Sarcoidosis Sufferer On Organ-Donor Waiting List For Set Of Lungs

By Elizabeth Rodriguez

Staff Writer

February 15, 2004

Patricia Vidal couldn't understand why her cough would not go away.

For almost a year, the Santa Maria resident said, she visited six doctors who would give her cough medicine and send her home. One doctor said she had bronchitis. Another one told her it was in her mind.

It took a simple chest X-ray to show that she had a chronic disease called sarcoidosis. Now almost five years later, she has become a virtual prisoner of her own body and needs a transplant for both of her lungs.

Sarcoidosis causes inflammation of tissues in almost any organ in the body, but it predominantly affects the lungs, said lung specialist Dr. Mudit Dabral, who has been treating Vidal since she was diagnosed in 1999.

There is no known cause for the disease, Dabral said, but there is a theory that some kind of infection might trigger it.

Treatment usually includes taking corticosteroid drugs, or even cancer medications, to ease symptoms, he added. Typically, the disease affects women -- mainly African American women -- between the ages of 20 and 50.

Symptoms vary in severity, he said. Mild cases can cause shortness of breath and coughing, while severe cases can lead to scarring in the lungs.

For the most part, patients with sarcoidosis can go about their daily lives as usual, and in fact symptoms tend to disappear on their own, but severe cases can require lung transplants.

Vidal's case is severe.

The scar tissue that has formed around the oxygen-absorbing air pockets in her lungs makes it difficult for her body to take in oxygen, regardless of how fast she breathes, the doctor said. The lack of oxygen can affect other organs in her body, and even something as simple as standing up, picking up something and sitting back down make her lose her breath.

"Sometimes I tell God, I am grateful if he chose me for this illness," the 28-year-old Santa Maria woman said. "I'd rather it be me than one of my relatives."

Vidal is on an organ-donor waiting list at USC Medical Center, and when a set of lungs becomes available she will have to live in Los Angeles for at least three months after the surgery.

With sponsorship help from the Veterans of Foreign Wars Post 570, her family is having a barbecue fund-raiser from 11 a.m. to 4 p.m. Sunday, Feb. 22, to help with costs of the anticipated surgery. It will be held at the Vons parking lot on 729 North H St.

Donations can also be made to "Patricia's Fundraiser" at Coast Hills Federal Credit Union.

Vidal was studying at Allan Hancock College and working two jobs when she was diagnosed in 1999, she said. The coughing interfered with her life, but since the doctors couldn't find anything wrong with her, she went on about her daily business -- she just kept drinking cough syrup.

It wasn't until a month before she was diagnosed that a freeway accident gave her a new lease on life, she said. She decided to visit another doctor and insist that he find what was wrong with her, she said.

By the time her illness was discovered and she was sent to Dabral, she already had heavy scarring in her lungs. In addition, the money she had been saving to buy a house was spent on all her doctor visits, even though she was covered by the state's Medi-Cal insurance program, she said.

"I was so relieved that someone finally found something, on the other hand so sad," she said.

Her condition has forced her to stop going to work and school. She rarely even goes outside because it is too difficult, she said, especially when the air is cold.

Her condition varies from day to day: Sometimes she feels very fatigued, her body aches, she gets headaches, has difficulty concentrating, gets dizziness and nausea, among other symptoms. To make things worse, she said, the medications she has to take have unpleasant side effects. She spends most of her day sitting alone, either watching television or doing an activity that will not cause much exertion.

To aid in her breathing she has to wear an oxygen mask at all times. The air tubes extend the length of her house and are connected to an oxygen pump that endlessly whirs and puffs in the background.

Two years after being diagnosed she married the man who has been with her ever since, Everardo Buenrostro. On her wedding day she walked down the aisle without her oxygen mask, said her mother, Rosa Vidal. It was excruciating to take those steps, she said, but she mustered all her strength.

"I suffered, but it was something I had dreamed of. I wasn't going to let it go," Vidal said.

Her mother has moved in with her daughter and her husband to help around the house when Buenrostro goes to work. On days when Vidal's symptoms are particularly bad, her mother has to help her even bathe and groom herself.

"I wish I could take her illness," Vidal's mother said in Spanish. "I lived my life. It's terrible to see your young suffer."

When Vidal was told that her only option was to have a lung transplant, a year after being diagnosed, she and her husband did not want to face reality, she said. She kept postponing the decision to proceed with the transplant.

"We were fooling ourselves," she said.

But the support of her family made her realize she wanted to keep on living, she added, and she has been on the waiting list since November. She is on-call at all times in case a set of lungs becomes available.

Her blood type and body size are common, so it should be easier to find a donor than for some recipients, Dabral said. The average wait is 11 to 19 months, he said, and Vidal should be all right for the duration because she has a strong heart.

She has to take care not to get a lung infection though, even one that an otherwise healthy person could fight off, because it could be life-threatening, he said.

Once she has the surgery, Vidal will have to stay in Los Angeles at least three months for observation, Dabral said. She won't need to stay in the hospital after the initial recovery period, but she has to be within a short driving distance from the hospital in case there are any complications. In addition, she will have to be checked at the hospital twice a week. After the three months she will have to return to Los Angeles at least once a month for additional doctor visits.

Next weekend's barbecue is being held to raise money for food and lodging during that stay down south -- or for funeral costs if she doesn't survive, she said.

Her husband, a maintenance worker at Vandenberg Air Force Base, will be staying with her and will be unable to work, so they will have no income for that period.

Vidal said she is afraid of what might happen to her, whether an organ donor will be found in time or whether she will survive the surgery. She feels that she is playing roulette with her life, she said. However, she is putting her fate in the hands of God.

"I have a lot of dreams, but the biggest wish is that God will help me through this so that I can be with my family, without problems, happy," she said.

Staff writer Elizabeth Rodriguez can be reached at 347-4580 or by e-mail at erodriguez@pulitzer.net.

Copyright © 2001 Pulitzer Central Coast Newspapers.

This article posted March 13, 2004.