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‘We made it’

Wye Mountain woman gives kidney to friend

By Tammy Keith

This article was published November 22, 2012 at 12:00 a.m.

amy-gray-light-left-who-has-a-rare-disease-called-von-hippel-lindau-and-cathy-may-became-close-friends-through-a-neighborhood-social-group-they-call-women-of-wye-or-wow-after-may-donated-a-kidney-to-light-in-august-light-said-the-two-are-more-like-sisters-weve-always-been-feeling-like-weve-got-each-others-backs-because-of-everything-weve-gone-through-but-theres-a-deeper-communication-there-light-said

Amy Gray Light, left, who has a rare disease called von Hippel-Lindau, and Cathy May became close friends through a neighborhood social group they call Women of Wye, or WOW. After May donated a kidney to Light in August, Light said the two are more like sisters. “We’ve always been feeling like we’ve got each other’s backs because of everything we’ve gone through, but there’s a deeper communication there,” Light said.

— Amy Gray Light and Cathy May, both 54, have shared a love of red wine, a passion for animals and, now, a kidney.

“If it weren’t for Cathy, I would not be here today,” Light said. “What do you say to someone who gives you life?”

Light laughed, because the whole story is almost too terrible, and too good, to be true.

They met 12 years ago in a fun-loving group of friends who live on the mountain in Bigelow and call themselves the Women of Wye, or WOW.

“We’ve all been together through thick and thin,” May said.

May found out that Light has a rare disease, von Hippel-Lindau, or VHL, that causes cancerous tumors to pop up everywhere in her body, including her brain and her kidneys. Light has half a pancreas and was down to a remnant of one kidney.

About five years ago, Light told her WOW friends she needed a kidney transplant to live.

“I can’t live without a kidney, and the other kidney had cancer on it, so it was only a matter of time,” Light said.

May knew, just knew in her soul, that she was supposed to give her friend a kidney and that it would be a match.

“She’s an amazing person anyway,” Light said. “She’s one of the most generous, sweetest, kindest people I’ve ever met, and she’s also very smart. She went home before she offered and did a whole lot of research. I call her the research queen. She contacted people who had been donors. She had all her ducks in a row before she came to me about it.”

“I’m a person of my word,” May said. “I didn’t want to look into the research and say, ‘Oh, my God, what am I doing?’

“Deep in my heart, once I made the decision, never did I once even have a qualm about doing this. I always felt like it was going to work out,” she said.

When a test came back that ruled out May as a match, she refused to believe it and asked to be retested. The second time, the results were fine.

It was like the doctor Light saw in the beginning, when she was a 23-year-old former model who had just landed her dream writing job in Washington, D.C., for an American Institutes of Architects publication.

She tried to convince a doctor that her symptoms meant she had a brain tumor. He made her a bargain that he’d give her a CAT scan if she’d see a psychiatrist.

The psychiatrist thought she was perfectly sane, but asked Light, “Are you aware you’re walking sideways?”

That afternoon, Light turned on the television at home, which she rarely did during the day, and she vividly remembers that the movie playing was Dark Victory with Bette Davis — about a woman with a brain tumor. She packed a bag, called work, put on her jogging clothes and called a taxi to go to the emergency room.

The driver asked if she was going jogging in the park.

“I said, ‘No, I have a brain tumor.’”

Finally, she was correctly diagnosed with VHL, and her life has not been normal since. She’s had 16 surgeries, including three brain surgeries and six kidney surgeries, plus the transplant Aug. 16 at Emory Hospital in Atlanta, when a doctor took out May’s kidney and walked it across the hall to place in her friend.

Light’s body was beaten down by this point.

She’d undergone another surgery on Aug. 7 to take out the piece of her old, cancerous kidney.

“To tell you the truth, that was the one I was scared about,” Light said. “My surgeon … had always warned me it was going to be a very difficult surgery and didn’t want to do it because things could go wrong. There are lots of organs to work around, and they didn’t know the level of the cancer. He said getting that kidney out was like chipping concrete because there was so much scar tissue.”

To access it, the surgeon made an 18-inch incision.

“I did not expect to see that. I call myself the Bride of Frankenstein.”

Light had to have dialysis when she had no kidneys.

“It was a horrible experience,” she said.

“The nurses called me Sleeping Beauty because they never saw me awake.”

Then came the transplant. She had full confidence in her transplant surgeon, Dr. Alan Kirk.

Light was in her hospital bed and heard Cathy before she saw her.

“I heard her laughing. I said, ‘Oh, Cathy’s here.’ She’s a person who wears her heart on her sleeve. She’d be laughing; then she’d be crying,” Light said. “Besides that, she’s my hero; she’s selfless.

“I wouldn’t have blamed her a bit for saying, ‘I just can’t do this,’” Light said.

Light immediately felt different after surgery.

“When I woke up with the transplanted kidney and looked down and saw my ankles weren’t swollen anymore, people would say, ‘How are you?’ I’d say, ‘It’s golden, it’s working like a champ,’” Light recalled. “This kidney is great and has been wonderful.”

The first time the friends saw each other after surgery, they hugged and cried, “and I think I said something like, ‘We did it,’ or ‘We made it,’” Light said.

Both women recuperated at Mason House, a place they both can’t praise enough, created just for organ donors and recipients. Light had her husband, Excy, who is her support system.

“There’s no way it could have been done without his support and love and just being there,” Light said.

May was accompanied by her 32-year-old daughter, Jessica Kirkpatrick of Little Rock.

Light was in the hospital three weeks and at Mason House for a month.

May was in the hospital for four days and at Mason House for two weeks.

May and her husband, Bob, who is on the writing faculty at the University of Central Arkansas, have miniature donkeys and horses, cats and dogs.

A foal was born the day of the transplant, and May said they named him Mason.

“People at the Mason House were naming their organs stupid things, I thought — Leroy and Junior. I wanted to honor Cathy’s gift to me; this gift of life, this generous act. I call mine Golden Champ,” Light said.

Light hasn’t quite ridden off into the sunset, yet.

“It’s been hell,” she said. Hers was not a typical transplant because she had to have the diseased remnant removed first.

“My body’s embattled anyway. I had two major surgeries, one on top of each other. I have to tell you, I felt like I almost punched my ticket with this one,” Light said.

“There were days and days and days I had to just force myself to walk down the hall and back, and I was miserable. That’s how little energy I had.”

Light and her husband run a wild-mustang sanctuary on Wye Mountain.

“I can walk across the street to see the horses, but by the time I get back, I’m shaking,” she said.

The transplant threw her into diabetes, and she gives herself injections several times a day.

The anti-rejection medications have made her sick, but she’s being weaned off traditional ones and is trying a new one that is FDA-approved and kinder on the bones. She and her husband make trips to Emory for infusions, but she’s hoping to get them done in Arkansas in the future.

VHL tumors can’t grow on a donor kidney.

“That’s huge,” Light said.

May was healthy before the surgery and bounced back quickly.

“I feel fabulous, absolutely fabulous,” she said. “I still have to be careful. It’s gotten me out of loading hay up into the loft.”

Her pain primarily was from the gas filling her abdomen during the surgery.

“I don’t talk about it a whole lot, but when I do talk about it, it’s because I want people to get educated and let people know this is an option,” May said of organ donation.

“Your chances are not as good that your kidney is going to function as well if you get a cadaver. A living donor is better for a recipient,” May said. “There are people out there willing to donate to a total stranger.”

Light said she and May both hope people will educate themselves on organ donations.

“I think both of us feel that if anybody reading this article would do their research and understand it more, there would be more [donations],” Light said. “A lot of people are needlessly dying. There are people who do have problems [with a transplant], but that’s not the norm.

“I think I’m about to round the corner,” Light said.

She wrote an essay about living with VHL, which was published in October in the book Chicken Soup for the Soul — The Power of Positive. In it, she said VHL had not defined her life, it had “refined it.”

A spinal surgery in 1997 forced her to retire as public relations officer and editor of publications for Winrock International.

“It’s been 30 years,” she said. “It gets to you — I can’t lie about that,” she said. “On the other hand, I don’t want to live in a dark hole, so I try to focus on the good things, the things in life you can do.

“Even though I still have cysts and tumors on the spine and cerebellum, as long as they stay small and behave themselves, I can have my kind of a normal life. What’s normal anyway?”

May said she’d donate her kidney to Light again without hesitation.

“I’ve always been a happy person, but ever since then, knowing she’s on the mend, I’m filled with a sense of joy, and I’m very humbled that I could do what I did,” May said. “People say, ‘You’re an angel’ or ‘a hero,’ and that embarrasses me, because I don’t look at myself that way, and that’s certainly not why I did what I did. I appreciate that they think that, but it’s my greatest honor. It’s been pretty amazing. The other day I just happened to think about it, and it was like, wow, it’s almost like it was a dream.”

Light said she and May have shared deep conversations about life, and going on this journey has changed their friendship.

“Now, I feel like she’s a sister to me for sure,” Light said. “I laughed, because I said something to her like, ‘Gosh, your kidney is golden,’ and she said, “It’s not my kidney!” We banter back and forth a lot. We get together and just laugh. There’s a bond there that’s unbreakable.”

Senior writer Tammy Keith can be reached at (501) 327-0370 or tkeith@arkansasonline.com.

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