Youngstown woman awaits lungs

The ailing woman's motto could well be: 'My suitcase is packed.'
By WILLIAM K. ALCORN
VINDICATOR STAFF WRITER
YOUNGSTOWN -- Genevieve Howard prays every day that a donor match will be found to replace her disease-weakened lungs before it is too late.
When she gets the call that lungs are available for her, Howard has just three hours to get to the Cleveland Clinic for the life-saving organ transplant operation.
"They can call me on my home phone or my cell phone. My suitcase is packed," she said.
Unfortunately for Howard, who has been registered with LifeBanc, the organ and tissue recovery agency for Northeast Ohio, since June 13, 2006, she has not yet received the vital call.
"It is frustrating and scary. Here I am, 52, and haven't begun to live my life the way I want to," she said.
"I know it's God's will, but if I can just get some lungs ...," she said, her voice trailing off.
Howard is one of some 1,400 men, women and children in the 20 counties served by LifeBanc in Northeast Ohio that are waiting for organ transplants. The number waiting for transplants in all of Ohio is 2,600, and in the United States, nearly 100,000, said Charles Heald of LifeBanc.
Heald said that out of 81 people in Ohio waiting for a lung transplant, 21 have waited 30 to 90 days, 23 have waited 90 days to six months, and 21 have waited six months to a year. Because Howard needs a double-lung transplant, finding a match is particularly difficult, Heald said.
Incurable disease
Howard, a member of St. James AME Church, is suffering from sarcoidosis, which has no known cause or cure.
According to literature from the Cleveland Clinic, where Howard's transplant would take place, sarcoidosis is an inflammatory disease that affects one or more organs, but most commonly the lungs and lymph glands. As a result of the inflammation, abnormal lumps or nodules, called granulomas, form. These granulomas may change the normal structure and possibly the function of the affected organs. The disease can also affect the skin, eyes, joints, liver, heart and other organs and body systems.
Blacks, such as Howard, face a four- to 17-times greater risk for the disease than do Caucasians, according to the clinic.
Her local pulmonologist, Dr. Lawrence Goldstein, said Howard is a wonderful, compliant patient who does everything she has been asked to do.
"If anyone deserves lungs, it is Genevieve," he said.
"This is really hard," said Howard's fianc & eacute;, Vincent Jenkins, a dispatcher for R & amp;J Trucking in Boardman.
"Every time I come home, the first thing I do is check to see if she is breathing," Jenkins said.
Howard's visits to the hospital are becoming more frequent. Two weeks ago she had quit breathing and ambulance personnel revived her, and last week she was in the hospital again, said Marcus Gilbert, her oldest son.
"It's scary. It's hard to explain my feelings," said Gilbert, who with his fianc & eacute;e, Wendy Watt, lives in Niles. Howard's other son, Atrel Gilbert, lives in New Castle, Pa. Her mother, Rosemary Gilbert, lives in Youngstown.
Years of lung problems
Born in Fairmont, W.Va., Genevieve came to Youngstown at age 6 and graduated in 1973 from South High School. She studied at Choffin Career Center for two years to become a medical secretary, then lived in the Cleveland area until moving back here seven years ago.
Howard has had breathing and lung problems for many years. She was told in 1984 that she had asthma. She got "real sick" in 1997-98 and went into the hospital with pneumonia. She was finally diagnosed with sarcoidosis in 2003.
Her symptoms at the time were weight loss, fatigue and constant coughing.
"There was no pain involved, but with every little task I'd get so out of breath," she said.
Today her lifestyle is severely limited by the disease. She uses oxygen to help her breathe during the day and wears a nasal mask that creates a flow of air to keep her airways open while she is sleeping.
Howard urged people to think about becoming organ donors, especially during April, which is National Organ and Tissue Donation Awareness Month.
"They could save someone's life, maybe even mine," she said.
alcorn@vindy.com