Five area lung transplant recipients met recently at Clearfield Hospital's Better Breathing Center to share their experiences, which all began with a diagnosis of incurable respiratory disease. From left are Larry Bauer of Johnsonburg; Rhonda Aveni, occupational therapist with The Better Breathing Center; Trudy Ensminger of Curwensville; Joseph "J" Angelo, physical therapist, Better Breathing Center; Alice Supko of Houtzdale; Joseph Brunner, respiratory therapist, Better Breathing Center; Larry Passmore of Clearfield; and Lloyd Knapp of Brookville. (Submitted photo)

"Organ donation is truly the gift of life. Without these lungs, I wouldn't have lived," said Trudy Ensminger of Curwensville, who underwent lung transplant surgery two years ago.

She, along with other lung transplant recipients Larry Bauer of Johnsonburg, Alice Supko of Houtzdale, Lloyd Knapp of Brookville and Larry Passmore of Clearfield met recently at Clearfield Hospital's Better Breathing Center to share their experiences, which all began with a diagnosis of incurable respiratory disease.

Mrs. Supko and Mr. Bauer were diagnosed with pulmonary fibrosis, which involves scarring of the lung. Mrs. Ensminger suffered from primary pulmonary hypertension, a rare lung disease in which the small arteries of the lung become narrow, making it hard for blood to flow.

Like Mrs. Ensminger, Mr. Knapp was also afflicted with a rare lung disease. His condition, Alpha-1 Antitrypsin Deficiency, is a hereditary disorder involving enzymatic damage to the air sacs in the lungs.

Mr. Passmore was diagnosed with chronic obstructive pulmonary disease. In COPD, the airways are partly obstructed, making it difficult to get air in and out.

Though they were diagnosed with different lung diseases, their symptoms were similar - shortness of breath, weakness and lack of energy. Some experienced discoloration of the skin due to lack of oxygen to their bodies. A few lost weight due to poor appetite.

"Before I got sick, I was 120 pounds. I dropped to 90 pounds. My wife had to do everything. I wouldn't have made it without her," Mr. Passmore, a retired police officer, said.

They all coped with their conditions for months and sometimes years, relying on medication and oxygen tanks to get them through the day. Because their diseases were progressive, treatments became less and less effective. Over time, their conditions worsened. They relied on family and friends for support.

"I couldn't do much of anything. If I cooked supper, I didn't have the energy to eat it. My lips and fingertips were blue. It was like I was sitting around, waiting to die," said Mrs. Ensminger, a home health nurse.

Mrs. Supko said, "The worst part for me was not having enough energy to do the things I wanted to do. When I wanted to go somewhere, I always had to be prepared and carry enough oxygen tanks with me. I missed some special occasions and had to give up going on vacation."

Like Mrs. Supko, Mr. Knapp said he had a hard time giving up the activities he loved, such as hunting and marching with the Thunderbird Drum and Bugle Corps.

"My left lung wasn't working at all, so after awhile, I couldn't do anything but sit," Mr. Knapp, a former railroad worker, said.

Eventually, all were told by physicians that their only option was lung transplant. All were placed on a waiting list at the University of Pittsburgh Medical Center.

Mr. Bauer's wife, Sue, recalled how stressful that time was for the couple.

"We lived with a lot of anxiety, not knowing if the call would come in time. I remember watching him while he slept to make sure he was breathing," she said.

Each remembers where they were when the call finally came. Mr. Bauer was in his kitchen when the transplant coordinator called on Dec. 22, 2005; Mrs. Ensminger and her husband were en route to a pre- and post-operative transplant support group at UPMC on the morning of Sept. 12, 2006, when her cell phone rang.

Mrs. Supko was about to leave for a doctor's appointment in State College when she received her call in March 2007. Mr. Knapp was at home preparing to take his medication when UPMC called Dec. 16, 2006.

Mr. Passmore was actually at The Better Breathing Center for a pulmonary rehabilitation session in August 2007 when his call came.

"They called at home first and found out where I was. Even though you believe it's going to happen, I was still in shock when they finally called," Mr. Passmore said.

Within hours after receiving the news, each was in Pittsburgh, undergoing compatibility testing. Once the donor lungs were deemed a match, surgery was scheduled. But they still had a long road ahead.

Many patients experience some type of complications within the first several months after transplant. The most common problems are rejection and infection.

Because the immune system will try to destroy the new organ, the transplant recipients must take anti-rejection medications daily. So far, their bodies have not rejected the donor lungs.

Unfortunately, the very medication they need to keep their donated organs healthy has severe side effects. It weakens the immune system, decreasing the body's ability to fight infections, cancer and other diseases. It caused kidney problems for Mr. Passmore.

"It's like we traded one set of problems for another, yet without the transplants, we would not be here," Mrs. Ensminger said. She had a scare earlier this year when she experienced a bacterial infection. Doctors feared her lungs might be damaged, but after weeks of hospitalization, she made a full recovery.

A big part of the recovery process for the transplant patients involved pulmonary rehabilitation at The Better Breathing Center. There, the treatment team consisting of Dr. Bruno Romeo, medical director, respiratory therapists, occupational therapists, physical therapists and a dietitian worked with them on breathing retraining, pursed-lip breathing techniques and increasing their strength endurance.

"Pulmonary therapy helped me a lot, and the therapists at The Better Breathing Center were great. They answered any question I had. And, if they didn't know the answer, they went out of their way to find it," Mr. Knapp said.

Mr. Bauer added that making the hour-long trip from Johnsonburg to Clearfield for pulmonary rehabilitation was "definitely worth it."

Rhonda Aveni, occupational therapist with The Better Breathing Center, said, "These individuals are a true testament to the benefits of exercise, both prior to and post surgery, and for anyone with lung disease. Through both difficult and good days, their positive attitude and commitment to the program contributed to their successful outcomes."

While medication side effects and inconveniences of ongoing tests, monitoring and rehabilitation are sometimes difficult to cope with, all agree those issues are small prices to pay for a second chance.

They are all enjoying life as they did before their illnesses took hold. And, needless to say, they are advocates for organ donation.

Mr. Bauer speaks to community groups about his experience and provides information about becoming an organ donor.

Mrs. Ensminger, whose custom  license  plate  reads, "2NU-LNGZ", tells everyone she knows about the importance of organ donation. She also shares her story with others who have or are about to undergo organ transplant surgery.

To learn about organ donation, log on to www.core.org  or call 1-800-DONORS-7.

For more information about The Better Breathing Center, call 768-2285.