Tuesday, August 10, 1999

Victim of rare disease waiting to breathe easy

   When doctors diagnosed him with a rare genetic disease of the liver and lungs, 33-year-old Benjamin Terry couldn't believe that he, who had never suffered a broken bone or missed a day of work because of illness, had a mere three months to live.
   "I got so scared I went looking for a second opinion," says Terry, who had originally sought medical attention because he hadn't been able to shake a bout of the flu that he had had for three weeks. What he had, however, was no pedestrian bug.
   His shortness of breath and fatigue was caused by the lack of a protein that protects the lungs from germs, air pollution, cigarette smoke and other irritants. Without the protein, the body becomes predisposed to illnesses, most often to what's commonly referred to as genetic or inherited emphysema.
   Again, Terry got the bad news: no known cure. "But he gave me six months to live. I went to another doctor and that one gave me at least a year.
   "That was in '95. It's '99 and I'm still here."
   Waiting for lung transplant
   Still here and still fighting, says Terry, managing a smile despite the oxygen tank he must keep nearby and the physical therapy he must undergo three times a week to keep fit. The therapy is critical if he is to hang on to what precious health he does have. His goal: to not need a respirator. Do that and he just may have a shot at a double lung transplant, doctors have said.
   "I'm sick enough now to be on a waiting list for a lung transplant," says Terry, "But not too sick to be taken off of the waiting list."
   Terry is looking at a wait of at least 12 to 18 months before getting to Baylor University Medical Center in Dallas. Meanwhile, he must adhere religiously to doctors' orders and keep his health from deteriorating further. It is a wait Terry is determined to ride out with the help of his wife, Karen, a convenience store cashier. He's already been to hell and back, having sunk into a depression and turned to drugs when he first learned of his disease and death seemed all around him.
   His brother died of the disease a few months before Terry's diagnosis. Six months after Terry learned that he had the same genetic condition that killed his brother, his father died of a massive heart attack, followed by his uncle's death by colon cancer and mother of liver cancer. Other relatives also died during that period.
   'I've got too much to live for'
   "Everything seemed to be taken away from me," says Terry, who had worked in refinery construction and auto mechanics since the age of 16 and now found himself permanently disabled.
   With the help of a 12-step rehab program in Houston, Terry kicked the drug habit and last year took his last smoke. The cigarette smoking, which he'd done for 15 years, was exacerbating his condition.
   "I've got too much to live for," says Terry. "I'm a fighter and I won't give up."
   Rallying to Terry's support is New Hearts Support Group Inc., an association that helps those facing the transplant of any organ, not just hearts. The group is sponsoring a benefit barbecue from 11 a.m. to 3 p.m. Sept. 12 at VFW Post 3837, 12030 Leopard St. in Annaville. Plate tickets are $5. For information, call 299-1443 or 880-5371.
  
  
 

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  © 1999 Corpus Christi Caller Times, a Scripps Howard newspaper. All rights reserved.