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 119,000+ 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 58 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 FAIR Foundation 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: 760-200-2766.
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's FAIR Foundation Liver 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 support group has been changed from the Coachella Valley Hepatitis C, Liver Disease & Transplant Support Group to the FAIR Foundation Liver Disease & Transplant Support Group which is a sub-division of the FAIR Foundation. 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]

                                                                                    
***


 

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."

***

Group helps transplant patients through ordeal

Patients who’ve been there provide support, information

Written by Blake Herzog
04/08/11

Joe Bartfay II is living at his parents' home in Fountain Valley while he recovers from a liver transplant and tries to restart his career as a computer software engineer. 

But he makes the trip to his parents' winter home in Palm Desert the first Monday of every month to reconnect to the support group that helped him through the ordeal. 

His operation was a year ago March 25, but he goes back to the group so he can be a resource for others who may face a years-long wait for a new liver after theirs has been ravaged by cancer, cirrhosis, hepatitis C or other diseases. 

“It was a great help before the actual operation, and now I continue to attend because I know there are people in the group who are going through what I did, and I can give them hope of recovery,” he said. 

Dr. Richard Darling of Palm Desert is a dentist, but he's had a lifetime of education in liver transplants, having undergone three himself. 

Now much of his time is devoted to helping others facing liver failure through the support group, offered through his Fair Allocations in Research Foundation. 

Patients also help each other, Darling said. “When you go to a doctor they only have X amount of time to speak to you, which is understandable, but you have a million questions,” he said.

Around 15 to 25 patients, family members and caregivers attend each meeting, he said, where he, co-moderator Jack Burke and guest speakers offer information and encouragement. 

Patients also help each other. “When you have end-stage liver disease you can just start itching really badly, all over,” Darling said. “One time there was a patient who said, ‘When I was sick, I used to itch a lot,' and someone else said, ‘Oh, I've been itching a lot lately. You mean that's normal?'” 

Bartfay, 39, started going to the group after his parents saw a flier for it, and he'd already read about Darling online. 

He said he can only vaguely remember his first meeting because he was in so much pain, as cirrhosis was bloating his abdomen with fluid buildup while the rest of his body was skeletal.

He was in the process of trying to get onto a transplant list in the Los Angeles area, but Darling sent him to Scripps Green Hospital in La Jolla, where the sickest patients can get a new organ within weeks. 

This is what happened for Bartfay, who now hopes he can help draw others like him into the support group. 

“I want to convince other people to come if they can. They may be seeing a doctor that's telling you, ‘You don't have any options, go to hospice.'” 

What: FAIR Foundation Liver Disease and Transplant Support Group
Where: Portola Community Center, 45480 Portola Ave., Palm Desert
Cost: Free
Information: (760) 200-2766 or http://fairfoundation.org/support_group.htm

Blake Herzog covers Palm Desert and Rancho Mirage for The Desert Sun, and can be reached at (760) 778-4757 or blake.herzog@thedesertsun.com.

***

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.

***

Doctor driven by his chance at life

Survival after 3 liver transplants, coma inspires him to help others

By Brian Joseph
The Desert Sun, Palm Springs, CA
September 2, 2003

Dr. Richard Darling likes to visit his grave. The headstone etched with his name is a monument to the hope he preaches.

"I never want to forget where I’ve been or what I’ve been through so I can take care of these patients," he said. "This is what drives me."

The dentist from Palm Desert was supposed to have died years ago, but through the grace of God -- and three liver transplants -- he’s survived.

He’s grateful for the second chance. And to show it, he’s become an advocate and a friend for patients with liver disease:

  • He wrote a book about his experiences in a coma.
     
  • He founded a support group for patients suffering with Hepatitis C or who are in need of a liver transplant.
     
  • He formed a group lobbying to change the way medical research is funded.

    In August, the National Association of Social Workers named Darling, 56, the 2003 National Public Citizen of the Year.

    He said he hopes to use his fame to teach others about the importance of being an organ donor.

    "He’s just such an inspiration," said 37-year-old Brian van der Wees. Darling helped van der Wees get on a waiting list for a liver when van der Wees was close to dying from cirrhosis of the liver.

    "Without him I wouldn’t be alive today," van der Wees said. "… I just love the man."

    About 30 years ago, when he was still in dental school, a bloody car accident put Darling in the hospital. With his legs hemorrhaging and his blood pressure dropping, doctors gave him a transfusion. The blood was tainted with Hepatitis C, Darling said.

    "That was before there was a test for Hepatitis C," he said. "In fact, in those days, it wasn’t called Hepatitis C. It was called Non-A, Non-B."

    But he didn’t know about all that at the time. It wasn’t until the early 1990s when he was diagnosed with Hepatitis C. His condition worsened: Hepatitis C begot cirrhosis of the liver. Cirrhosis led to cancer.

    By 1998, he was too weak to continue dentistry. The only available treatment wasn’t working, and the federal government forbid cancer patients to receive transplants, so he retired and prepared to die. He bought a plot and a gravestone in anticipation.

    Then the government changed the rules and a donor liver became available. He had his first transplant in October 1998. The liver lasted him about a week.

    The liver failing, Darling slipped into a coma.

    "I remember (my wife) telling me, ‘We’re going to get you through this,’ " Darling said. "Then I slipped away into the life inside my coma."

    A second liver transplant brought him out of the coma. That liver lasted about three years. In 2001, he had a third transplant. He’s been healthy, and cancer free ever since.

    Darling later wrote a book about his experiences inside his coma called "ComaLife: What the Hell is Going on Here." In it he tells of the things real and imagined he saw: a "guardian angel" tabby cat curled on the edge of his bed, the nurses and doctors in his hospital room, Dennis Rodman.

    "My life in a coma was a non-sensory place," Darling said. "I had no pain. I had no stress. That was one of the reasons I wrote ‘ComaLife,’ to educate families that we are OK in our coma."

    His odyssey has made him an expert on the plight of patients.

    Last year he founded a group that’s lobbying the National of Institutes of Health to distribute research funds more equally among diseases.

    Called The FAIR Foundation, its mission is to have a disease's mortality rate given emphasis when determining allocations, and then other factors will insure that diseases that kill few but cause great suffering will also receive increased funding. "FAIR" is an acronym for "Fair Allocations in Research." Darling says AIDS receives the most funds but doesn’t kill the most Americans. Heart disease does.

    Today, he spends his days counseling liver disease patients. He formed the Coachella Valley Hepatitis C, Liver Disease and Transplant Support Group, where area residents gather twice monthly to talk about their health and ask Darling questions about medical tests, procedures or where to find good doctors.

    "He’s been through it all, so he knows what he’s talking about," said 43-year-old Edna Rodriguez, who’s had Hepatitis C for 15 years. She’s only attended two group sessions, but she says she’s hooked.

    "I really enjoyed listening to him talk," she said. "You see how close he is to the others. He really cares."

    Once or twice a week, Darling dispenses "hope" while touring the transplant ward at Loma Linda University Medical Center, where he tells patients the importance of staying optimistic.

    He said: "The mantra is, ‘If Dr. Darling did it, so can I.’"
  • ***


     


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