05-28-03: Chickasaw woman organizes local walk to help others breathe easier

05-28-03: Chickasaw woman organizes local walk to help others breathe easier

By MARGIE WUEBKER
The Daily Standard

    CHICKASAW - Jean Liesner longs to see the day when research unlocks the mystery surrounding a rare lung disease called lymphangioleiomyomatosis or simply LAM for short.
    Instead of sitting and waiting for that to happen, she and a legion of friends are organizing a Breath for Hope Walk to be held from 7-9 p.m. June 10 at Marion Local Booster Field in Maria Stein. Money raised through the event will support much needed research.
    LAM affects women during their prime child-bearing years, replacing healthy lung tissue with bundles of unusual muscle cells. The cause is unknown and there is no cure or effective treatment even though the disease was identified more than 65 years ago.
    Liesner, who is 53, developed respiratory problems in the early 1980s. Both lungs collapsed within a two-week period and she had difficulty walking and talking due to shortness of breath. It wasn't long before she needed oxygen around the clock.
    "Doctors found tiny blisters on my left lung," she says. "They told me the condition was something usually found in tall, skinny men who smoke a lot. I certainly didn't fit the classic mold."
    The LAM diagnosis came in March 1995, resulting in mixed feelings. On one hand, she was grateful there was some explanation for her health problems. And on the other hand, the prognosis was anything but optimistic.
    "The pulmonologist printed out some information after the diagnosis was made," she recalls. "It wasn't pretty and there wasn't much hope. Most patients live 10 years; I had made it to 12."
    Liesner felt alone like a ship adrift on a rough sea. That is until she eventually met Sue Byrnes, who founded The LAM Foundation in August 1995. Byrnes and the non-profit organization became her anchor.
    Byrnes also had encountered the same uncertainty and loneliness after her 22-year-old daughter was diagnosed with the progressive lung disease. At that time, there was little if any information about the condition, no support network for women affected by the disease and no research into the cause or effective treatment.
    In less than eight years, her international network has raised more than $4 million, while providing support to the sisterhood of women dealing with LAM and educating doctors around the world about the disease.
    "Planning the walk is something I can do for the organization," Liesner says. "Participants will walk in exchange for pledges, with all the money raised going for LAM research. I am hoping for a large turnout."
    Pledge sheets are available at the library and bank in Chickasaw or by calling Liesner at 419-925-4319.
    People who meet Liesner for the first time often express surprise because she does not look like someone with a serious illness. The only clue is the portable oxygen tank she carries outside the house. She goes about her everyday life inside the house while tethered to an oxygen tank by 40 feet of clear plastic tubing.
    "I have a support network that goes far beyond my husband Frank and our two children," she says with a smile. "I have sisters dealing with the same problems all over the world. The LAM registry currently contains the names of 700 women, and we have regular lamposiums that draw noted researchers."
    Liesner and others battling the disease travel to Washington, D.C. every six months for testing at the National Institute of Health. The routine, financed by a foundation grant, includes chest x-rays, pulmonary function studies that measure the volume of oxygen inside the lungs, blood tests, lung biopsies and computed tomography, a procedure that produces three-dimensional pictures showing the inside of the lungs.
    "We endure the poking and prodding," she admits with a smile. "But we enjoy the opportunity to network with other LAM girls. We were strangers at one time and now we are sisters walking the same road."
    There have been some advances in diagnostic procedures through research. Blood and urine tests can now pinpoint the disease, which formerly was identified only by pulmonary studies.
    The cause remains elusive, but researchers think hormones could be involved. A tissue bank started by the foundation is helping doctors throughout the world understand the progression of the disease and hopefully isolate the gene responsible for its cause.
    LAM causes abnormal smooth muscle tissue to grow in the airways of the lungs, gradually blocking the oxygen supply. In the early stages, patients experience shortness of breath only during strenuous exercise. However, it progresses to a point where walking, talking or even resting are difficult.
    Liesner is currently on the "inactive" transplant list at the Cleveland Clinic. She knows it is only a matter of time before her name is transferred to the "active" list.
    One acquaintance recently underwent transplant surgery after her pulmonary function studies dipped to 17 percent. Liesner currently has a 34 percent level.
    "Right now my lungs are too good for a transplant if you can believe that," she says with a smile and a glance at her long trail of plastic tubing. "LAM is a progressive illness and at some point I will need that transplant."
    In the years since the diagnosis, she has weathered a lot of storms - feelings of hopelessness and uncertainty as well as the loss of LA sisters.
    "I have hope for a better tomorrow," she says. "I'm here because God still has things for me to do. The walk is my mission in life right now."

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