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Shirley woman with primary pulmonary hypertension disorder credits miracles
SHIRLEY - June 03, 2005 - Bangor Daily News - Seated at her kitchen table on a recent day, Jeannette Morrill, 52, reached down, removed a small black bag from around her waist and pulled out its contents.
Unlike most fanny packs, there was no lipstick or comb inside, just an odd assortment of items - a black cassette, a pump that made a zipping sound, and a thin tube, all connected to one another and sandwiched between two blocks of ice.
As one of the country's longest-living survivors of primary pulmonary hypertension, a blood vessel disorder of the lungs, Morrill relies on the tiny pump and tube that snakes from the bag into her heart to deliver medicine from the cassette every 35-40 seconds.
"This is my lifeline, because without it, I don't think I would be alive," Morrill said during a recent interview.
Although the survival rate of the average person with PH is five years after diagnosis, Morrill has beaten the odds for 29 years, and she credits her longevity to miracles.
"I can't tell you how lucky I've been because of the doctors and nurses who have been placed in my path; they have saved me many times," the former physical education instructor said.
Living with the progressive disorder, which is characterized by abnormally high blood pressure in the arteries of the lungs, hasn't been easy, and her physicians don't know the cause. But Morrill claims she has come to terms with its restrictions. "I never felt gypped," she said.
On good days, she cleans her one-story ranch home a few minutes at a time, and she reads. Once very athletic, she now finds the only sport she can enjoy is golf, and for that she must rely on a golf cart.
"Generally, she always looks good," her husband, David Morrill, said recently.
So good, at times, that people make rude comments or glare at her when she parks her vehicle in a handicapped spot.
"That's kind of hard to get over. I know that I need it," she said. Just as she needs the pump, the vials and cartridges of medicines that fill a bookcase in her den and the ice packs that fill her freezer and coolers in the family vehicles to keep her alive.
"It definitely affects what you do; it's difficult to make a long-range plan," David Morrill said. The couple married, he said, about a month after Jeannette Morrill's diagnosis.
The first clue that Morrill was ill came in mid-1974 when she fainted while running laps as a coach with her basketball team at Georges Valley High School in Thomaston. A doctor initially shrugged it off as a "freak thing," but Morrill's health continued to decline. By the next summer, "I couldn't climb stairs without becoming out of breath," she recalled.
A series of tests in 1976, including an echocardiogram and a heart catheterization, one of the most accurate and useful tests for PH, made the confirmation of the disease. Because the early symptoms of PH are easily confused with other conditions, such as asthma, a diagnosis then was typically made up to three years after the first signs or symptoms, Morrill said.
By then, "I was basically bedridden; I would just faint when I'd do anything," Morrill remembered.
"I basically went into the hospital for what I thought was the last time in 1979," she said. "I was given two years to live."
With her life on the line, Morrill grasped at every glimmer of hope over the years by participating in new drug trials and studies. Some drugs worked well and allowed her mobility, while others were less effective.
"I don't feel like a guinea pig, but I feel like I'm willing to try anything to help them find the cause or cure,"' Morrill said. The Flolan infusion drugs she is now on are working well, she said.
When Morrill was diagnosed with primary pulmonary hypertension (PPH), the outlook was bleak.
"I remember feeling the isolation of being alone when I was first diagnosed 29 years ago," Morrill said. Little was known about PH then, compared to today, she said. Now there are support groups and a national PH foundation, in which she participates.
Physician awareness of the disease is much better now than 20 years ago, according to Dr. Joel A. Wirth of Portland, the pulmonary specialist who now treats Morrill. Diagnostic tools also are markedly improved, he said. "The prognosis for patients with pulmonary arterial hypertension had been quite poor in the past; however, the first medication to consistently be effective in treating the disease was FDA-approved in 1996," Wirth wrote recently in an e-mail. He said there are now four FDA-approved medications available for use and several more are in the clinical trial phase of development.
"The hard part is what works for me may not work for someone else," Morrill said. She said she and her husband rejected the possibility of a lung transplant because she wouldn't be a suitable candidate.
It hasn't helped that she has experienced other health problems over the years that may or may not be associated with PH. Morrill had a cancerous thyroid removed, suffers from rheumatoid arthritis, has had kidney stones, and most recently had a device implanted on her body to relieve fluid in her brain.
"I'll go six months to a year and then there'll be another hurdle, but it's a hurdle that I want to get over," Morrill said. "I've started over so many times that I guess I'm not ready to quit; I just keep going."
Those setbacks bother David Morrill, who says he has "hardened himself" emotionally to avoid getting depressed because his wife needs his support.
"It seems every year there is another complication, but Jeannette perseveres," he said. "She comes up against a roadblock, and she works her way through it."
Morrill acknowledges that she relies on her husband a lot. "The peace of knowing that he's there, I just can't replace that," she said. The Shirley woman also relies on the love and support of her sons, Brian Morrill, 30, and Ian Morrill, 25, and her close friends who keep her grounded, she said.
"I struggled so hard over the years with why am I still here, what purpose am I supposed to be doing, especially when I look around and see that so many people in my support group have lost the battle," Morrill said. "I just can't give up now because I want to live for them."
Jeannette Morrill of Shirley talks with radiology technologist Walter Armstrong before a CT scan at Charles A. Dean Memorial Hospital in Greenville on Wednesday morning as Dennis Welsh, medical technologist and administrative director of diagnostic and project management, watches over the process. Morrill has primary pulmonary hypertension and was at the hospital to check on a fluid buildup in her abdomen.
Diana Bowley
dianabdn@downeast.net
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