Woman’s Hope Is Alive Despite Fatal Disease

At age 26, with a husband and two daughters, Monica Fisogni should be enjoying life.

Instead, Fisogni sits at home in Baldwin Park with barely enough energy to watch television. She is unable to drive, and on the rare occasions when she leaves her house, she must use a wheelchair. She showers while sitting in a chair because she doesn’t have the strength to stand. Some days she doesn’t get out of bed.

A rare lung and heart ailment is killing her. “Sometimes I think: ‘This is my last day.’ And I get mad,” she said as she sat in her living room. “Sometimes I think: ‘I may get lucky.’ ”

Clear plastic tubing feeds her oxygen from a tank 24 hours a day. As she spoke about her condition, the air made a whooshing sound, rushing through tubes inserted in her nostrils. Her two children, Valeria, 6, and Andrea, 3, played on another sofa nearby.

“I have a little cross, and every time I’ve been scared I’ve held onto it,” Fisogni says. “If I watch a sad movie and the person ends up dying . . . I (think) the same thing will happen to me.”

Fisogni suffers from a condition known as pulmonary hypertension. Abnormal blood clotting builds pressure in the lungs, resulting in the lung pushing against the heart and damaging it, too. The cause is unknown, but the affliction tends to affect young women more than any other group.

For Fisogni, the only cure is removal of her damaged heart and lungs, replacing them with healthy organs from someone who has just died.

Fisogni’s condition has traumatized both her and her large, extended family, many of whom, like herself, moved to the San Gabriel Valley from the Argentine community of Rosario.

She first came to America with her mother and two sisters in November, 1965, three months after her father, then a welder, arrived in Pasadena with $5 in his pocket and a suitcase full of clothes. The family found jobs and a measure of working-class prosperity, returning to Argentina once for a four-year period. In 1981, Fisogni returned to the San Gabriel Valley with her new husband, Enrique Fisogni, who drives for a freight trucking firm.

Fisogni’s health had always been good and she watched her weight. Never a smoker, she frequently chastised her older sister, Liliana Scaturchio of Arcadia, for smoking.

But last fall Monica began to notice that something was wrong with her health. Often she felt tired. Sometimes her chest hurt.

Once, as she was driving home from El Monte, where she worked part time at a bank, her left arm ached so much that she felt she could no longer hold the steering wheel and for an instant she could not see. Pulling over, she regained her sight and continued home.

Trying to find out what was wrong, she made several trips to doctors and underwent tests, but nothing indicated she had anything more serious than arm aches, which one doctor said likely stemmed from muscle spasms.

On Christmas Eve, following the tradition of many Argentine families, Fisogni and the other women prepared dinner. As Fisogni made cannelloni for the 40 guests who squeezed into her home, she noticed her arm hurt. The next morning she could not get out of bed. She was exhausted and felt dizzy and faint when she tried to move.

Her sister, Scaturchio, and Fisogni’s husband took her to Kaiser Permanente’s facility in Los Angeles. There she underwent two electrocardiograms. Worried that the tests might not indicate the severity of condition, she jogged in place as she rode in an elevator between tests.

The next day, she was admitted to the hospital where she remained for about two weeks. The electrocardiograms along with subsequent tests made clear what her difficulty was.

Her illness, she says, has torn her family apart. They no longer gather on Sundays at the Monrovia house of her parents, Elida and Marciano Rodriguez. Because she was so distracted by her daughter’s illness, Elida Rodriguez sold her El Monte business, Lita’s Bridal Shop.

Fisogni says her children do not really understand what is happening.

In moments of despair, she has told her sister she felt like killing herself. “She’s numb. It’s harder for me to talk about it than it is for her,” Scaturchio said, her voice breaking. “She says it’s the same thing as if her legs had been cut off.”

Fisogni says, though, she is the type of person who would rather hear a joke than a sad story. “I was like the airhead of the bank.”

But the only thing she finds humorous in her situation, she says, is the oxygen tubing that sometimes entangles her. “I feel like a dog being pulled on a leash,” she says with a laugh.

In January, doctors gave Fisogni six months to a year to live, if she doesn’t undergo a transplant.

Tentative plans, according to her physician, Dr. Amar Kapoor of Kaiser Permanente, call for the operation to be done by UCLA Medical Center’s Dr. Hillel Laks. The operation, Kapoor said, would be the first of its kind for the medical center, which often does heart transplants.

Close to 300 heart-lung transplants have been performed worldwide, according to Kapoor, Kaiser Permanente’s medical director for heart transplants.

A heart-lung transplant is considered successful, Kapoor said, if the patient lives one year after the operation. The success rate is 50%.

A major difficulty is finding a suitable donor. The blood and tissue type must match. Also, in Fisogni’s case, the donor should preferably be female, between the ages of 16 to 36 and have a build similar to her 5-foot frame.

The best donor candidate is someone who has died of a head injury that did not damage the heart or lungs. Because the lengthy operation must be done as soon as possible after the donor dies, Fisogni has a beeper to alert her when she should report for the operation.

Although the issues of legal guardianship have been resolved about who, besides her husband, would help take care of her children in the event of her death, Fisogni has ignored those who have advised her to write a will. To write a will, she says, is to accept defeat.

Her fantasy is that she will undergo a successful transplant and live to see her children grow up.

“Sometimes I say: Maybe with patience I’ll get something out of all this.”

In her daughter’s kitchen, Elida Rodriguez cuddled a kitten in her hands. She spoke above the kitten’s high-pitched meowing. From the next room came the murmuring sound of the machine supplying Fisogni with oxygen.

“You hear she has six, eight, nine months (to live). . . . This is no good. . . . This I no like,” the mother said, pausing as she began to cry. “Only God gives you the time, not the doctors.”