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Without Delay: Wife honors man's wish to donate lungs in unusual program
Wednesday, June 14, 2006

Pam Panchak, Post-Gazette
Dotti Ward -- holding a photo of her horn-playing late husband, Chuck -- worked hard to help fulfill his wish to donate his lungs for research, pulling together the actions necessary to save the tissues within six hours of his death.
Click photo for larger image.
Shortly before he died, Chuck Ward, who once said he didn't want doctors to use him as a guinea pig, told his wife that he wanted to donate his damaged lungs for research.

At first, Dotti Ward, of Baldwin Borough, didn't want to hear it. But he persisted.

Think about it, honey, said the retired firefighter. If one other man doesn't have to leave his family because my lungs tell them what they can do to help him, it would be worth it.

"So I agreed with him," Mrs. Ward said. "It wasn't as easy as we thought it was going to be."

Their experiences were chronicled in an essay published last week in PLoS Medicine, an online journal of the Public Library of Science.

Because of the Wards, the staff at the University of Pittsburgh's Dorothy P. and Richard P. Simmons Center for Interstitial Lung Disease began what's called a warm autopsy program. The procedure is performed and tissues banked within six hours of death.

"There aren't any delays in processing, so all tissues can be used for research purposes," explained senior author Dr. Naftali Kaminski, the center's director. "Patient involvement and patient cooperation helped create this resource."

Mr. Ward, a lifelong nonsmoker, had a nagging, dry cough for 15 years that eventually woke him up at night and made it hard for him to talk on the phone, his wife said.

Asthma testing and treatment didn't help, so he went to a pulmonologist in 2002. A lung biopsy showed that he had idiopathic pulmonary fibrosis, in which the lungs become scarred. The cause is not known.

When the Wards got the diagnosis, the doctor gave them an information sheet to read and left them to review it.

"By the time we were done reading it, the two us were clutching each other and crying," Mrs. Ward recalled. "It said there is no cure."

They soon joined a support group at the Simmons Center, which they both found very helpful. But Mr. Ward, who was too old to be considered for a lung transplant, realized that there was a lot doctors didn't know about IPF.

And "he had accepted the fact he wasn't going to get better," his wife said.

At the end of a support group meeting, Mr. Ward drew clinical nurse specialist Kathleen Lindell aside to tell her candidly he wanted to donate his lungs when he died.

"He didn't want anyone else to suffer the way he did," she said. "He was hoping our researchers could find something in his lungs that might be the underpinning of what was causing this disease." Mrs. Lindell informed Dr. Kaminski of the offer.

"Although we were struggling with obtaining tissues for research, we actually never thought of a warm autopsy," he said. Dr. Kaminski discussed the possibilities with the head of the tissue bank, who told him that a similar program had been started for patients with prostate cancer.

Warm autopsy has also been used to study Alzheimer's disease and multiple sclerosis.

When Mr. Ward, 75, died at home on May 19, 2003, the medical staff were in California at a professional meeting. But Mrs. Ward persevered, arranging conference calls and logistics to make sure she could honor her husband's wishes.

"They really need to get the tissues within the six-hour window," Mrs. Lindell said. Patients can put their desire to donate in writing, but at the time of death, family members can refuse the warm autopsy.

So far, though, families have gone the extra mile to ensure that it can happen, she said. One out-of-state family contracted with an ambulance service to transport the donor's remains, a trip that took three hours.

A dozen IPF patients have participated in the warm autopsy program after Mr. Ward's donation. Already, the tissue samples have suggested new avenues of research, Dr. Kaminski said.

Mr. Ward, who played trumpet in the River City Brass Band, "was a little guy and very unassuming," his wife said. "He was a very giving, loving person."

He gave her a Mother's Day card the week before he died, which she had thought was picked up for him by one of their children.

Mrs. Ward learned after her husband's death that in fact he had got out of his sickbed to drive to the closest drugstore and get it himself while she was at work. When his car stalled in the driveway at home, he asked a neighbor to push it in the garage so she wouldn't find out and get upset. By then, he needed supplemental oxygen around the clock.

Prior to its publication, Mrs. Ward read the essay that Mrs. Lindell, Dr. Kaminski, and their colleague Judith Erlen had written for the medical journal.

"I just was so proud of him," Mrs. Ward said. "He would do things for other people and he never expected you to thank him."

First published on June 14, 2006 at 12:00 am
Anita Srikameswaran can be reached at anitas@post-gazette.com or 412-263-3858.
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