Committed to Community – The Transplant Network

By Catherine Atkins, Reno News & Review
Reprint courtesy of Reno News & Review

August 3, 2000

Debbie Pinjuv grows nearly giddy when she tells the story of getting the call that saved her life.

In 1993, as she finished her last semester at the University of Nevada, Reno, before walking away with a master’s degree in counseling, she applied for life insurance. She felt healthy, so when the insurance company denied her application because she was “high risk” and told her to call a physician, she did right away.

Her life changed when she was diagnosed with a fatal liver disease, Primary Biliary Cirrhosis, which is a slow, chronic disease of the liver that destroys the bile ducts with the liver. Her only hope was a liver transplant.

Ironically, Pinjuv’s specialty as a counselor is helping patients who suffer from catastrophic illness. After graduate school, she worked with breast cancer patients; as she became sicker with her own life-threatening illness, Pinjuv began working with transplant patients.

Since 1997, Pinjuv has been running The Transplant Network, an organization that strives to raise awareness and educate people about organ and tissue donation, as well as improve the quality of lives of transplant candidates, recipients, and their families. The Transplant Network offers monthly liver-transplant support groups, publishes a monthly newsletter, provides speakers for educational purposes, and participates in health fairs. Additionally, they maintain a website for people interested in donation and transplantation:

Pinjuv says that since organ transplants are not done in our area, most of the support is out of state. In fact, when she was diagnosed, she wished for a group exactly like the one she created.

Pinjuv says four of the group’s current 35 members suffer from the same disease she had; the majority have hepatitis C. She says the group grows by about one a month due to hepatitis C, which is a deadly virus that infects an estimated 3.5 million Americans, with 150,000-170,000 new cases diagnosed in the United States each year and millions more worldwide.

The organization, which became an official nonprofit this past January, attempts to dispel the myths that surround transplantation. One major facet of TTN is its affiliation with The Living Bank, the oldest and largest donor education organization in the country. When one registers with The Transplant Network in Reno, it then forwards the information to the national register of The Living Bank.

The Living Bank, based in Houston, believes that no one should die or suffer for lack of a donation. Pinjuv concurs. “The critical focus for The [Transplant] Network comes because of the organ donor shortage,” she says. “We’ve seen many of our patients die while waiting and it’s so unnecessary. Our complete focus is to educate the public to say ‘Yes’ to donations. We’re out there giving speeches. We go to the hospitals, health fairs, schools. A lot of people, if they say ‘No’ in that crisis situation when a loved one is at or near death, it’s strictly because they’re uneducated. So, we’re trying to get to all these people before that situation, God forbid, would happen.”

Pinjuv is excited about two laws passed last year in Nevada regarding organ donation, both of which guarantee donation. She believes most people think having the tiny words “Organ Donor” on one’s driver’s license is enough to guarantee final wishes. Nevada is only one of four states with a law saying one’s wishes to have his or her organs donated must be honored.

The second law pertains to directed donation; that is, either promising that one’s organs will be given to a specific individual (if possible) or at least to someone in Nevada (if possible).

Pinjuv says this is critically important because time is of the essence. While kidney transplants may be the most common, the need for donations ranges from middle ears to corneas to veins, cartilage and tendons.

“Our main focus is to educate everybody that these laws have passed; please respect them,” says Pinjuv.

Pinjuv lived nearly seven years growing progressively worse. In the six months before her transplant, she began to suffer horribly. Her muscles had atrophied; her joints ached with arthritis; she had very little energy.

Before she got the phone call that the years of waiting on the transplant list had ended, her condition became critical. “During the last three-four weeks, I was failing really fast,” she says. “In the nick of time, I got that phone call. [My husband and our sons] were just starting a movie and the phone rang at 7:45. I was so sick-couldn’t talk, couldn’t walk-but as soon as I got that phone call, I was running around, making phone calls and packing.

“They had a helicopter ambulance for me, but it could only hold me and my husband; my boys would have to drive separately. We didn’t want to separate, so we drove together. It was the best, the best.”

Everything went smoothly during the transplant.

“I woke up from my transplant, and I felt alive,” she says. “I went to sleep dying and woke up alive. It was the happiest day of my life. I thought, it does hurt, but I don’t care. Twenty-four hours after my transplant, I was standing up. Before that I could hardly stand up.

“I remain [my doctor’s] poster child because everything went as they wish every transplant would go.

“[My doctors] told me [the donor] was a teenaged boy. I call him my little angel because he watches over me. He comes to me in my dreams and everything. I am eternally grateful to his family.”

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