Family promotes organ donation

MARIETTA – A little over three weeks after being placed on the national waiting list for a double-lung transplant, Roger Weaver and his family made three trips from the Valley to the University of Pittsburgh Medical Center’s Presbyterian location in Oakland, Pa.

Each time, they went in the hope that a set of lungs would be available for the 61-year-old Marietta resident, whose lung capacity had been reduced to 12 percent by a combination of emphysema, asthma, tuberculosis, chronic obstructive pulmonary disease and more that he attributes in part to years of smoking and breathing hazardous materials at work. Each time, they came home without the surgery being performed.

The first time, Weaver was the backup patient, and the lungs were transplanted to a woman he said was much worse off than him.

“It just wasn’t meant to be,” he recalled Monday, “after the shock wore off.”

Another time, the deceased individual’s lungs had been too damaged by injuries.

But on April 19, 2012, the day after Weaver, his wife Dorane and sister, Sue Dunn, returned from another fruitless trip, the call came again, as Weaver sat in his pulmonary doctor’s office.

“I just had a good feeling about it this time,” Weaver said.

They arrived at UPMC-Presbyterian and once again had to wait. But eventually, the medical team came into the room and moments later, Weaver was on his way to surgery.

“I had five minutes to say my goodbyes,” said Dorane Weaver, 51, before correcting herself, “Not goodbyes. I had five minutes to say my ‘see-you-laters.'”

Because Weaver was the only person on the transplant list with his blood type, doctors had told him his transplant was imminent. Other individuals are on the list much longer, with an estimated 18 people a day dying while waiting for a transplant.

The need of patients like Weaver and others is why organizations like Lifeline of Ohio mark April as National Donate Life Month, working to raise awareness of the need and dispel myths and misconceptions about organ donation. Marietta Memorial and Selby General Hospital held events this month where people could learn about organ donations.

Memorial Health System director of marketing and public relations Jennifer Offenberger said that while a total of 13 people signed up as organ donors, that wasn’t the primary focus of the events.

“It was also more about education and sharing information so they could … make a decision when the time’s right for them,” she said.

Memorial works with Lifeline of Ohio, a nonprofit organization that promotes and coordinates organ and tissue donation in 37 Ohio counties, as well as Wood and Hancock counties in West Virginia.

The heart, lungs, kidneys, liver, pancreas and small bowel from a single donor could potentially be transplanted into eight different recipients, according to Kaitlyn Thompson, media relations and community outreach coordinator for Lifeline of Ohio. Tissue such as corneas, bone, fascia, skin, veins and heart valves can also benefit as many as 50 people.

About 20 years ago, Teresa Adams was a nurse at Marietta Memorial Hospital and witnessed the first cornea transplant performed here.

“It was just amazing to me that there was this sudden, tragic event and now this person on our table was going to be able to see better,” she said.

Today, Adams is director of specialty care at Camden-Clark Medical Center in Parkersburg, overseeing critical care areas in the hospital and often talking with family members about donating the organs of their loved ones. At times, she, physicians or Lifeline representatives have to explain away some misconceptions about the process.

“A lot of people think that they’re not a good candidate because they have an extensive health history,” Adams said.

Only being HIV positive or having active cancer would completely rule a person out as an organ or tissue donor, Thompson said. But even then, she said, they should still register, because legislation in Congress could change requirements and someone might be cancer-free by the time they pass away.

People with diabetes and cancer survivors without active cancer can still donate.

Some people may worry that if they or a loved one are an organ donor, medical personnel won’t work as hard to keep them alive. But Adams said the No. 1 priority at all times is caring for the patient.

“We don’t even talk about or consider organ donation until … we find out they are brain dead,” she said.

At that point, if organ donation is desired, Lifeline is notified and they review the patient’s medical history to see whether they are a candidate for donation. Only the organs and tissues specified by a donor in the Ohio Donor Registry will be taken, according to Lifeline.

A person may be kept breathing and their heart beating by artificial means, while preparation is made to remove the organs and/or tissue. That can take up to 24 hours, but that will not add on to the family’s expenses, Adams said.

“Those expenses are taken care of by Lifeline of Ohio,” she said.

Once the process is explained, many families are supportive of organ donation, Adams said. But sometimes families will resist, even if their loved one was registered as a donor. That’s why it is so important for individuals to let their families know in advance if they want to be organ donors.

“That’s (death) not the time for the family to be sort of blindsided by this request,” Adams said.

Weaver and a number of his family members were already registered as organ donors before his experience. But afterward, Dorane Weaver has become more of an advocate.

“I’m pushing everybody I know now,” she said.

In some cases, recipients meet the families of donors. Weaver wrote to the family of the middle-aged man whose lungs he received, but never heard back from them. He said he simply wanted to express his thanks.

The transplant surgery didn’t mark the end of Roger Weaver’s journey. His heart stopped the day after, and complications kept him in the intensive care unit for six weeks. After that, he spent four or five weeks in the hospital’s transplant unit.

After 10 days at HealthSouth Western Hills Regional Rehabilitation Hospital in Vienna, W.Va., Weaver was back at UPMC-Presbyterian for another three weeks. Although he’s spent a lot of time in and out of hospitals over the last year, Weaver says he feels a lot better.

“It’s nice to be able to breathe,” he said.

His last lung function test showed a 73 percent capacity.

“From 12 percent to 73 percent, that’s remarkable,” Weaver said.

The family is still dealing with the financial impact of the transplant and subsequent care. Although insurance covered almost all of the direct medical expenses, the Weavers still had to spend plenty on gas, food and accommodations when they returned to Pennsylvania for additional treatment.

The Roger Weaver Fund has been established at Advantage Bank to help offset these costs. Dunn noted none of the money goes to family members who went up to visit.

A fundraiser is planned for Saturday at the county fairgrounds’ Junior Fair Building, with a craft show, silent auction and country store at 9 a.m. and spaghetti dinner from 4 to 6 p.m., followed by a gospel sing.

They have also held a number of fundraisers, including craft shows, spaghetti suppers and auctions, and received more than $700 when Smitty’s Pizza donated a portion of its proceeds on two different days.

“Words just can’t describe it,” Weaver said. “It’s been a greater success than what I thought it would be.”