Those needing liver transplants find tough, long wait

By Barbara Anderson
Reno Gazette-Journal

June 14, 1998

 

Debbie Pinjuv, 42, of Reno has been waiting a year and a half for a liver to save her life.  Paul Saucedo, 57, of Carson City waited more than three years for a transplant that gave him new life.

The waiting — an average of 3 1/2 years — for northern Nevadans on liver transplant lists, causes a pain of its own, said Pinjuv and Saucedo, leaders of two liver transplant support groups.

The liver is a large, vascular glandular organ that secretes bile and causes important changes in substances in the blood, such as converting sugars into glycogen, which it stores until required.

“You don’t know what to pray for,” Pinjuv said. “You don’t want to pray to get sick, but . . .”

To be placed on a waiting list for a liver, patients have to be in a medically fragile condition.  Doctors call in the information to the United Network for Organ Sharing, the agency designated by the federal government to oversee donations of nearly all organs.  Liver donations are a hot topic between those who want recipients to be chosen from the donor’s region and those who want the sickest patient to receive it, regardless of location.

“I think that’s the toughest part, knowing they’re almost going to die before they can have a chance to live,” said Virginia Reese, who coordinates the organ donor program in Reno for the California Transplant Donor Network.

As of Jan. 26, 1,433 northern Nevadans and northern Californians were waiting for livers, Reese said.   Only the numbers of people needing kidney transplants — 3,308 — surpasses those needing livers.

When Pinjuv ‘s health deteriorated at the beginning of last year, she tried to get on a second transplant list.

She hoped to speed up the process.  She’d been put on a transplant list at another California hospital in November 1996 but was told a liver would take 18 months.

The second transplant list rejected her.

“They examined me and told me I was at high risk for hemorrhaging,” she said. “But they turned around and said, “You’re too healthy, and we’re not even going to list you.”

The doctor said it would be unethical to give her a liver.  Others were in greater need.

Pinjuv was diagnosed with primary biliary cirrhosis of the liver in 1992.  Doctors don’t know what caused her liver to attack itself, but the auto-immune response has turned her skin a dark bronze and destroyed her health.

Pinjuv never knows what symptoms will disrupt her life each day.  One of the worst times is when ammonia, which builds up in the bodies of people with liver disease, causes confusion.

Pinjuv has been at a checkout counter and been unable to count change.  She’s foud herself lost in a store.  She’s started to write a sentence and been unable to scribble.

Her health has improved so she can play with her pet goats and Dalmations.  But she takes $1,000 worth of pills each month to maintain her condition.

“I don’t know what to pray for right now,” she said.  “You don’t want them to say you’re doing good, but you don’t want to hemorrhage or get where you can’t think.”

Saucedo, a retired state transportation engineer, in convinced he would have died if he had had to wait another month for his liver.

“I was about as sick as you could get,” he said.

He’d been given four years to live after learning in 1989 that hepatitis C was destroying his liver.  He thinks he’s had the disease since he was a teenager and that it was acquired through a blood transfusion.  Until 1990, blood banks did not screen for the hepatitis C virus.

He was put on the transplant list three years after being told he had only four to live.  Another 18 months passed before he got a liver on Feb. 3, 1995.

“It tears you down physically and psychologically,” Saucedo said of the time between being placed on the list and receiving his liver.

“At one point, I did think about suicide,” he said.

That’s why he started a liver transplant support group in Carson City in September 1995.

“When I was told I had to have a transplant, there was nothing —  no support — for myself or my wife,” he said.

Pinjuv thought about starting a support group, but she wanted to wait until after she received a liver.  Doctors told her she’d better not wait.

Pinjuv, a marriage and family therapist, took the doctor’s advice and started the Reno Liver Transplant Support Group.

“I know why this happened to me now,”  she said.  “It keeps me healthy because I have this passion to help these people.”

Saucedo agreed.

“The Big Guy in the sky gave me this mission,” he said.

But helping people who are scared and ill isn’t easy.

“It hurts to hear how sick they’re getting,” Saucedo said.  “It brings back memories.”

In the almost three years since he started the support group, two people have died waiting for transplants and one person died after receiving a liver.

Pinjuv, who was counseling people with catastrophic illnesses when she was diagnosed with liver disease, also had people die.

“I feel I have a lot of angels in heaven looking after me,” she said.

She knows some in the support group will die awaiting transplants.  She and her support group members are learning to accept their conditions.

“You can see the growth and the peacefulness that develops with the acceptance,” she said.

Saucedo wants those waiting for transplants to know hope exists, and that the operation is life-changing.

“I am a healthy old boy, and I’m having a great time,” he said.

Receiving his new liver was “like going back to the womb again and being born as a 53-year-old man,” he said.

He celebrates two birthdays now:  Feb. 3 — the day he received his liver — and May 18, the day he was born.

 

 

 

 

 

 

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