Kidney transplant waits on friendship

[okarol]

Thursday, October 18, 2007

Kidney transplant waits on friendship

By SAM MILLER
The Orange County Register


There she is, needing the biggest favor of her life, and Kim Oyos has a problem.

She doesn’t ask for favors.

She’d much rather do a favor. She has volunteered at a children’s hospital and for the Anti-Defamation League. She gone through the orientation to be a court advocate for foster children.

Ask somebody for something, she figures, and you lay the burden on them. Or, worse, you put them in the uncomfortable position of turning you down.

“That’s not for me,” she says. “I’m the strong one. It’s weird – I’d rather give a kidney than receive one.”

But that won’t work. Because Kim, 45, is the one who needs one. And if she won’t ask her friends or family members to go under the knife for her, what else can she do?


Kim is a single mom living in Irvine when everything changes.

She has a condition called vesicoureteral reflux, which causes urine to flow back from the bladder and, sometimes, up into the kidneys. This can expose her kidneys to infection, which can lead to failure, which must be treated with dialysis.

In February 2005, all that happens.

Dialysis leaves her exhausted, but unable to sleep more than two hours a night. It means she can consume only two cups of fluid a day, so she chews on ice and agonizes.

A legal assistant – she must quit. A marathon runner – she must quit. She and two teenage daughters leave Irvine and move in with her mother in La Palma.

This is no life, she says, just a series of surgeries. Twenty so far, with countless more to come.

A new kidney, meanwhile, could fix it all, she says. It is the difference between a normal life, and this impossible daily slog.

And yet – she’s Kim. She doesn’t ask for help. Until…

“I reached the end. I couldn’t hold on anymore. I’m tired of being sick and in pain.”

So she goes to the Internet, where nobody knows her. At a site called matchingdonors.com, where willing donors offer organs to strangers, she creates a profile for $599.

“It was safe,” she says. “I thought there was more of a chance that I wouldn’t get a response.”

That’s right: It was safe because she figured she wouldn’t get a response.

Go back 40 years.

Mary Trahanleger is a 26-year-old mother in Hayes, La., population 400.

Her son Joey crawls up onto the bathroom counter and paws through the medicine cabinet. He finds the painkillers Mary takes for migraine headaches. He thinks the pills are candy.

It’s a time-release medication, and by the time Joey starts feeling sick, it’s too late. The 3-year-old falls into a coma. His kidney fails, and his brain goes dead. Still, for a week, the hospital keeps Joey alive.

Mary eventually finds out why. Another family with a sick son needs a heart, and Joey’s may be able to save his life.

How callous, Mary thought. I just lost my son, and they want to cut out his heart!

It didn’t seem right – didn’t seem Catholic. No, she tells the doctors. You can’t do it.

“I still wonder about that child,” she says now. She’s 64, a retired corporate manager who now drives a special education school bus in Illinois.

“At that point, I vowed to be extremely caring.”

In 1995, she offered a lung to a sick cousin, but it was too late. She offered a kidney to her ailing mother-in-law, but there was no match. About a year ago, a friend told her about matchingdonors.com.


Before any living-donor transplant at any transplant center, the medical staff will do psychological evaluations of the donor and recipient. They’re trying to gauge motives – selling an organ is illegal – and they want to be sure the donor understands the risks involved. Risks like, well, death.

The nurse at UCLA Medical Center asks Mary how she knows Kim, and Mary tells her the truth.

They’re told UCLA doesn’t do stranger-to-stranger organ donations. The transplant is off.

UCLA isn’t alone.

“Ten or 15 years ago, very few transplant centers would have accepted somebody who had no previous relationship,” said Joel Newman, a spokesman for the United Network for Organ Sharing, which represents most of the nation’s 247 kidney transplant centers.

At the time, it was thought that donors and recipients must share very similar immune systems for the transplant to succeed, so nearly all transplants involved relatives.

As doctors learned that the matches didn’t have to be so close, however, transplants from co-workers, high school pals or fellow churchgoers became common.

Three years ago, matchingdonors.com arranged its first match, at a Denver hospital. Centers are increasingly willing to perform such transplants, as experiences have yielded mostly positive results.

Still, Newman said, some transplant centers are still hesitant.

UCI Medical Center physicians look at each case individually, but aren’t currently performing transplants from anonymous donors, said spokeswoman Susan Mancia.

UCLA generally prohibits stranger-to-stranger donations, said Tom Rosenthal, chief medical officer at UCLA. He spoke only generally about the hospital’s policy, not Kim’s case.

“All the people in my team want nothing more than to transplant as many people as we can, safely. That’s our underlying goal,” he said.

But “there is a spectrum of this where the protection of the donor is at least equal to our enthusiasm to transplant. … The concern our program has had is, it’s way more difficult to evaluate motivations. Is this truly altruistic? Are there coercive aspects, or financial drivers for the gift?”

Indeed, some patients on matchingdonors.com offered to buy Mary’s kidney, she says. And Kim was offered “charitable” cash gifts, which she suspects were scams to get her bank account numbers.


Once again, then, Kim has a problem. She is devastated. She says, “I had just given up on my hope and my future.”

But, it turns out, not entirely.

The nurse at UCLA tells them if they were to become friends, maybe then they’d qualify. Give it six months, she says.

A great-grandmother who listens to classical music and prays daily. A hard rock fanatic who says the past two years have made her numb to everybody and doubtful about God. Fast friends?

Ten days later, Mary gets on a flight to Los Angeles to find out.




To be continued...

Tomorrow, we learn if women from different worlds can become friends.

Contact the writer: (714) 796-7884 or sammiller@ocregister.com

http://www.ocregister.com/life/transplant-says-mary-1898207-kim-kidney

PHOTOS:
1. NEW FRIENDS: A greeting at LAX.
2. Kim and Mary

[MyssAnne]

I wanna finish this. I so hope it turns out well. I'm glad pictures were posted, they look so happy to see each other!!

[goofynina]

Ohh, Please keep us updated on this story, i hope it works out for her 

[donnia]

Ohhh... I cant wait to read the rest of it!  Loved the pictures... made it much more personal.

[paris]

Great story and loved seeing their smiling faces.  Can't wait to hear more!

[okarol]

Thursday, October 18, 2007

PART 2: Kidney transplant waits on friendship

By SAM MILLER
The Orange County Register

Kim Oyos needs a kidney. Mary Trahanleger has one to give.

But first, the two women – strangers who met on the Internet – must bridge 2,000 miles of geography and a striking generation gap and become friends. Doctor’s orders, so to speak.

So it is that Kim, an Anaheim mother whose kidneys failed two years ago, finds herself staring up toward an escalator at LAX. The flight from Chicago is 20 minutes late, no small thing after 10 days spent waiting for Mary to make it from her Illinois home to California.

Finally, she sees Mary, whom she recognizes by photos. Mary’s hair is now buzzed close to her scalp – a show of solidarity to a friend in Illinois with cancer. Mary sees Kim, and anxiously tries to descend the crowded escalator.

She slips past the man in front of her, and hurries to the sturdy ground. Face to face for the first time, Kim and Mary hug, and weep.

If they become friends over the next few months, UCLA might be willing to perform the transplant. If not, the hospital’s general policy is to not perform stranger-to-stranger donations.

Which means the next two days could be the most important of Kim’s life.


Dinner is Italian food in Garden Grove. The women sit directly across from each other, and Kim’s youngest daughter, Andrea, sits beside Mary.

The 16-year-old asks Mary, Why?

Mary tells the story of her son, who died decades ago at age 3, and whose heart Mary wouldn’t allow to be transplanted into another child. She tells Andrea she feels guilty.

“She knew this is her job in life, to help somebody have a better life,” Kim says.

That night, they eat veal Parmesan, manicotti, and shrimp – family style. And Kim and Mary both start thinking, something is actually happening here. This feels like family.

When they get to Kim’s apartment, for instance, they don’t go to bed, even though it’s midnight in Chicago time. They go to the living room and stay up four more hours talking – about Kim’s long ago divorce, about Mary’s children, about riding bikes (Mary can’t) and operating an air brake bus (Mary can).

Kim starts calling her “Mary Mom,” and Mary says that “even if I’m not a match, we both have new families.”

Kim’s boyfriend, Dean, who encouraged her to seek a donor online in the first place, goes home. Later still, Kim’s older daughter, 20-year-old Jennifer, goes home, too.

Finally, 2 a.m., they all go to bed. When Mary is out of sight, Kim and Andrea pinch each other.

“I just cried,” Kim says. “You know, I had kind of lived by having no expectations, no disappointments. After 17 surgeries, going on 18 and 19, you lose that ability to hope. You get tired. You get tired of holding on. She gave me that strength back.”

At 4:30 a.m., Kim – whose illness gives her terrible insomnia – wakes up. Mary is already awake and hears the stirring. Until the rest of the household wakes up, they talk on and on.


So how do two adult strangers willfully become friends?

It’s actually a lot like middle school. They had the slumber party Friday, and stayed up nearly all night. Saturday afternoon, they go to a pizza buffet and stuff themselves. Saturday night, they go bowling.

They’ve spent 24 hours together, and two digital cameras are almost full, scores of shots that are nearly all the same: Kim and Mary, side-by-side, smiling broadly. Or Kim and Mary and Kim’s sister, or Kim and Mary and Kim’s daughter, or Kim and Mary and Kim’s daughter’s boyfriend.

“We’re so similar,” Kim insists as they wait for a lane. They both like purple, she says, as she and Mary reach across the table to squeeze each other’s hands.

They both like Italian food – another hand squeeze. Ummm… road trips, they like road trips.

But wait a minute. That’s only a few things. In fact, they’re almost nothing alike.

Not their clothes – a small polka-dot top and flip flops for Kim; a black cardigan and sturdy black shoes for Mary.

Not their faiths. Mary is a devout Christian, has been since she was baptized as a child. Kim had pretty much given up on God until she met Mary.

Mary is into classical music. Kim is obsessed with the hard rock band Led Zeppelin.

“Lez Jeppelin,” Mary says. “Is he the guy who lost the son?”

Later that evening, Kim explains.

“What I’m talking about is more from the heart, not the materialistic things. We’re the same in what we believe in. We both love to give. We don’t take. Except …”

She points at her kidney.

It turns out that all of this – the pizza, the bowling, the slumber party – might have been unnecessary.

Kim calls matchingdonors.com, the Web site that matchmade Kim and Mary. She tells them UCLA won’t do the transplant if there isn’t a relationship in place.

Oh, don’t worry about that, they tell her. Just go to Cedars-Sinai Medical Center, which does do stranger-to-stranger donations. Easy as that.

So Kim begins transferring her paperwork. If Cedars-Sinai accepts them, they’ll find out if Mary is a match. If she is, Kim could have Mary’s kidney in the next few months. All this relationship stuff will have been a waste of time, right?

That’s not how they see it.

“I’ve got a new mom,” Kim says. “My kids have a new grandmother.”

That’s something she says she needed.

“I’d been numb. I built a wall around me. I wouldn’t let anybody in. I’m starting to put my faith back in God. Since that happened, everything in my life has been like, ‘I’m so lucky.’

“You know how they always say, ‘there is a reason for everything’? Well, without going too far, and whether there’s going to be a match or not, there’s a reason we’re together. There’s a reason she’s in my life.”


Sunday morning they return to the airport. Mary jokes that she should adopt the whole family. Andrea cries, and the Oyos family makes plans to visit Illinois.

Five days later, Kim is scheduled for yet another surgery. She doesn’t know it, but in the weeks that follow she’ll be sick again and have to undergo her 20th surgery since 2005. She’ll spend a number of nights in a hospital. The trip to Illinois is on hold.

No matter how many hospitals she goes to, she might never find a kidney that her body accepts. She might be stuck with this pain for life.

But as she sends Mary off, the new friends are optimistic.

Their final words to each other: “I love you.”

http://www.ocregister.com/ocregister/life/themorningread/article_1899263.php#

PHOTOS:
1. TRANSPLANT: Foreground, Kim Oyos of Anaheim with her daughters (left to right) Andrea 16, ,and Jennifer20. KimOyos was offered a kidney by Mary Trahanleger of Chicago. The two found each other on an internet site that puts together strangers to need kidneys with potential donors.

2. Kim and Mary

[MyssAnne]

Oh my.  I am smiling after reading that. That just gives me hope, all over again.

[goofynina]

I just dont understand, why do they have to prove they are friends or there is a relationship there before they can do the surgery, the lady needs a frikkin kidney and she found someone willing to give her one, WHAT'S THE BIG FRIKKIN DEAL?? Well, i know she still has to be tested to be a match but lets say she is a match,  what then?     I hope everything works out for them, this story kind of reminded me of when i was in Vegas and met my IHD family, the love i felt from them i knew, this is the real deal 

[angela515]

Yah, I never did agree with that. You have to actually "know", like be friends or something, with the person wanting to donate, alot of places do not want it to be a stranger... it's like, give it a damn rest already, stop holding someone back from donating and stop denying someone the gift of life.

[okarol]

Jenna's first transplant team said "absolutely not" to the idea of stranger-to-stranger donation. The 2nd hospital, Scripps, was more flexible saying "as long as there is no payment, coercion or valuable consideration, and the donor passes the medical and psychological evaluations" it was ok!