FAIR Foundation Serves as a Guiding Light
Valley man lends his knowledge to patients

Organ transplants at a glance

Organ donation statistics:

· One person can save eight lives by becoming an organ donor and benefit 50 with tissues.

· There are 97,000+ people
on the transplant list in need
of organs nationally.

· Of that number, 3,000 are children under 10 years of age.

· Another person is added to the list every 14 minutes.

· One person dies every 90 minutes while waiting for a donor organ to become available.
(Source: OneLegacy, a Southern California organ procurement organization, Gift of Life Foundation, and the Center for Disease Control)

Support group: The Coachella Valley Hep C, Liver Disease & Transplant Support Group meets monthly on the second Monday at 11 a.m. at the Portola Community Center, 45-480 Portola Ave., in Palm Desert.
Details: 200-2766.
To donate: To become an organ donor, call OneLegacy at (800) 338-6112. To support new organ donor policies to reverse America's crisis, click here.

By Laura Waskin, The Desert Sun
[Edited by The FAIR Foundation - see bottom of article for clarification]

Life was looking pretty bleak for 36-year-old Brian Van der Wees.

A spa supervisor at the Marriott Desert Springs Resort, Van der Wees was rushed into the emergency room at Eisenhower Medical Center with cirrhosis of the liver.

Although Van der Wees had been suffering from degenerative symptoms of the disease for two years, he suddenly began to tailspin the afternoon of Sept. 4.

"Although he’d been at work that morning, Brian was yellow, bloated, and drifting in and out of consciousness when he was admitted to the emergency room," says Van der Wees’ sister, Brenda Gonzales.

"The doctors gave him just weeks to live. At the same time, we were told the discouraging news that the waiting list for liver transplants could take several months to several years -- or longer."

But then a miracle happened.

Three-time liver transplant recipient Dr. Richard Darling, a local dentist and President of The FAIR Foundation which helps transplant patients, received an email from a nurse and friend of Brian's, Silvia Hinojosa-Price, RN, telling him of Van der Wees’ condition.

Although he’d never met the married father of two, Darling immediately rushed over to pay Van der Wees a bedside visit.

"I knew there was no time to lose," says Darling, who heads up the 80-member Coachella Valley Hepatitis C, Liver Disease and Transplant Support Group, which is a subdivision of The FAIR Foundation. Darling added, "Brian had been young and athletic … I knew he would make a good candidate for a transplant. I also knew he and his family needed support."

While Darling called the Chief Hepatologist and Medical Director of Liver Transplant who saved his life, Dr. Donald Hillebrand at Loma Linda University Medical Center, Brenda Gonzales took care of the insurance company side of things.

Within two days, the red tape was gone and Van der Wees had been moved to Loma Linda’s transplant institute. Twenty-four hours later, he was on the transplant list.

Then the second miracle occurred: a donor’s liver became available within four days. Van der Wees’s surgery was scheduled.

"Normally, liver transplant surgery lasts between six and 16 hours," says Gonzales. "But Brian’s under the direction of surgeon Waldo Concepcion, MD, took under five hours. It was a perfect match."

As part of normal post-operative procedure, Van der Wees is spending the next month at an apartment complex near the hospital in Loma Linda. Although he is unsure of when he’ll return to work, he says the thoughts and actions of his co-workers are "my life-support system."

His co-workers at the Marriott donated over 400 hours of their vacation time to his family. His wife Tracy also works there as a massage therapist.

"It’s been so moving for me to see such unity and this example of unmatched kindness and generosity," says Van der Wees. "Like all the visitors, phone calls, flowers and prayers, it has sustained me from day to day."

He has even higher praise for Darling.

"But none of this would be happening if it wasn’t for Dr. Darling, whose knowledge and experience got the ball rolling. For my family, he’s our guardian angel and has kept my focus positive," says Van der Wees.

Says Darling of his work with other transplant patients: "We transplant recipients can serve as icons and give others hope. People can look at us and say, ‘if you made it, we can make it, too.’

"I believe God has kept me here for a reason -- to help others who are in the same situation."

Van der Wees’s father, Anton, agrees that Darling has played an instrumental role in his son’s survival. Both he and his wife, Reina, have moved from their home at Del Webb’s Sun City to care for their son in Loma Linda.

"Dr. Darling’s been our guiding light because he’s so knowledgeable," says Anton Van der Wees. "And we’re so grateful and appreciative to the doctors and staff at Loma Linda Hospital. Our family has always been very close, and we’re looking forward to Brian’s new life, and new future."

Brian Van der Wees wants to share his encouraging story with the organ donor support group someday. And although he knows the next six months are critical to do everything "just right," he feels like a bundle of energy.

"I’m like a 13-year-old kid again," he says. "I feel like I just want to get out and do so many things again. I have a new opportunity at life."

***
[FAIR Foundation edits: The title of the physician, Dr. Hillebrand, at LLUMC was incorrect; we corrected it. The surgeon's name, Waldo Concepcion, MD, has been clarified. The name of the nurse, Silvia Hinojosa Price, RN, who brought this patient's struggle for life to Dr. Darling's attention was inserted to give her proper recognition. Indeed, Van der Wees's original attending physician and gastroenterologist had told the Van der Wees's family that they were not referring Van der Wees for transplant and he was going to be allowed to die. Without Hinojosa Price's involvement Van der Wees would never have been referred for transplant and he would have been left to die at Eisenhower Medical Hospital. The facts in the right-hand column are regularly updated. The name of the FAIR Foundation and Coachella Valley support group information were inserted here on our website to bring awareness that the Coachella Valley Support Group is a sub-division of the FAIR Foundation and that patients may contact us for help and advice in getting to a transplant center. Verification of these facts may be obtained by calling Dr. Darling or Brian Van der Wees.]
***

Search ends with transplant for man

Marcel Honoré
The Desert Sun

La Quinta resident Richard Butler was in bad shape - "days from dying," his wife said.

A 66-year-old father of two daughters and two stepdaughters, this former city planning commissioner and Rotarian, was suffering from cirrhosis of the liver.

Butler's deteriorating condition meant he would eventually need a transplant. And, in June, that's what doctors told him. On June 21, he collapsed.

Butler's wife, Marty, took him to Eisenhower Medical Center, which does not have a transplant center. She said doctors told her Butler was in the end stages of liver disease and nothing could be done to save her husband.

After five days there, Marty said she took the initiative and had him transferred to Loma Linda University Medical Center, where doctors told her Butler was too ill - and too risky - for a transplant.

Neither hospital would comment specifically on Butler's case due to doctor-patient confidentiality.

A staff member at Loma Linda, however, put the Butlers in touch with Dr. Richard Darling, a dentist who's also president of the FAIR Foundation, which helps transplant patients.

"He immediately told me: 'There's a little secret out there for getting an organ,'" Marty said.

What Darling did was refer the Butlers to Dr. Donald Hillebrand, medical director of Liver Transplant at Scripps Green Hospital near San Diego.

Butler was soon cleared for a new liver on July 11 and received it on July 15.

While the first month is delicate, he's doing well and should recover, Marty Butler said. The switch to San Diego, both Marty and Darling said, saved Richard Butler's life.

Darling, a former transplant patient himself, said transplant hospitals in more crowded regions have to compete with more patients for available organs, making those on their lists wait longer.

"We do have a lot of demand here," said Stephanie Schmitz, a spokesperson for OneLegacy, a transplant center serving several counties, including Riverside. "When you look at the population, it's huge."

Darling chooses his words carefully.

He doesn't want to upset local doctors, but he's also "distressed at the large number of patients in our group who were told by valley physicians that death was inevitable with no possibility of a transplant."

***

FAIR Editor note: to help reverse America's organ donor crisis, we urge you to support the effort for new organ procurement policies. Click here to do that.

Alex City, Alabama

Dentists from all over step up to help woman battling liver disease

By Kelly Caldwell

Julie Smith continues battling end-stage liver disease, but thanks to the help from people in California, Georgia and here, the fight goes on.

She was diagnosed with end-stage liver disease after contracting Hepatitis C through a blood transfusion in 1988.

Because of the medications she has to take to battle the disease, Smith developed periodontal disease and had to have her teeth removed to prevent further infection.

"You can't have any infection in your body when you have a liver transplant," she said.

Through the Internet, Smith met Dr. Richard Darling, a dentist in California who also suffers from Hepatitis C. Darling connected with Smith on a personal level and decided to do everything he could to help her.

"Her case has really touched me," he said. "For a woman as young as she is to be battling for her life is very unfortunate. I know what she has been through and I wanted to help."

Darling contacted Global Dental Solutions out of Atlanta to join the cause.

"Dr. Darling contacted us and told my company about Julie's situation," Hal Abramson, vice-president of sales for Global Dental Solutions, said. "We agreed to give Julie new teeth, but we needed to find a local dentist to help."

Darling began searching for a local dentist and that's when he found Dr. George Hardy.

"It has been a joy to meet her and do this service," Hardy said. "It makes me and my dental team feel great being able to help someone."

Smith received her new teeth more than a week ago.

"I am still trying to get used to them," she said. "I haven't had teeth in over a year, so it's different having them back."

As far as her health, Smith continues to fight the complications of end-stage liver disease, but still does not have enough money for a liver transplant, which she desperately needs.

"We are still trying to raise money for her," Darling said. "Hopefully the more people that know about her situation, the more people will be willing to help."

There is an account set up at SouthTrust Bank for people wanting to contribute to her cause and Smith also has a Web site (www.geocities.com/save_julie/) where people can make donations.

"We are continuing to get the word out about Julie," Darling said. "We have gone to national media and because of the donations made by Dr. Hardy and Global Dental Solutions, the American Dental Association is working on a story about Julie."

UPDATE: Julie Smith passed away without ever receiving a liver. America's reliance on the sole policy of "altruism" has created an organ-donor crisis with almost 100,000 patients waiting for an organ and one, like Julie, dies every hour due to the shortage created by relying on altruism. Julie supported FAIR's national effort for new organ-donor policies, will you? Click here to input to your politicians the urgent need for new organ-donor policies using just your zip code + copy and paste our prepared letter.