Archive for July, 2009

Co-workers share stronger bond after kidney donation

Monday, July 27th, 2009

By Shelia M. Poole

The Atlanta Journal-Constitution

Longtime co-workers Ceri McCarron and Betty Egwenike have shared stories about raising children, caring for ailing parents and their travels.

Now, they share an even stronger bond. McCarron recently donated a kidney to Egwenike, who was diagnosed with kidney disease several years ago and was on dialysis three days a week.

What makes their story even more compelling is that although the women worked together for more than 20 years and considered themselves workplace friends, they remained relative strangers outside the job.

“I think the conversations we’ve had in the last couple of weeks have been on a much deeper level,” said McCarron, 44, who lives in East Atlanta with her husband, two children and a menagerie of pets. “I never even had her phone number until I got it at the hospital.”

McCarron and Egwenike, 52, are now both home recuperating. The two, who work in the archives department of the Jimmy Carter Presidential Library & Museum, were part of a living donation, which takes place when a living person donates an organ, or part of one. Usually, the donor is an immediate family member, such as a sibling, a child or a parent. But sometimes the donor can be a friend, co-worker or a more distant relative, according to the American Kidney Foundation.

In 2008, 5,967 of the 16,517 kidney transplants came from living donors.

More than 102,000 people in the U.S. are waiting for an organ transplant, according to the Virginia-based United Network for Organ Sharing. About three-fourths of people on the list are waiting for a kidney transplant.

Egwenike said several members of her family have high blood pressure or heart disease, so more than likely, she thought her donor would be a total stranger. Dr. Miguel Tan, who performed the surgery on McCarron at Piedmont Hospital, said the wait times are generally shorter for organs for living donors. There’s also less trauma to the organ, the outcomes are better and evaluations are done on living patients, so their health profiles are well-known.

But one day the two were talking about the transplant and hit on the subject of blood type. It turned out both shared the same blood type — O negative — and a seed was planted.

“She initiated it,” Egwenike said. The disease produces cysts in the kidneys and eventually causes the organs to deteriorate and stop functioning. By the time she was diagnosed, Egwenike said 55 percent of her kidney function was gone. “I was surprised she was actually going to do it. I was skeptical because you can change your mind at any time. I kind of stayed in the background because I didn’t want to be harassing her. I didn’t ask, it was out of her heart.”

It also surprised James A. Yancey Jr., an archivist at the Carter Library, who supervises both women.

“I am awed by this whole process,” he said. “I’m surprised anyone would do this. They’re not kin. They were friendly because they worked together, but they didn’t party together. I don’t think there was an association after work. She (McCarron) put into practice what a lot of people talk about and that’s love.”

As far as McCarron is concerned, it was the right thing to do. “I just knew … I’d seen her struggle with her health for a while and she always did it with such dignity,” she said. “I could tell she was doing what she needed to do to take care of herself, work, raise a daughter and a marriage.”

McCarron spent hours researching the process and went through several tests to determine if she was a match and if her kidneys were healthy. At first her husband, worried about the longtime implications on her health, wasn’t too keen on the idea, but he later came around.

“We both agreed that if something were to happen to Miss Betty, how could we live with ourselves knowing we have helped,” McCarron said.

Egwenike is thankful for the gift. She said she feels much better and has no doubt McCarron took good care of her kidneys.

“Yeah,” she said, laughing. “She drank a lot of water.”

Egwenike said her husband’s friends would like to have a mass in McCarron’s honor. “It was just a beautiful gift,” she said. “She’s an angel.”

“I don’t think it will be the way it was pre-surgery,” McCarron said of her friendship with Egwenike. “Where it leads, I don’t know. I’ll just let it unfold.”

A perfect match

Monday, July 27th, 2009

By Vikki Hopes – Abbotsford News

Published: July 27, 2009 4:00 PM
Updated: July 27, 2009 4:09 PM

Sid Bos needed a kidney, but chances were that he was going to die waiting.

His blood type was O negative and, with only seven per cent of the population having the same type, finding a match wasn’t going to be easy. There were no family members who could help.

But Sid didn’t count on the selflessness of his friend Venessa or on the hands of fate.

The first thing Sid noticed was the fatigue. He had never felt so tired. He was a building contractor, and he had always been brimming with energy. But now by 10 a.m., whenever he was behind the wheel of his vehicle, he felt like he was going to fall asleep.

Sid consulted with his doctor, and the only other symptom he had was a spike in his blood pressure.

His health continued to decline and by 1998, at the age of 49, there was a diagnosis – a rare kidney disorder called focal segmental glomerulonephritis, which affects only about seven people per million.

In short, it meant that Sid’s kidneys were failing. His doctor estimated he would require dialysis within a year. It took only six months.

Sid first met Venessa in 1997. She attended a dental assistant program with a woman who rented a room in Sid’s house. They – along with others in the class – often studied together in Sid’s home.

Sid, single at the time, saw himself as “the old guy in the house,” but a bond developed between him and Venessa. He liked her quiet, studious nature, and they discovered they had common interests.

Sid’s tenant moved out, and Venessa continued to come over and visit. The pair watched hockey together or worked on Sid’s garden.

When Sid was first diagnosed, he did not share the news with any family or friends, not even Venessa. She did not have an inkling of his health issues until he told her he required dialysis.

Through this, their conversations became more personal, and their relationship deepened. Venessa, 20, and Sid, 50, fell in love.

Sid tried not to let his condition slow him down. He was on a form of dialysis, called “peritoneal,” that enabled him to perform the procedure at home or on the road. He was an avid golfer, and he even carted all his equipment along during golf trips with his buddies.

But he was getting sicker, and Venessa could see the toll it was taking. Sid was on the waiting list for a kidney, but it could be years before his name moved to the top and a matching donor was found.

Venessa told her dad that she was going to get her blood tested to see if she had the same type as Sid.

She showed up at Sid’s house shortly afterwards.

“I had my blood tested and I’m O negative,” she told him.

Venessa then announced that she wanted to donate a kidney to Sid.

“You sure you want to do this? You really have to think about this hard,” he said.

Venessa was certain.

The pair then informed the BC Transplant Society, and about six months of medical tests followed to ensure they were a suitable match.

Doctors were astounded at the results. On the tissue matching, they met four out of the five criteria – rare to find even among blood relatives. Overall, the pair were found to be a 97 per cent genetic match – so close that one doctor warned them against having children together.

The transplant took place on May 3, 2000. The only complication was that once the transplant was completed, doctors had to perform a second surgery on Sid due to problems with urine drainage.

When he awoke from the anesthetic, he felt like a million bucks. The first thing he wanted was a peanut butter sandwich.

Four hours later, he hobbled down two corridors in the hospital to visit Venessa, who was taking longer to recover.

Sid was released from hospital within three days; Venessa within five. Sid was back golfing six weeks after his surgery, around the same time that Venessa returned to her dental assistant job.

Neither one has had any complications in the nine years since the procedure. Sid later discovered that an aunt had the same rare kidney condition. She had a transplant and died 19 years later at the age of 89.

Sid and Venessa were married on Sept. 1, 2004 in Invermere. They went through genetic testing to see if having children was advisable.

Their son, Linden, was born on July 2, 2006 — a little brother for Sid’s 33-year-old daughter from a previous marriage.

Sid is grateful to have the experience of raising another child. If it wasn’t for Venessa, he might never have seen that day.

“The most important day of my life was when I met this lady,” he says.

Abbotsford is one of 14 communities around B.C. taking part in the Kidney Foundation’s second annual Give the Gift of Life Walk on Sunday, Aug. 9.

The walk begins at 11 a.m. at Gardner Park on Livingston Road.

Participants walk to raise funds for research, patient programs and services, and organ donation awareness.

“It’s so important for us to raise awareness of the need for kidney health in addition to raising funds that support the work of the foundation, and walks like this one fulfill both objectives perfectly,” said Pia Schindler, the Kidney Foundation’s director of development.

For more information or to register, visit kidney.bc.ca/walk or call Lois Wilson at 604-856-8218 or Riley Weiss at 604- 854-3401.

Waco woman gets new kidney thanks to daughter’s participation in triple organ swap

Monday, July 27th, 2009

www.wacotribcars.com
By Cindy V. Culp Tribune-Herald staff writer

Monday, July 27, 2009

When Mitzi Crum’s mother needed a new kidney, Crum was more than eager to give one to her. Problem was, she wasn’t a good match.

In years past, Crum’s mother, Wanda Irwin, of Waco, would have been flat out of luck. She didn’t have any other loved ones who could donate, and she was too old to get a spot on the national kidney waiting list.

But thanks to a relatively new concept in organ donation, Irwin was able to get a new kidney six weeks ago. Called paired donation, it works like this: The loved one of a person needing a kidney agrees to donate to a stranger, in exchange for someone close to that person donating a kidney back to the person in need.

In this case, it was actually a triple organ swap. The kidney Crum donated went to a 43-year-old woman. A loved one of that woman gave a kidney to a third patient, who in turn provided a kidney for Irwin through a loved one. In sum, six people participated — three as donors and three as recipients.

“At first, when I heard about (donor swapping), I wasn’t open to the idea,” said Crum, 44, a teacher at Hallsburg Elementary School. “It wasn’t what I had been planning. But after I thought about it, I realized it doesn’t matter how she gets it, as long as she gets it.”

Irwin, who is 80, said she is grateful the swap method is now available. She had her first kidney transplant in 1999, after arthritis medication damaged the organ. That kidney came from a deceased person through the national list maintained by the United Network for Organ Sharing.

The transplant lasted nearly a decade. But by February of last year, the kidney had deteriorated to the point where Irwin needed dialysis three times per week. Because of her age, she was not eligible to get back on the national list, she said, making a live donor her only option.

Initial testing indicated Crum was a match, and the two women scheduled a November surgery date. But a few days before the surgery was to take place, further tests revealed an antibody mismatch that would have caused Irwin’s body to reject her daughter’s kidney, they said.

Luckily, the two women said, the surgeon who was supposed to perform the transplant told them about paired donation. Once they agreed to the idea, information about them was entered into a database that contains information about other mismatched donor-recipient pairs.

A computer eventually used that data to figure out the three-way swap. Irwin said she is the oldest person to have participated in an organ swap performed at the Texas Transplant Institute, which is part of the Methodist Healthcare system in San Antonio. In all, the hospital has facilitated eight double kidney swaps and four other triple exchanges, she said.

Crum did not incur any costs as a donor, she said. As is typical for kidney swaps, all costs were paid by the recipient’s insurance company, she said.

“I was in a lot of pain for a couple days, but I’d do it again in a heartbeat,” Crum said. “It was so worth it.”

A group called the Alliance for Paired Donation maintains a national database of mismatched pairs who want to participate in a swap. The group works with 73 transplant centers in 25 states, according to its Web site. The closest one is Scott & White Hospital in Temple.

The San Antonio hospital is not a member of the alliance, however. It instead has its own database, which includes people from several states. Some other hospitals nationwide use similar regional databases.

Irwin and Crum said they are now on a mission to spread the word about organ swapping. Irwin’s transplant should last at least 10 years, she said, giving her a chance to see her four grandchildren grow up.

“If it can help even one family, that’s what it’s all about,” Irwin said.

Michelle Segovia, a spokeswoman for the Texas Organ Sharing Alliance, which facilitates traditional organ donation in McLennan County, said the concept of organ swapping is a great one. Not only does it help people with a willing loved one get a transplant sooner, she said, but it also helps those without such a loved one by lessening the number of people on the national waiting list.

About 102,000 people in the U.S. are on the waiting list for organs, Segovia said. About 80,000 of them need a kidney, with the average wait being four to six years, she said.

“We think it’s great,” Segovia said of organ swapping. “It’s people helping each other.”

cculp@wacotrib.com

Woman’s illness spawns donation

Sunday, July 26th, 2009

The Anapolis
By SHANTEE WOODARDS, Staff Writer
Published 07/20/09

Laurie Sears Deppa had every intention of undergoing surgery to help an Edgewater woman in poor health.

Laurie Sears Deppa, who lives in Annapolis, decided to become part of Johns Hopkins Hospital’s paired kidney exchange program, which links previously incompatible donors to patients in need.

But after months of testing, the she learned that her kidney would not be a match for Jenny Cisneros, the 24-year-old whose health troubles have been documented in The Capital.

So Deppa, who lives in Annapolis, decided to become part of Johns Hopkins Hospital’s paired kidney exchange program, which links previously incompatible donors to patients in need.

Deppa had surgery last month, and one of her kidneys was donated to a West Virginia woman she’d never met. Deppa is still recovering from the procedure, but is pleased she made a difference for someone, if not for Cisneros.

Once she has fully healed, she plans to pick up her regular exercise regimen and eventually announce her plans to run for mayor of Annapolis.

“I thought I’d have a good kidney. I don’t drink or smoke and I’m pretty healthy,” Deppa said. “Some people think I’m crazy … (but) I just thought I’d help somebody, and what’s more important than giving the gift of someone’s life?”

Nationally, there are more than 300,000 people on the waiting list for a kidney transplant, according to the U.S. Department of Health and Human Services. In Maryland, 9,209 people are on the list, including 259 who have been added this year.

There are nearly 210,000 kidney donors available nationwide through the Organ Procurement and Transplantation Network, and that total includes about 4,300 in Maryland.

Cisneros is still awaiting a kidney, despite coming close to receiving a transplant at least three times before. Last year, a donor was found, but became ill and the transplant was later ruled out. This time, at least two candidates – including Deppa – went through a series of tests only to be ruled out as donors in the end. Her antibodies have been the problem, and now she’s in Minnesota to see if doctors at the Mayo Clinic can help.

“I was so frustrated because all these people called in to get tested and none of them were a match,” said Cisneros, 24. “‘I was like, ‘what’s the problem?’ and they said ‘it’s your antibodies.’ So I Googled how to get rid of them and the Mayo Clinic came up.”

Cisneros’ troubles with her kidneys began in 2003, when she thought she had a touch of the flu. But her doctor ordered a full round of tests and she was eventually diagnosed with Goodpasture’s syndrome, a disorder that weakens the kidneys and lungs. She was told that the disease would run its course through her body and not return.

After a treatment course of chemotherapy and steroids, Cisneros received her mother’s kidney. But that too began to fail, and she also developed congestive heart failure and hypertension.

The Capital published a story about her health challenges in January. At that time, she was fully dependent on dialysis treatment, which is still the case.

“She’ll act like everything is OK, like everything is fine and dandy, but it’s really not,” said Michelle Collett, a friend. “She’s such a tiny little thing, and she’d like everyone to think that she’s the strongest thing out there, but this has got to take a toll on the body. I don’t know how many more years she can handle it.”

Her friends set up a Web site, www.savejenny.com, and used billboards in the area to encourage people to get tested.

Potential donors get a blood test and urine test. If both are matches for someone who needs a kidney, they move on to a CT scan.

Deppa completed her rounds of testing, which included an X-ray, CT scan and blood work, in addition to the initial tests. She took a trip to Europe and believed she’d come back in time for Cisneros’ transplant surgery. Instead, she learned that the donation couldn’t move forward because there was a concern about Cisneros’ antibodies.

But the experience has helped turn Deppa into an advocate for organ donation.

“The sad truth is that there are a lot of people out there who believe that if they become a donor … medical personnel do not do everything they can to save their life; they’d rather harvest the kidney. We know that’s ludicrous, Deppa said. “Maybe this will have good karma. I helped one person and maybe, in response, others will do the same.”

For more information, visit www.savejenny.com. To be tested, call Athalene at Johns Hopkins Hospital at 410-614-6604.

Reedy takes donor search into her own hands

Sunday, July 26th, 2009

Published: July 24, 2009 10:13 am
By TAMMIE TOLER
Princeton Times

PRINCETON — When the chills set in last February, Sue Reedy thought she had a cold.

“I started chilling, literally shaking all over,” the grandmother and longtime Concord University Game Room manager recalled. “I had the electric blanket up to about way high, and I still couldn’t get warm no matter what I did.”

The spry Athens lady had only settled into the newfound freedom of retirement last summer and was determined to combat what she and Dr. Marshall Long believed at first was a sinus infection head-on. As she got about halfway into her second round of antibiotics with no sign that the symptoms were going away, Reedy called the doctor again.

As she recounted the last few grueling months, Reedy remembered telling the doctor she was worried “there’s something bad wrong with me.”

When the results of her blood work returned, Reedy was right. Long advised her that testing revealed both her kidneys had failed at the same time. As her body became unable to handle the waste her kidneys previously filtered, Sue was getting sicker and sicker.

“Dr. Long called me and said, ‘Sue, go to the hospital and go now,’” she said.

After spending one night at Princeton Community Hospital and undergoing her first dialysis session, Sue quickly transferred to Morgantown and Ruby Memorial Hospital. There, she hoped to find answers as to what caused her sudden renal failure, but all she learned was that she may never know.

“They said it was like a huge umbrella, and there was like a million things under that umbrella that could have caused what happened to me,” Sue said.

After a brief stay in Morgantown, Sue returned to Mercer County, where her treatment now requires careful monitoring of her fluid intake and dates with dialysis three days a week. She’s the first to acknowledge that she’s doing remarkably well, considering the dramatic change the illness has made in her life.

The grandmother of three, Sue once watched her grandchildren almost daily for her son, Shane, and daughter-in-law, Sandy.

“It threw everything out of whack. I did keep the grandbabies a lot, and I would pick them up from school,” she said. “So, this has not only affected my life, but it’s changed things for Sandy and Shane, too.”

Now, Jacob, Josh and Sarah go to a babysitter, and that’s tough for the little ones to understand. That, in turn, leaves Sue with a heavier heart.

“They just know that I’m sick. They want to know why I can’t pick them up early from the babysitter, and I just have to tell them that I’m too sick,” she said.

Facing weight loss and the myriad complications that come along with renal failure and dialysis treatment, Sue said she’s also racing against the clock in hopes of finding a possible kidney donor. She hoped to seek treatment at a medical center in Johnson City, Tenn., because she believed officials there moved more quickly on kidney transplants.

When her insurance company nixed the plan, Sue shifted her hopes to Charleston.

“They won’t do kidney transplants after you reach a certain age,” she said, explaining why she’s taking steps to find a donor on her own.

According to the Mayo Clinic website, www.mayoclinic.org, kidney donors are generally 18-70 years old, in good health and display normal kidney function and anatomy. Pairing a donor and recipient requires a blood type, antigen match, and cross match, which can only be evaluated by trained medical officials.

So far, Sue isn’t on an official transplant list, and she fears she’ll run out of time to reverse her renal failure if she waits on traditional routes. She’s counting on family and friends to spread the word of her condition in hopes that a possible donor may be identified.

She’s distributing flyers containing basic information, but she still understands a decision to donate will be difficult for anyone.

“Most people won’t be interested in being a donor. I know that. There’s surgery involved, and that can be tough,” she said.

She doesn’t want to put any pressure on any possible donors, but Sue also said she can’t sit idly while her days on dialysis continue indefinitely, limiting her to 32 ounces of fluid in a 24-hour period and leaving her weakened in the process.

“I’m going to give anything a try,” she said.

She encouraged anyone interested in possible donation to contact her at (304) 384-7683.

— Contact Tammie Toler at ttoler@ptonline.net.

What if someone you barely knew offered you one of their organs?

Thursday, July 23rd, 2009

By Glenn Wallace/Staff Writer/gwallace@santamariatimes.com

Lori Caldwell donated a kidney to Jerry Glover, of Ventura June 24 at the UCLA Medical Center. Caldwell was out of the hospital in three days. The donation happened about a year after the two met at the funeral of Glover’s father.

Bryan Walton/Staff
What if someone you barely knew offered you one of their organs?

That is just what happened, when Jerry Glover of Ventura received a donated kidney from Lompoc’s Lori Caldwell last month.

“Made my life just a hundred percent better,” Glover said, describing how the donation freed him from endless, draining dialysis treatments.

“It’s not as big a thing as it sounds like. The surgery was nothing,” Caldwell, 47, said, downplaying her actions.

Since the kidney transplant surgery June 24 at the UCLA Medical Center, Caldwell said, she has completely recovered, and enjoys the same kidney function she did with two.

“It’s amazing we have two kidneys when you can function just fine with one,” Caldwell said, describing the surgery — four laproscopic incisions less than an inch long, and one three-inch cut along the lower abdomen where the kidney is removed. She was out of the hospital in three days, and refers to it as the easiest surgery of her life.

The donation happened about a year after the two met and began talking at the funeral of Glover’s father, who was also named Jerry.

“I was real close to his dad,” Caldwell said. “Big Jerry talked about his son so much, I felt like I knew him all these years.”

In a way, she really had. Caldwell said a baby sitter for her daughter actually dated Glover. “So it actually goes back 25 years.”

When his own kidneys stopped working in 2006, the 46-year-old Glover began dialysis treatment.

Though dialysis will remove water and some toxins from the blood, it is not a perfect solution, and leaves patients exhausted after each treatment, which must be done, on average, every two to three days.

Glover said he got on the kidney transplant list, but the wait was estimated to be seven years or longer.

“By then, some patients can become so sick that they’re not good candidates for surgery anymore,” Caldwell said.

She would know, having worked as a bus driver for medical patients to and from dialysis treatment years earlier.

After hearing about Glover’s situation, and realizing they shared a blood type, Caldwell told him she would be interested in looking into donating a kidney for him.

Glover said he was tentative at first about the offer.

“You don’t want to push anybody. If they have any doubt in their mind, you don’t want them to do it.”

“But I called her later, got to know her, and she was serious,” Glover said.

For a year, Caldwell and Glover took a series of tests to confirm that her kidney would have a good chance of being compatible with Glover, that she could live without complication with only one kidney, and that both individuals could handle the strain of the surgery.

Months went by, but the doctors finally announced that everything looked fine to proceed.

That day, Caldwell said, she did feel some nerves about the donation, but she felt calmer as the surgery date approached.

With the help and support of her mother, aunt and best friend, Caldwell said, they made the drive down to UCLA, and had the surgery.

Glover is currently taking heavy doses of anti-rejection drugs, and has yet to return to work, but says he already feels immensely better, and has kept in touch with Caldwell, the two of them calling every other day.

“Obviously now we have a pretty good friendship,” Glover said. “I’m sure we’ll be friends forever now.”

Caldwell is not the only Lompoc woman to generously give an organ to a friend in need. In February, a similar story occurred between two Lompoc residents, Rachel Viramontes and John Ruckman.

Viramontes, 29, and her husband met Ruckman and his wife Carri through co-workers, and two couples became close friends.

“We just started hanging out — game night, watching ‘24’ once a week, regular potlucks,” Viramontes said.

Then the news came that John Ruckman’s kidneys were failing due to a hereditary disease.

To save money for the medical costs, the Ruckmans moved into the basement unit of the Viramontes’ house. Within a few months, the 30-year-old Ruckman had to go on dialysis.

Meanwhile, initial tests showed that Viramontes was an excellent donation candidate.

“I read all the information, I talked to my doctor, and I talked to my family,” Viramontes said.

Viramontes, who now lives in Concord, Calif., also said it was easier than she thought to give a kidney.

“You just have to be willing to help,” Viramontes said. “It was nice to help out a friend.”

July 21, 2009

Collinsville woman calls donating kidney to sister ‘a privilege’

Thursday, July 23rd, 2009

Martinsville Bulletin
Thursday, July 23, 2009

Barbara Hubbard of Collinsville gave up a kidney, but she gained something far more precious in return: her sister’s life.

Doctors in Massachusetts recently removed one kidney from Hubbard, 62, and transplanted it into her sister Mary Link, 59, whose own kidneys had failed. Hubbard said the experience was “thrilling.”

“It was a pleasure, a privilege to do this for Mary,” Hubbard said. “It’s so very exciting to know she’s healthy and her body’s working.”

Decades ago, Link began taking a long-term prescription medication that had a side effect of kidney damage. It was then Hubbard offered to donate a kidney if Link needed it.

“I promised my sister about 25 years ago, if she ever needed me, I’d be there for her,” Hubbard said.

When Link’s kidneys eventually failed and it came time to make good on her promise last summer, Hubbard said, “I never hesitated a moment. How often do you get a chance to save your sister’s life?”

Link’s three sisters and their cousin volunteered to be tested to see if they were suitable donors, but because the process is so extensive, doctors started with Hubbard and only tested one person at a time.

Hubbard went through hundreds of thousands of dollars of tests, most of them at Memorial Hospital in Martinsville, because doctors “wanted to make sure I wasn’t risking my life to save Mary’s,” she said. She also met with a donor advocate to make sure she was making the decision of her own free will.

When someone donates a kidney, the recipient’s insurance pays for everything, said Barbara’s husband, Frank Hubbard.

Before she could go through with the surgery, doctors wanted Barbara Hubbard to lose weight. With her sister’s life at stake, she stayed motivated and shed 50 pounds in several months.

“I had the weight of the world on me” to succeed, Hubbard said. “I ate like I was supposed to, and I exercised on the treadmill.”

Meanwhile, Link had started on dialysis in February but “probably should’ve started it earlier,” Hubbard said.

Dialysis can be done for a maximum of seven years. If Link had remained on the transplant list for people in need of kidneys, she would have been low-priority for an organ because of her age, Frank Hubbard said.

When the time for the transplant came in June, Barbara Hubbard traveled to the University of Massachusetts Memorial Hospital, near where her sisters and mother live.

Hubbard said she never worried going into the surgery.

“My mother was panicked. She’s 94 years old and has two daughters going under the knife,” Hubbard said. Fortunately, she added, “Nothing happened. It was a perfect surgery.”

Hubbard was in the operating room for four hours, and her sister’s surgery lasted two and a half hours. Doctors did not remove Link’s original kidneys because it is safer to leave them in, so she now has three kidneys.

The donated kidney began working immediately — so well, in fact, that doctors released Link from the hospital two days earlier than anticipated. The two stayed with family in Massachusetts as they recuperated and were cared for by their older sisters, Lynnie DeHart and Susan Henke, both of Massachusetts.

Spending that time together as a family “was a gift in itself,” Hubbard said.

Hubbard also came home from the surgery with a bag of gifts the medical team presented to her on her third day in the hospital. One was a green rubber bracelet that is given only to organ donors. Green symbolizes new life, she said, and it is printed with the words “endurance,” “hope,” “courage” and “bravery.”

“I have been wearing it ever since it was put on my wrist,” Hubbard said. She also received a kidney-shaped pillow with notes written on it by the surgeon, transplant support team and Hubbard’s family, as well as a certificate saying she had saved Link’s life.

“Every one of the gifts really touched my heart,” Hubbard said. “When I asked if Mary was going to get gifts, too, I was told ‘No’ because she received the most precious gift: my kidney.”

Since the surgery, Hubbard said of her sister, “she looks alive again.” Before, “she was just dragging. She had no energy.”

Transplant surgery is more difficult for the recipient than the donor, Hubbard said. Link will be out of work two to three months from her job helping mentally challenged clients find employment. In contrast, Hubbard, a former classroom teacher who now runs a business as a reading tutor, resumed working two weeks after the surgery.

Link will take antirejection drugs for the rest of her life — which, thanks to the donated kidney, is expected be much longer.

The life expectancy for transplant patients receiving kidneys from living donors is 25 to 35 years, Hubbard said, as opposed to 10 to 15 years if the kidney came from a deceased donor.

“I think it is a shame to bury bodies filled with organs that are potentially lifesaving,” Hubbard said.

For living donors, the kidney is one organ that can be given without too much impact on the donor’s quality of life. And if something happens to Hubbard’s remaining kidney, as a donor she would “jump to the top of the transplant list,” she said.

Hubbard said she does not even notice her kidney is gone.

“I can’t even feel any difference,” she said. The only impact to her lifestyle as a result of the surgery, she said, is “I just have to watch my salt intake.”

Too much salt can cause high blood pressure and damage her remaining kidney. Hubbard also cannot take ibuprofen, “and I can’t play football,” she laughed.

But despite these minor caveats, the experience of donating a kidney “enriched my life,” Hubbard said.

“My sister Sue told me, ‘Not only did you give our sister the gift of life, you gave the whole family the gift of life, because what would we have done without Mary?’” she said.

“It wasn’t like I had to really think about it. I almost was embarrassed when people were complimenting me, because it wasn’t a decision. It’s just what siblings do.”

What if Zell Kravinsky isn’t crazy?

Wednesday, July 22nd, 2009

One day early this summer, a multimillionaire sneaked past his wife and four kids, drove to Albert Einstein Medical Center, and donated one of his kidneys to a total stranger. Now he’s making noises about donating his second kidney as well.
By Jason Fagone -Philadelphia Magazine – December 2003

After word got out that one of Philadelphia’s most eccentric millionaires, Zell Kravinsky, had donated a kidney to a random stranger, a reporter at one of America’s most prestigious newspapers was sent to interview him. What the reporter found wasn’t a magnate in pinstripes, but a morose guy wearing a thrift-store shirt. What happened next is the reason the reporter insists that his name and his newspaper stay secret — because within a few hours, the so-called nutcase had persuaded the reporter to sign a contract that required him to donate his kidney. Zell would pay him, or a charity of his choosing, $10,000. (”Name your price,” Zell had said, looking the reporter in the eye.)

The reporter was a willing participant, and he agrees that “the enthusiasm was mutual,” as Zell says. But it’s not unusual for Zell to proselytize. He did it two months later, on an airplane above Ohio. Zell turned to his seatmate, yanked up his shirt, and flashed his protruding ribs and his three-inch kidney scar. Zell told his seatmate that he’d do whatever it took to persuade her. “I think I freaked her out,” he says.

Then, in October, Zell reconnected with an ex-girlfriend he hadn’t seen in years, and he went through the same routine. “I told her that I would come to California where she lives,” Zell says. “I said, ‘I’ll hold your hand, the whole thing. I’ll do anything you want. I’ll put you at ease.’” He assured her that the scar wouldn’t be disfiguring, pulling up his shirt to show her. On the contrary, he said. The scar would be sexy. If he weren’t married, in fact, and he had a kidney-donor lover, “I would kiss it so tenderly,” he says. “The parts without scars would be less beautiful.”

Zell has been obsessed with kidneys ever since reading a Wall Street Journal article in 2002. Zell reads the Journal because he’s a real-estate magnate, a multimillionaire, and he likes to keep his eye on the market. But this article wasn’t about real estate. It was about the dire public health crisis that is kidney disease. More than 3,500 Americans die each year for want of a kidney. Three hundred thousand-plus souls languish in dialysis — a blood-cleaning process that leaves you dog-tired and drained, six hours a day, three times a week. Zell decided he could spare part of himself to save a fellow human from this hell.

Zell is married. His wife, Emily, is a psychiatrist who specializes in eating disorders. They have four kids, ages four to 12. They live in Jenkintown, on a quiet block that’s worthy of Norman Rockwell. Zell’s house cost just $141,500, although he could have afforded something infinitely more lavish. As of a couple years ago, Zell owned scores of commercial properties across the Midwest. Zell won’t reveal the size of his fortune, but it had to be at least $45 million. He’s given away that much money.

“The only cure for the disease of wealth,” says Zell, “is to spend money.” Starting last year, he embarked on a charity spree, focusing on public health causes. (His sister, Adria, was a smoker who died of lung cancer in 1984, stamping Zell with a passion for public health.) Last year, Zell and Emily gave $6.2 million to the Centers for Disease Control, and they gave smaller amounts to other related causes until Zell had burned through $15 million.

It only whetted his appetite. He wanted to give it all away — including his kids’ college tuition savings. “Cooler heads prevailed,” he says. But just barely. This spring, Zell gave $30 million in real estate — the bulk of his portfolio — to Ohio State University to start a school of public health. He doesn’t have anything left for retirement.

“Well, first he decided to give all his money away, and I thought, well, that would be very nice,” says Zell’s father Irving, who is 90 and lives with Zell’s mother Reeda in Center City. “I thought that would satisfy him, but it — ”

Reeda interrupts him. “It’s satisfying some need in him as well as doing something good for someone.”

The need demanded a more extreme sacrifice. When Zell told his wife about his kidney plan, she said she’d divorce him. Zell’s parents, too, begged him to back away from the scalpel. “We told him the same thing we’ll tell you,” says Irving. “He’s a family man. He’s got four little children. … ”

Discouraged by his family’s reaction, Zell started telling some friends. One was Barry Katz, a developer of luxury homes in Connecticut.

“I tried to talk him out of it,” says Katz.

“He hung up on me,” says Zell.

Trapped between his ideal and his loved ones, Zell chose the ideal. On July 22nd, he sneaked out of the house and had his kidney removed at Albert Einstein Medical Center. When he woke up the next day, he was out of his mind with pain. He couldn’t take the hospital’s narcotics, because they messed with his problematic stomach. But Zell was a trouper. When the TV cameras came, he struggled not to slur his words. He wanted people to see the procedure as routine, so they’d want to donate kidneys too.

Which is basically the truth. Giving a kidney isn’t the huge production it used to be. Back in 1954, when the first kidney was successfully transplanted, doctors had to crack you in half, slice three-quarters of the way around you, and yank out a rib. These days, it’s all done with tiny incisions and a fiber-optic camera. You can check into the hospital on a Thursday, regain consciousness on Friday, pop some narcotics, and three days later be home watching Monday Night Football. The risk of dying is about the same as from a hernia operation.

But there is a risk. Only 151 people have given kidneys anonymously to non-family members. By proselytizing for kidneys, is it possible Zell is asking too much of us? And if he is, can he stop? The terrifying thing about Zell’s do-gooding is that he doesn’t know. “I want to go on giving,” he says, “even if it leads me into poverty or disgrace or” — he stutters — “or an early death.”

There are many more needy people on Earth than can be helped by one man, even a rich and brilliant man like Zell. His level of commitment either makes him a chump or an exemplar, a nutball or a saint.

Would we all be better off if we followed Zell? Look at what happened to the reporter who signed Zell’s contract. When he told his mother about the operation, she started bawling. “I had never heard her scream like that since my grandma died,” the reporter says. He eventually decided not to go through with the operation, after his mother cried and his newspaper threatened to fire him. But he still thinks giving a kidney is the right thing to do. He thinks that, because Zell convinced him: “I mean, you want to talk coherent? He’s as coherent as you get.”

After the donation, Zell went on a media blitz, trying to get as many people to donate kidneys as possible. Reactions fell between two poles of exclamation — Isn’t this guy odd and Isn’t this guy amazing.

Let’s start with odd:

One late-summer afternoon, I’m walking with Zell toward the playground near his Jenkintown home. It’s where Zell conducts his interviews on nice days — his wife Emily won’t let reporters in the house. On the way, we run into one of Zell’s old friends, a man named Alan Berkowitz. I ask Berkowitz, a short man wearing wraparound sunglasses, what he thinks of Zell’s kidney donation.

“Ah, well, Zell and I haven’t even discussed that,” he says, laughing nervously. “But, ah, what can you say? It’s a great thing.”

“You can tell him if you think it’s stupid,” Zell says.

“No, it wasn’t stupid. It was a good thing to do. Anything else, I’ll discuss with Zell later.”

Even Zell’s friends don’t know what to make of their post-op buddy. “The altruistic issues have always been very interesting,” says Zell’s longtime friend Jim Kahn. “But the altruistic issues have often been … tinged with … things that made us ambivalent. Sometimes there’s a slightly pathological element to them.”

There’s also a cultural element to that ambivalence. Most educated left-leaning types believe in helping the poor and doing good deeds. We listen to npr and cluck our tongues about Liberia. We’ve got two cars, two coffeemakers, two video-game consoles, two plasma TVs, two laptops, two lawn mowers. Two kidneys. Zell is a walking reminder of everything we could be doing to help other people, but don’t. “We’re all looking for the way we can make a difference in the world,” says the reporter who signed Zell’s contract (and later backed out). “He just looks at you and says, ‘Why don’t you do this?’”

Okay — now let’s talk to the people who find Zell amazing:

Today, a morning in late September, Zell is at Ohio State, where he’s given $30 million. He’s sitting in a room with 20 health-care researchers, wearing an untucked blue flannel. Zell is in top verbal form. He charms and flatters the researchers. After the meeting, one woman comes up to me, flabbergasted. “It’s like 1940s Frank Capra,” she says, tittering. “At first I thought it was a tax dodge, but this guy is actually generous!” Another professor tells me, “Some of us were joking [that] maybe we should start wearing flannel shirts.”

He’s joking, but he has a point. Even though Zell is unconventional, says his friend Jim Kahn, “He’s always managed to in the end get these great results.” That’s one difference between genius and lunacy: success. And if there’s one thing Zell has a genius for, it’s success. Part of Zell’s genius is the way he has leveraged his kidney donation for personal benefit. It’s possible — even probable — that he’ll make money from it. How? In September, he launched a real-estate investment fund, partially made possible by the kidney publicity. Zell isn’t collecting commissions now, but he will in the future. (He says they’ll go into a charitable trust.) Already he’s sinking 40 hours a week into massaging the numbers.

The fund lays bare one of Zell’s blind spots: For such a smart guy, he’s unsophisticated about how to make a difference. Why start a fund? Why not make another $45 million and give that away instead? (Zell says he can make millions whenever, now that he’s developed his system.) He often name-drops politicians, implying he has influence — e.g., “I could get Specter’s people involved, they owe me one” — but political gears don’t get greased without infrastructure, and Zell has none. No lobbyists, no foundation. No focus. Any new charitable emergency threatens to throw him off track. In late October, he tells me he’s planning to travel abroad with a woman who ministers to aids patients. Zell is going to India, just like Gandhi. “You know, Gandhi was a big influence for me,” he says, perhaps not aware of how grandiose this sounds.

Many people besieged by the media end up changing their phone numbers or going unlisted. Not Zell. He wants to hear from people who need him. Now he spends a good part of each day answering pitches — some brazen, some sincere, some just loony.

There’s the guy who needs $40,000 to pay off a credit card (Zell said no), and the Nigerian limo driver from New York who wants Zell to help him fight a lawsuit (Zell gave him two hours with his lawyer, worth $700). There’s the lady from Brooklyn who wants money to start a day-care center, and the lady from Russia who says Zell is her long-lost cousin, even though she spelled his name incorrectly in her letter.

Zell has gotten pleas from actual family members, too. Which creates a dilemma. If he doesn’t help Uncle Irv pay off a credit card but he gives cash to strangers, he looks callous. He can save more lives by giving money to fight third-world diseases than he can by giving a friend $2 million to buy a house. The problem is, as Zell points out, “The suffering of people you like or love is more immediate.”

It’s not that Zell isn’t tender toward his family members. He has just decided to discipline himself toward a higher goal. It’s fairer, he believes, to love everybody instead of loving a select few. “I truly believe all of us are brothers and all of us are sisters,” he says. If we could all embrace each other, “There’d be no more war, no more ethnic jealousy.” Zell doesn’t think this is a neurosis. He thinks it’s a calling.

And he put this conviction to its extreme test when he met the recipient of his kidney — Donnell Reid, 30, an African-American woman from Mount Airy who took the bus to her dialysis treatments every other day. They couldn’t have been more unalike, but Zell still risked his life to save her from certain death. He goes as far as to call her his “sister” — a sentiment worthy of Gandhi, Yitzhak Rabin and Martin Luther King, the 20th century’s great martyrs to universalism.

Zell’s love ranges over the entire world. But does it have any depth? Donnell is lovely, and we should all be glad she’s alive, but to Zell she’s a rhetorical tool. He knows her about as well as he knows the airline stewardess he met in September who gave him an extra packet of pretzels and “had a smile for everyone. Someone like that is a true philanthropist, a greater philanthropist than I am,” he says. Zell loves the stewardess like he loves Donnell like he loves every person he meets. Abstractions all. It’s simple to love an abstraction.

In a snippet of Zell’s poetry — “It’s the thing I do best,” he says, “better than philanthropy, better than real estate” — he speaks of “the brevity of the cities of men (the insolidity of their houses)/and the longevity of love.” But love of this sort — saintly, divorced from real life — can be dangerous. Just look at Gandhi: When his wife and kids got sick, he withheld the doctors’ meat-based cures rather than compromise his vegan ethics. Being human, George Orwell wrote in an essay on Gandhi, means that you risk being “defeated and broken up by life, which is the inevitable price of fastening one’s love upon other human individuals.” Hard-fought love — not Zell’s diaphanous affection, easily bestowed and just as easily withdrawn — is raw, and it hurts.

Zell’s wife Emily wouldn’t talk to me for this article, but I do meet her briefly one weekend morning at her home, while I’m waiting for Zell. She emerges from the house and walks toward me. “Zell’s watch stopped,” she says pleasantly. “He’s going to be another half an hour. He’s meditating.” She rolls her eyes a little bit and smiles — a little shared joke between us.

Then I ask if I can interview her. “It’s against my wishes that the story be published,” she says, and turns on her heels. I tell her there’s nothing I can do.

“Oh yeah there is,” she says angrily. “You can get your hands off the keyboard.” Then she walks into her house and slams the front door with the righteous anger of a woman exerting her only bit of control over an absurd situation.

I imagine Emily must feel like Katie Carr, the protagonist of How to Be Good. In Nick Hornby’s novel, Katie’s husband suddenly decides to devote his life to helping others. Katie finds herself avoiding the newspaper, because she sees the stories “in terms of potential trouble for my family.” One article about Afghan refugees “I actually tear out and throw away,” Katie laments, “because it contains enough misery and hardship to starve us all.”

Zell has not only strained his marriage. He’s strained his relationship with his kids, too. His oldest son used to let Zell tell reporters that he approved of Zell’s financial giving. Now the kid has asked Zell to cut it out.

This is tough on Zell. He talks about his kids often, and he showed me a tender, bittersweet poem he wrote about his oldest son. In the poem, Zell says he’s proud even though his son struck out during a Little League game:

All eyes are on my son. He takes a pitch.
We’re glad he didn’t swing for life’s a bitch
And it’s always bad but the bad is more
When you swing at every pitch however poor.

Rewind the tape of Zell’s life. See the kidney scar disappear. See Zell’s Midwestern domain evaporate. See West Philly devolve, the properties around the Penn campus that jump-started his empire grow shabbier and weedier, blight spreading toward the river. See the Tyvek sheathing those homes, the deeds with his name on them hurtling back into the laser printer trays. See the buildings fly apart, plank by plank, as his bank accounts thin out too, all the zeroes on those real-estate millions sloughing off like dead cells, from $45 million to $25 million to $10 million. … See frat parties rage at Penn while Zell’s sitting in his filthy grad-student apartment, reciting Eastern mantras and reading his beloved Paradise Lost, learning Milton’s credo about happiness — how it’s a condition liable to afflict a lot of fools. Keep rewinding, but don’t skip the scene in the English department library, where Emily’s meeting Zell for the first time at a faculty mixer, and they’re both laughing — why? And then you see it: The seltzer water from her bottle is magically spilling upward, from Zell’s crotch back to its place of origin.

Keep rewinding, and you may see a shot of Zell in North Philly, lying on a chilly swatch of ghetto pavement, his skull a mess of blood and bone. Step back frame by frame and you’ll catch the culprit — a mugger with a tire iron. Rewind farther and you’ll understand why Zell’s in the ghetto: to do good, of course, by teaching disruptive public-school kids who don’t want to learn. Now rewind eight years more, back to Dartmouth, where Zell’s schlepping Asian Studies textbooks, looking dazed, trying to figure out what to do with his life. One last scene you’ve gotta see. Zell’s 12, and he’s protesting at City Hall — something about housing integration in the Northeast, his first good deed, and it makes his dad proud, according to what Irving tells the newspaper.

Have you been watching Zell’s face? The transformation there is just as profound. Watch Zell’s sharp features soften, those hangdog grooves around the mouth blurring out. See the ribs recede, the hollow cheeks fill and the skin get oily, his limbs plumping like ballpark franks. Hit stop when you see Zell wearing his daddy’s Army helmet, parading around the Kravinskys’ modest Oxford Circle home. Zell (that’s his shtetl name) is young again, with a mop of sandy brown hair and an agile mind that’s filling rapidly with his father’s idea of righteousness — his father, Irving, an old-world Russian Jew who never shed his faith in Communism, or at least its basic ideals.

That was back when reasonable people could really believe in caring and sharing, without being shouted down by the mob. A pressman by day, Irving played Paul Robeson records at night, and he taught Zell the way the world works: how it’s run for the ruling classes, how blacks are oppressed, how ambition’s a foolhardy trait — better to aim low and never attract attention. He just wanted Zell to get steady work. When Zell got his public-school job, Irving cracked a bottle of champagne. “He was euphoric,” says Zell.

But Zell’s sister Adria never approved of his teaching job. She thought it was a waste of his talents. Zell listened. He has another sister, Hilary, a psychiatrist in Missouri, but Adria was more of a kindred spirit. “She was bright and funny and pretty and everybody liked to be with her,” says Zell. “She was generous toward people, and they took advantage of her. She had no worldliness.”

Adria smoked. Zell often told her to quit. She kept smoking. In July of 1984, Adria was diagnosed with terminal lung cancer. Zell watched her waste away to the point where she weighed nothing. Her organs failed, and she went blind. She died in December. “When my daughter died,” says Zell’s mother Reeda, “he felt, why didn’t it happen to him?” Zell says, “When she died, I, ah — ” He pauses, shakes his head. “I went into a tailspin.” He became severely depressed. “The only thing that pulled me out,” says Zell, “was the thought that I would do good in her name.”

He would have sacrificed his own life to save Adria’s, certainly. But now Zell says he might give up his life to save anyone’s, provided the person could perform more good than Zell. If some miracle doctor somewhere needed a kidney, Zell has said he’d give his second kidney, too. When you save a life, he says, “You’re saving the universe. That’s what it says in the Talmud. To save a life, you’re entitled to break any law.” Of course, that’s also the rationale of the guy who just drove a truck into Red Cross HQ in Baghdad. “It’s a wonderful thing,” says Zell, “to die performing a moral act.”

“If he does that, then there’s something really wrong,” says Paul Fink, a professor of psychiatry at Temple University School of Medicine. “Then we’re dealing with pathology. Real pathology. And if I was his wife, I’d have him committed.”

Zell’s statements, even if they’re only half-serious, put his loved ones in an impossible position. Think about his parents. To what lengths should they go to make sure they don’t lose their only son? They’ve already lost a daughter. And Zell is fully aware of the dimensions of that pain.

“There’s never a day I don’t think about her,” he says of Adria. “If she’d been around, I wouldn’t have given anything away, and I would have saved some of my money for her.” Zell imagines that if Adria were still around, she’d be an ally in his quest for the moral life — unlike his parents, he implies. But the truth is that they’re not as unsupportive as he imagines.

“He’s a good guy, there’s no question of it,” says Zell’s mother Reeda.

“Now that it’s over,” says Irving, speaking of the kidney operation, “we’re sort of proud of him, but at the time, we didn’t agree with it.”

When I tell Zell about his father’s statement, his eyes bug out.

“He said that?” Zell says incredulously. He looks down and scratches his head. “You weren’t leading him or anything? Like, ‘Aren’t you proud of your son?’”

“No.”

Zell pauses and looks up, glazed over with innocent wonder. Softly, he says, “He hasn’t told me that since I was 12 years old.”

Zell wants me to give a kidney. The offer’s the same as with the reporter from the major American newspaper. He’ll pay me $10,000, and I’ll go under the scalpel. Together we’ll challenge the federal law that bans organ sales — the law that Zell believes is unjust and consigns thousands to their deaths. Aside from the political statement we’d be making, my donation itself would save a life, maybe two. Zell points out that since I’m a big guy, docs could halve my kidney to give to two children.

I think I’d like to do it, but I need to be totally convinced. So I decide to play devil’s advocate. I try to make a case for keeping my starting lineup of organs intact. Like, what if my spouse objects? Zell huffs. “Why should a spouse approve of the decision that you’ve made with perfect moral clarity?” he says. “If you’re a bit more morally evolved than your spouse, why should you be dragged down to his or her level?”

“So what should I tell my girlfriend?”

“Tell your girlfriend that you’ll be five times as good a lover, because you’ll have love in your heart.”

“But how do I convince my mother?”

“Compare it to other, more risky activities that she wouldn’t bat an eye at.”

I’m losing the argument. So I play my trump card.

“I don’t think I’m a good enough person.”

Zell makes an ack sound with his throat. “I used to pray,” he says. “I used to pray to God to be good. To make me good. I used to fantasize about a pill I could take that would make me good,” he says. “Then I realized it’s putting the cart before the horse.” And that’s when I realize that Zell’s no different from anybody else on this brutish planet. Zell isn’t a saint. He’s a sack of water and muscle and bone. A flawed man who isn’t good, but is trying to be better.

“First,” he says, “you do the good deed.” b

E-mail: jfagone@phillymag.com

Wife of Dover man who received transplant gives her kidney to help another

Wednesday, July 22nd, 2009
By ADAM D. KRAUSS
akrauss@fosters.com
Thursday, July 16, 2009

DOVER — Down in New Jersey, a retired police officer was undergoing dialysis Tuesday, counting the days until an “angel” from New Hampshire arrived in New York City to give him one of her kidneys.

“I’m 100 percent on board with this,” said Jennifer Gregoire, who recently sold her home in Rochester and is moving to Newton.

She’ll leave today and go into surgery at New York-Presbyterian Hospital/Columbia on Friday, ending a mission she began earlier this year to give the gift of life.

But really, her quest is rooted in the kidney transplant her husband, Ken, a Dover native, received six years ago from his sister Michelle.

“I wouldn’t have him now if it weren’t for her donating her kidney,” Gregoire, 37, said. “I’m trying to pay it forward.”

She and Jim Collis, a 49-year-old married father of two teenage children, have a website — floodsisters.org — to thank for their connection.

Run by the Flood Sisters Kidney Foundation of America, the site allows people in need of a transplant to connect with people willing to donate. Three sisters started the foundation in 2007 to spread awareness of the alternative ways people can take to finding an “altruistic,” or unrelated, living donor without going through the national waiting list.

The sisters encountered challenges in their pursuit until they turned to an online classifieds source to find a donor. Results were mixed, and some people wanted money for donating their kidney, which is illegal. Soon their search gained media attention and calls from people across the United States, and even the world, started coming in. Their 68-year-old father was saved.

“We’re very grateful for saving our dad and putting it forward to save others,” said Jennifer Flood.

So far, the site has 63 members —34 patients and 30 donors — but Collis will be the first one to receive a transplant.

As of Tuesday, there were 102,386 people on the donor waiting list, according to the United Network for Organ Sharing, a nonprofit organization that administers the nation’s organ procurement and transplantation network. Nearly 9,350 transplants took place between January and April.

Collis used to be on the list, which yielded potential matches. But with the first, his doctor didn’t feel comfortable using the kidney because it came from a young child, he said. Another match was identified for Collis, but the donor was already deceased and kidneys from cadavers do not have the same success rate as those from the living. Besides, Collis already knew that Gregoire was undergoing testing required before surgery so he passed on the cadaver donation in favor of Gregoire.

“Ninety-eight percent of transplanted kidneys begin working immediately versus with a cadaver it’s only around 50 percent,” said Collis, who lives in Clifton, N.J. and was forced to retire when he started dialysis two years ago for an autoimmune disease confined in his kidneys, which filter blood.

Gregoire, who works for an affiliate of Exeter Hospital training customer service staff, had to wait a few years after her husband Ken’s transplant before she could volunteer for the donation. He’s “doing great now,” but the transplant was followed by a stroke and medical setbacks that prevented her from being able to take the time to prepare and heal from surgery.

Fifty-five years after the first successful living donor transplant, Gregoire said she expects to be out of the hospital by Sunday and back at work by July 27.

The transplant will be over, but the friendship will remain.

Collis was the first person the Gregoires contacted after coming up with a list of 15 to 20 people who were in need of a transplant and turned to the Flood Sisters foundation for help. Jennifer said she felt “uncomfortable” choosing someone. In Collis, she saw a young father with teenage children who made a career out of helping people.

“I think the biggest thing was I wanted him to have the opportunity see his kids graduate from school and walk his daughter down the aisle,” she said.

Gregoire called Collis one night and introduced herself. He recalled being a bit skeptical at first after coming across “deceptive” people claiming to want to help through online classifieds. They talked more, and soon he knew she was “the real thing,” he said.

The transplant was set in motion. He contacted his transplant coordinator at the hospital. She reached out to the hospital. The hospital sent her a dozen vials for her blood samples. She complied and the hospital confirmed their blood type compatibility. By now it was early June, and she was off to New York for tests.

It would be the first time they met.

Collis’ wife, Diane, cooked her famous lasagna and everyone became close friends. The wives bonded over the changes their husbands’ experiences brought their family, Gregoire said. Clearing snow, shoveling the roof and mowing the lawn are no longer jobs just left to the guys, she said.

“We’ve really created a nice friendship,” she added.

“When someone does something like this,” Jim Collis said during dialysis Tuesday, “there will be a bond forever. … I would say Jennifer is without a doubt an angel and by her making her decision to donate a kidney it’s giving somebody else their life back.”

Dialysis has taken its toll on him. He said he felt “horrible” Tuesday but hopeful about the transplant and grateful to Gregoire’s family for their support.

“I just think it’s a great gift, and I don’t think a lot of people realize you can live with one kidney” and rely on it to do the work of both, Gregoire said.

“I think more awareness is needed,” Collis said. Though retired, he said he’s looking forward to volunteering, maybe with the Red Cross or another public service outlet, as soon as he can.

Transplant donor a match made in radio

Wednesday, July 22nd, 2009

DJ grants more than listener request
Updated: Thursday, 16 Jul 2009, 8:12 AM EDT
Published : Thursday, 16 Jul 2009, 8:11 AM EDT

ALBUQUERQUE, N.M. (KRQE) – An Albuquerque man who had been on a waiting list for a kidney transplant in New Mexico and Arizona learned that he didn’t need to go that far or wait that long to get the life-saving gift.

Ed Ortega was simply a listener of 104.1’s The Edge. He would call into Joe Toth’s radio show to comment on issues. Toth is known as “Dex” on the airwaves.

Ortega told the DJ that diabetes had taken his sight.

“We call him the blind guy,” Toth said. “He’s been calling us for a little over a year.”

“We threw out the idea of doing movie reviews for the blind,” said Ortega.

So that’s what Ortega would do. Then last year doctors told him the diabetes caused his kidneys to fail and that he needed a transplant or could die in less than year.

Doctors also told him it could take up to five years to get a call that a donor was available. In the meantime, Ortega undergoes dialysis several times a week.

“He always calls us when he’s in that dialysis chair,” Toth said.

During one of those calls Toth asked his listener what it would take to get a kidney transplant. Not very much, Ortega said, just a match in blood types.

“After he told me I was like, ‘Well I’ll give you mine,’” Toth said. “And I honestly just don’t see why not, you know?”

At the time Toth offered him a kidney the two had never met.

“I cried,” Ortega said. “I cried, got off the phone with him and called my wife immediately.”

It turned out Toth and Ortega are a match but not just in blood type. Also as friends.

“This is probably the third time we met in person,” Toth said at a 104.1 bash at the Launchpad Wednesday. “He usually just cracks jokes about mowing the lawn and trimming his bushes.”

Toth will have to go through more testing before the actual transplant, but it’s still not smooth sailing afterward for Ortega.

He also needs a pancreas. He’s on Arizona’s waiting list for that, too.

Ortega said he must raise $40,000 for his kidney transplant. His wife is also disabled and can’t work.

But he can’t get a pancreas without a kidney. Toth has given him an opportunity to get to that last step in order to get rid of his diabetes.

“It’s amazing that somebody would come out and do that,” Ortega said. “Especially somebody you don’t even know, that you’ve never really met in person.”

Ortega has set up a Web site to accept donations for his surgery at edstransplant.com .