By Reggie Ellis

Even after a brief conversation, there are a lot of things you'll know about Abby Deathriage. She has a smile that sweeps across her face, talks a mile a minute, has an infectious laugh and a strong love for her family.

What you wouldn't know is that six weeks ago she was near death.

For the past four years Deathriage has been suffering from pulmonary hypertension (PH), a rare lung disorder in which pressure in the pulmonary artery rises, restricting the amount of blood flowing from the heart to the lungs. The blood vessels in the lungs narrow and restrict the amount of blood that is oxygenated and pumped throughout the body. The artery pressure also overworks the heart resulting in an enlarged heart and increased risk of cardiac arrest. One of the few disorders that affects both the heart and lungs directly, the only cure for PH is a heart and/or lung transplant.

Although her heart was enlarged, doctors felt a heart transplant wasn't necessary, but they would have to replace both of her lungs.

"I was afraid of surgery for a long time," Abby said. "But eventually you get to a point where it is the only option. I didn't want to live my life in bed anymore."

In January, Abby was put on the hot list, a short list of people who are in dire need of a transplant. All she could do was wait for the call. On March 24 she went with her parents, J.C. and Mary Lou Smith, to Chukchansi Casino to celebrate her mother's birthday in the hills of Coarsegold - where there is no cell phone service.

"I really just stayed in the room and slept," Abby said. "But I was worried that we might get The Call, so I asked my parents to leave."

As soon as they entered Fresno the call came on her cell phone. She was in surgery at University of California, Medical Center the following morning.

"It was the best birthday present I could have asked for," her mother said.

Breathtaking disorder

Only about 400 people in the United States are diagnosed with PH each year but more than 7,000 have died as a result of it in a single year, according to the National Heart, Lung and Blood Institute (NHLBI). About 61 percent of those diagnosed are women, and about 37 percent of the women are under the age of 65.

Because of the rare nature of the disorder, PH is often misdiagnosed in routine medical exams. Even in its later stages, the signs of the disease can be confused with other conditions affecting the heart and lungs, such as asthma. PH is normally diagnosed only after all other possibilities have been ruled out.

Four years ago Abby went into her doctor complaining of shortness of breath and a lack of energy. The doctors diagnosed her with asthma and prescribed her four different inhalers.

"The doctors here weren't familiar with the disease," Abby said.

After her condition did not improve, Abby went to the UCSF Medical Center where a pulmonologist diagnosed her with PH. The doctors gave Abby an intravenous catheter to inject a drug called Flolan. The drug is a form of a naturally occurring molecule in our bodies called prostaglandin, which lowers blood pressure in the blood vessels by removing the build up of lipids, according to the pharmaceutical manufacturer GlaxoSmithKline. Since the affects of the drug only last three to five minutes it must constantly be injected into the body. If she went anywhere outside of the house Abby had to use a wheelchair, have a bag of medicine and a backpack with an oxygen tank.

"It was like being a baby, I was basically helpless," said the 37-year-old mother of two. The side effects of the drug can include jaw pain, headache, flushing, nausea, diarrhea, and vomiting. Abby experienced them all. She was also put on 6 liters of oxygen 24 hours a day to help oxygenate her blood. Normal oxygenation is 92 percent or above. Even with the medicine and oxygen, Abby's body could only attain 85 percent.

"I couldn't take showers because the steam would choke me," she said.

Abby's health steadily deteriorated during the next year. She became winded walking to the bathroom and back. She often slept 14-16 hours because she did not have the energy to get out of bed. The medicine affected her sense of taste and few foods seemed edible.

"My mom would make me whatever I wanted to eat," she said. "Almost nothing had any flavor except for mashed potatoes and corn."

In October 2002, Abby was rushed to UCSF Medical Center where she was hospitalized for 21 days. Because there is no known cause, the only treatment for PH is a transplant. It was then she was placed on the transplant list, and then moved to the hot list in January and surgery to replace both of her lungs in March.

Her mother said her smile wasn't always as bright, but it was always there despite the fear and frustration.

"I felt like we had the whole world praying and Abby always maintained a positive attitude," Mary Lou said. "It's a miracle the way she looks now."

Abby Again

Ten days after the two-and-a-half hour operation, Abby had already made a miraculous recovery. She was up and walking and feeling better than she had in four years.

"The doctors said I was a poster child for this surgery," Abby said. "I had forgotten what it was like to feel good."

Her conditions continued to improve over the next few weeks. Now, just six weeks after the operation, Deathriage's enlarged heart has gone down 50 percent and in another few weeks should be back to its normal size.

"I knew she was back to the old Abby when she started talking to fast I could hardly understand her," her father said. "Nobody can believe it."

Abby will never be completely healthy. As with any transplant, the lungs are foreign to her body and the body will continue to treat them as a constant infection. While her immune system is preoccupied, it make her more susceptible to common illnesses, viruses and bacterial infections, that can be debilitating.

But that won't stop Abby from promoting all the positives of organ donation. She said as soon as she has fully recovered from surgery and her body has regained most of its strength she will go to local hospitals and speak about the need for people to register as organ donors.

"It is a miracle what they can do with modern technology, but we still need people to donate their organs. Everybody should donate their organs," she said with her sweeping smile.

Who could say no to someone like Abby?

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