donor’s medical costs and I’m completely healthy with one kidney.”
“Of course I was scared when he went in,” Robin says. “It’s surgery. But I really believed it would be fine and it was. And it was completely worth it.”
It took a few weeks for Amanda to bounce back, but once the improvement started, it kept moving quickly.
“By about the second month, my energy level was so much better,” she recalls. “Plus, once I got my appetite back, I was able to have chocolate for the first time in two years, so that was great!”
“Her recovery was incredible,” Christina agrees. “It was a complete 180º. She was herself again.”
In fact, as Amanda began to improve, Patrick’s biggest problem was convincing her to rest.
“She’s so strong and so dedicated to her students,” he says. “She was barely out of the hospital before she started checking in with work and the better she felt, the more eager she was to go back. I think that passion and the goal of getting back to her kids – all of them – helped her through the recovery process.”
As both patients recouped, friends and family jumped in to help. Their father and stepmother came to stay with Amanda after surgery, her dad staying three weeks, and neighbors and co-workers brought meals and helped manage chores. A neighbor mowed Andrew’s lawn for the rest of the season, and other parents pitched in to help get young Miles to school and other activities.
“School parents I didn’t even know signed up for the food train,” Amanda says. “Some folks even started a Go Fund Me to cover the incidentals insurance doesn’t and to help with the loss of income while I wasn’t working and couldn’t give lessons. People were so incredibly generous, with their time, their money, and their thoughts.”
Amanda’s older children pitched in, too. Shortly before the surgery, daughter Megan discovered an annual PKD walk in Decatur and put together a team.
“It was so nice to talk with other people who knew about the disease and to feel like I was doing something,” Megan says. “My mom will do anything for anyone and she’s always there for everyone else. We wanted to do whatever we could to be there for her.”
The annual PKD walk raises funds for research and also works to raise awareness.
“People don’t know much about PKD,” Amanda says. “I’d never heard of it. No one I told had ever heard of it. And it’s an invisible disease, for the most part. I’m not sure people who didn’t know even realized I was sick before the surgery. I try to be as open as possible and to share as much as I can, in person and on social media. I don’t want people to feel alone and information is important.”
Typically inherited but occasionally, as in Amanda’s case, appearing at random, PKD results in numerous non-cancerous cysts forming within the kidneys. The condition affects blood pressure and blood quality, among other things, and ultimately causes decreased kidney function. Currently, there is no cure and transplant, though a wonderful treatment measure, is not a permanent fix. The kidney Andrew gave to Amanda may last her lifetime, or she may need another one in 15 to 20 years. She has a definite advantage, though; organs from living donors last nearly twice as long as those from deceased donors.
“Please, please consider donating,” says Amanda. “I’m living proof of how much it matters. If you can’t be a donor, please consider walking or doing something to contribute, even if it’s donating old clothes to the Kidney Foundation.”
“If nothing else,” Robin says, “I wish everyone would elect to donate at death. It can save so many lives.”
In fact, a single donor can save up to eight lives and can save or improve the lives of as many as 50 people by donating tissues and eyes. Given that an average of 18 people who need transplants die each day in the U.S. and a new name is added to the lists roughly every 10 minutes, that number is significant.
“I was actually really lucky,” Amanda says. “I never had to do dialysis and I found my donor in 18 months. Some people wait for five or ten years to find a match. Some people never do. I also know my donor. I can thank him every time I see him. And I do.”
Today, Amanda is back to normal life and thrilled about it. Her maintenance medication requirements have dropped from 40 pills a day to 16 and she can go to the pool and run errands with Miles without missing a beat.
“Sometimes I look at her and think ‘Wow. My wife went through a kidney transplant,’” Patrick says. “If you didn’t know, you’d never suspect.”
For her part, Amanda works at staying healthy and taking care of herself so that her donated kidney will last as long as possible and she does all she can to educate people about PKD and about organ donation.
“My brother is my hero,” she says. “He literally saved my life. I’m happy, I’m healthy, and I’m here – all because he said ‘yes.’”
WHAT CAN I DONATE?
According to organdonor.gov, more than 120,000 people are on organ transplant lists nationwide at any time. In 2015, almost 6,000 transplants were made possible by living donors. The vast majority are kidney transplants, but doctors can, in some cases, also transplant a segment of liver, lung, intestine, or pancreas.
Individuals also have a surprising number of options for donating upon death – and can save or dramatically improve an incredible number of lives by choosing to do so. Deceased donations include the kidneys, heart, lungs, liver, pancreas, and intestines as well as tissues such as the corneas, middle ear, skin, heart valves, bone, veins, cartilage, tendons, and ligaments.