BLOOMINGTON - Jeremy Powell, 23, doesn't have long to live. It might be a few days. It might be a few weeks. But he's using some of his remaining time to talk straight with whoever will listen about what he would have done differently to extend his life. | Cystic fibrosis facts

He would have been better about his treatments. He would have seen a doctor more frequently.

He wants to get a message to other young people who have cystic fibrosis, the disease that is killing him.

His lesson of the importance of treating cystic fibrosis - an inherited disease that affects the lungs and digestive system - applies to youth battling all sorts of chronic diseases.

"People should know that CF is not a cool disease. If I was more involved (in my care) when I was a kid, if I had gone to the doctor's more often…," he said as his voice trailed off.

"I lived like I didn't have a disease," he said as he sat on a couch in his mobile home at Southgate Estates while an intravenous tube fed antibiotics into his arm and oxygen was pumped into his nose. "If I had been treated, maybe it would have prolonged my life.

"I'm going to die - that's crazy! But it's even crazier to think that more people have to go through what I'm going through," said Powell, as his fiancee, Antoinette Raney, 20, sat beside him.

Raney said, "It took us to get to this point to know anything. If we had known what we now know, he would have been doing (more) treatments and going to the hospital (for a checkup) yearly."

Powell's doctor was reluctant to publicly discuss a patient's case, even though Powell had given him permission.

But Dr. Anthony Sauder, the director of the Cystic Fibrosis center at OSF Saint Francis Medical Center and Children's Hospital of Illinois in Peoria, didn't deny Powell's assertions, calling his patient "a straight shooter."

"We don't know precisely how long people have to live," Sauder said. "He has advanced, life-threatening lung disease and we know that cystic fibrosis can mean a shorter life. When there is a lot of damage to the lungs, when your reserves are low, you can get an acute infection and it can take you."

Sauder agreed with Powell that staying on top of the disease is important. His center treats about 100 Central Illinois patients, from newborns to people in their 60s.

"How CF affects people varies widely," Sauder said. "Some people have significantly shortened life spans. Other people are treated and do better." People who do their treatments can have a better quality of life.

While CF patients should be seen by their doctor four times a year, Sauder said Powell has a serious disease and bacteria that are resistant to antibiotics.

"I don't want him to blame himself for the road his disease has taken," Sauder said. "He blames himself, but he's done a lot of things right. He's shown a lot of courage in dealing with a very difficult disease."

Powell, who was born and raised in Bloomington, spent a couple years of his youth in foster homes.

"We (he and his two brothers) went back with my mom when she stopped drinking and got her life in order," he recalled.

He dropped out of Bloomington High School to work but later passed his General Educational Development tests. One brother, Ronnie, killed himself when Powell was 17. Two weeks later, Powell's best friend died.

All the while, Powell was living with cystic fibrosis. Few people knew.

Facts about cystic fibrosis

With CF, according to the Cystic Fibrosis Foundation, a defective gene causes the body to produce thick, sticky mucus that clogs the lung and leads to life-threatening lung infections, and obstructs the pancreas and stops enzymes from helping the body to break down and absorb food. While there is no cure, there are drugs to help clear mucus from airways, reduce inflammation and fight infection.

Powell was diagnosed at 2 months old. Over the years, he has done nebulizer treatments, which means inhaling medicine so it reaches the airways to clear mucus from the lungs and reduce the severity of lung infections.

But until recently he didn't do much else, he admitted.

"I lived life like a regular person," he said. He was in track and football for awhile in junior high and high school.

"I was so active, a lot of people didn't know I had cystic fibrosis. I thought it was better to keep it to myself. I didn't want to explain to everyone."

If someone heard him coughing or saw him taking a nebulizer treatment, he'd tell them he had a problem like asthma.

At age 15, he got sick and was in the hospital two or three times before he recovered. Powell didn't realize until recently that was a warning that he should be seeing a doctor quarterly.

As a teenager, he began working for his uncle at Powerhouse Construction after "working at pretty much every fast food place in town." But by age 21, the disease had sapped his endurance and he could no longer work.

Nearly two years passed. Last September, he found it difficult to breathe and had a fever of 103 degrees. At Saint Francis, he found out the bacteria Burkholderia Cepacia was eating away at his lungs. The bacteria often cause pneumonia in people with chronic lung disease.

In addition, he was diagnosed with diabetes. He was treated and returned home.

A few weeks later, Powell was back at Saint Francis and put on oxygen. He returned home Jan. 30. His lung capacity was at 11 percent and he was advised to check into hospice.

Powell is on oxygen 24/7, gets IV antibiotic medicine to treat his lung infection, takes Ultrase pills to give him the enzyme that his pancreas isn't producing, takes medicine to reduce pain and anxiety so he can function, and does three nebulizer treatments - albuterol, Pulmozyme and Tobramycin - to thin mucus and help him breathe and to fight Burkholderia Cepacia.

Several times a day, he puts on a mechanical vest that vibrates to shake mucus loose and help clear the airways.

Since returning from the hospital, he has had to spend nearly all his time in the mobile home he shares with Antoinette and his brother, Brandon.

"It's hard, really," Powell admitted. "We're talking about me (dying) and I'm only 23. I'm not scared to die, I just didn't want to go so soon. Whatever is on the other side, it's got to be better than what we deal with here."

Powell hopes that increased awareness leads to more research and eventually a cure.

"I don't want any other families to go through this."