Earlier this year, Jennifer Nanna came to a sudden revelation: She wanted to live.
“I’m tired of being in an environment where people think death is okay or expected,” she wrote in a recent on-line journal entry. “We all expect death, waiting for the next patient to die. I won’t be that next patient, and I hope for the sake of my friends that they get a second chance as well.”
The 24-year-old Nanna, who was born with cystic fibrosis, was added to a list for a double lung transplant in June.
“For as long as I can remember I have lived a sort of twisted double life,” she recalled in her journal. “Since the age of 7, I have averaged two to 10 hospital stays in a year.”
While living at home in Bayonne, she went to school, associated with other teens at parties, hung out at the mall, and had the typical interest in music and boys. The hospital staff and other patients became her family. Many, if not most, of the friends she made over the years have CF, and this year she has seen many of them die, some younger than she is.
CF is an incurable disease that can affect the pancreas, intestinal glands, sweat glands, and bronchial glands. The attack on the lungs is the most deadly. Although advances in science have helped increase the maximum life expectancy from eight years to 30 over the last few decades, the average age of a CF death is about 21.
“People with this disease have thick mucus, which breeds infections in the lungs, and the disease also makes it difficult to digest their food,” said John Freeman, who is involved in a group that is seeking to raise the $65,000 that will cover Jenna’s transplant-related expense and post transplant care.
Nanna did things most people do
Freeman recalled that when Nanna was 12, she still managed to play sports such as soccer – though the disease tended to steal her breath. He said she didn’t complain and wouldn’t quit, though coaches were concerned about her continuous coughing.
Nanna has exceeded not only doctors’ expectations for her length of life, but many people’s belief in what she could accomplish. She managed to become a registered nurse despite her disease.
During her time in the hospital as a patient, she often spent a lot of time with younger people suffering the same disease, and was inspired to become a nurse because of a doctor who cared for her from 1987 to 1997.
“Unfortunately, he died of CF waiting for a transplant,” she said
Over the last two years, Nanna’s health has declined.
“I can’t do many of the things I used to do,” she said. “I can’t work, although I’ve always managed to go to school.”
She came close to dying late last year, but is holding on, with hopes that a set of lungs might be found for her.
A transplant will make all the difference
In June, Nanna was accepted into the University of Pennsylvania’s lung transplant program. Her size and height actually improves her chances of getting a transplant sooner than the usual year-and-a-half to two-year waiting period. Nanna is so petite that a 5-year-old once mistook her for 12.
“Encounters like that are a normal happening for me,” she wrote in her journal. “I am a thin, 5-foot-6 inch woman. I seldom wear makeup, and when I do its pretty minimal.”
In her journal she has struggled with the implications that someone else has to die so that she can live.
“I could think about all that goes into this,” she wrote, “the fact that I will have someone else’s lungs in me – breathing for me – breathing normally for me.”
The social worker at the hospital said Nanna will likely have to fly when the time comes, because Bayonne is a two hours’ drive away from the University of Pennsylvania Hospital.
Raising funds
Her parents have asked for the assistance of the Children’s Organ Transplant Association, which is a national organization that helps organize and guide families in raising funds for children’s transplants, with 100 percent of the money raised going to the patient’s needs.
Nanna, during a telephone interview last week, said everything changes when she gets the transplant. Because the new lungs will have a different DNA, she will no longer have the disease in her lungs.
“I’ll still have it in my other organs,” she said, “but those can be managed.”
She suffers, for instance, from diabetes, and takes insulin injections.
Nanna said the ability to breathe will allow her to go back to work, and she said she wants to continue nursing in the pediatric field.
In one journal entry, she wrote that she always had big dreams, and believes the transplant will allow her to pursue them.
“Perhaps I see the transplant as my only ticket out,” she wrote. “I don’t want to be someone else’s bedside goodbye. I want to live and pursue my dreams.”
Has helped other people
Even with her disease, Nanna has managed to help other people over the years. She doesn’t completely know why she gets involved various projects, although it may be an effort to give back to the community which has helped her since birth.
“I don’t know why I do it,” Nanna said during a telephone interview last week. “I just do it. People have been good to me.”
When she was 8, she collected toys for kids at the hospital around Christmas time. At age 11, she worked with an organization helping the homeless. At 12, she raised money for Muscular Dystrophy and spent her Saturdays volunteering at a Cancer Care Store.
In high school, she did volunteer work for Hudson Cradle, a home for infants with HIV or drug exposure. She also sponsored a child in Ecuador through Children International.
In 1997, she founded a local chapter of Project Linus, which promoted the making of blankets for hospitalized kids, and after the Sept. 11 attack, managed the creation more than 2,000 blankets for children who lost parents in the World Trade Center. “I was inspired by Jenna the first time
that I spoke to her,” said Richard Dwyer of PSE&G. “In my conversations with her, she never talked about resignation and resentment. She always spoke about making things better for children in need.”
Now her friends want to help her, and they have organized a fund-raising effort to help Nanna cope with the costs of the transplant.
People can donate in numerous ways. Donations are tax deductible and can be made at any Wachovia Bank branch location using a special account number or mailed to Children’s Organ Transplant Association, 2501 Cota Drive, Bloomington IN 47403. Note that the check is to help Jennifer Nanna.
For more information or to donate online, people can access COTA at http://www.cota.org.