The Willow Glen Resident

Photograph by Skye Dunlap

Brave Fight: 'I'd like to live through March,' says Cici Barone, who is waiting for a lung transplant, as her sister, Ann Giluso, holds her hand.

Family leads fight to inform people about organ donation

As her sister struggles with lung illness, Glen woman heads campaign

By Michelle Ku

Cici Barone struggles for her life every day. The simple act of breathing is taken for granted by most people, but Barone, 35, longs for the day when she can breathe again without the aid of intravenous liquid oxygen. Since April, Barone has been receiving liquid oxygen 24 hours a day. Without it, she would die.

Yet Barone's life can be changed easily with a lung transplant. And Barone and her sister, Ann Giluso, both Presentation High School graduates who grew up in Willow Glen, hope to increase Barone's chances--and the chances of others--of living by heightening organ- and tissue-donor awareness. When one life ends, the opportunity for another one begins through donations.

Posters with the message "April is Donor Awareness Month...but April could be too late for those who want to live in March! Give a gift for life" are appearing on telephone poles and in businesses, schools and churches from Willow Glen to Capitola and Morgan Hill--wherever the sisters' friends and family have connections.

Two weeks ago, Giluso and her sister decided to begin fighting for Barone's life by increasing donor awareness. Barone suffers from interstitial pneumonitis, a rare condition of fast-progressing pulmonary fibrosis.

"I was laying [in bed] one morning when I said, I feel so helpless just laying here and not being able to do anything to use some of my energy, anger and frustration," Barone says. "If I could, I would be out there making people aware."

Becoming an organ or tissue donor is simple. All donors have to do is make sure that their family or next of kin knows their wishes and sign or have an organ donor card in their possession, Giluso says. It's important that the family knows the donor's wishes, because if not, the family sometimes decides not to allow organs and tissues to be used in transplants.

Many people decide not to donate because of religious issues and the idea of desecrating the body--the temple. "The way I look at it is this," says Jeff Barone, Cici's husband. "Do I want worms crawling through my body for the next 100 years, or do I want my organs to help someone else? The body is just a shell. I'd rather help someone else."

Increasing awareness about donations could help save Barone's life--as well as the lives of the estimated 55,000 people on the National Organ Transplant Waiting List. Up to 10 percent of the people on the list die as they wait for a donor.

"We wouldn't have been aware if this hadn't happened to us," says Peggy Scapini, Barone's mother, as she reached over to help her daughter with the oxygen. "None of us paid much attention to it before. It's made us more aware."

Barone was placed on the lung-donor recipient list at Stanford Hospital in June but is fearful a donor will not be found in time because her condition is deteriorating.

"I'd like to live through March," Barone says, as she gasps for air and turns up the pressure on the liquid oxygen.

Barone's condition requires 24-hour care and to provide that, Giluso last April organized a "Share the Care" group to help care for someone who is seriously or terminally ill. She based the group on the one outlined in Cappy Caposella and Sheila Warnock's Share the Care book.

The group works on a weekly rotating schedule of "captains," "co-captains" and "free-floaters." Each week, a designated captain and co-captain contact the Barone family and organize the free-floaters to fill in where Barone needs help.

Besides acting as helping hands and supporters for Barone and her family, the Share the Care group works as a support group for themselves as caregivers, teaches them how to care for themselves and their families and helps them deal emotionally with the seriously ill.

"We really didn't utilize the group much until two or three months ago," Jeff Barone says. "The last couple of months the group is functioning more efficiently. ...It's allowed me to continue to work."

Since she's been on the list at Stanford, Barone has received only one call. On Nov. 1 she got a call that a donor had been found, but the donor's lung turned out to be unsuitable. The donor had recently been in South America, and the doctors found a parasite in the blood.

When Barone received the call in November, she was still strong and healthy. She was able to walk around the house and run errands with small containers of liquid oxygen, but her condition has declined to the point where she has not left the house since Christmas and is almost bedridden.

"She's fearfully facing not getting the call and fearfully facing getting to Stanford and being told she's not strong enough for surgery," Giluso says.

Until the call that a donor has been found comes, Barone is just taking life one day at a time.

"I'm a young woman with two young children [ 6-year-old Wesley and 8-year-old Austin]," Barone says. "I have a lot of life to live, and I want to live it. I'm just waiting for the generosity of another family."

The DMV and organizations such as United Network Organ Sharing (UNOS) have informational packets about organ and tissue donation, as well as organ donor cards. For information about donating organs and tissues, contact UNOS at 1-800-243-6667.

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