Double lung transplant recipient is thankful to be alive

Nov. 28--LINDEN -- A year after she received a lung transplant, Peggy Winschel can find the breath, but not the words, to thank the person who died to save her life.

The 58-year-old received the transplant at Duke University Medical Center on Oct. 21, 2012, after being diagnosed in 2005 with idiopathic pulmonary fibrosis and polymyositis.

Idiopathic pulmonary fibrosis is a scarring or thickening of the lungs, without a known cause. It is characterized by a serious decline in lung function that is ultimately fatal.

Polymyositis is a rare inflammatory disease that leads to progressive muscle weakness and tissue damage.

Winschel depended on an oxygen tank to get enough air to her lungs, and she relied on her husband, Ken, for mobility.

Now that a year has passed, Winschel said she is allowed to write a letter to the donor's family, but she's not sure what to say. She said she has lost count of how many times she has started and stopped writing that letter.

"I've got drafts, but the words aren't right," she said. "There are no words. I don't know how to begin to thank this person's family for my second chance at life."

Saying "thank you" isn't difficult for Winschel and her husband, who retired from the Navy and now works in the Fayetteville Police Department's forensic unit. Without significant emotional, logistical and financial support from family, friends and strangers, Ken said Peggy would not be alive today.

She certainly would not be able to do the things she loves most -- singing Carrie Underwood's "Jesus, Take the Wheel," cooking and working in her vegetable garden.

The Winschels, who have been married 21 years, moved here from Jacksonville, Fla., in March 2005 to help care for Peggy's father, whose health was in decline. Six months later, Peggy had a recurring and persistent cough.

Born and raised in Fayetteville, Peggy thought she might be having allergy troubles as a result of moving back to the area after a long absence. Ken's Navy career as an avionics instructor and crewman on P-3 Orion radar planes meant the couple had lived in coastal communities in Maine, Hawaii and Florida.

Doctors originally diagnosed Peggy with pneumonia. A month later, in October, a persistent fever caused Peggy to be hospitalized, where doctors diagnosed polymyositis. Her condition, and the cough, worsened. Doctors soon found fluid on Peggy's lungs, which led to a trip to a pulmonologist, where she was diagnosed with idiopathic pulmonary fibrosis.

Doctors could not determine which condition was present first or which may have caused the other. Peggy began oxygen and medication treatment, but she and her husband were unsure about the future.

"I looked it up and the life expectancy for someone suffering like Peggy was only five years," said Ken Winschel. "I broke down crying."

Life continued with medication, oxygen, tears and uncertainty as Peggy's health slowly declined. Her reliance on her oxygen tank grew. Her mobility lessened; she had trouble walking, sitting and standing without aid. Some days were better than others, Peggy said, but the good days were outnumbered by the bad.

"At first, you're just on a little oxygen and you can still get around and do things," she said. "But you start needing more and more just to breathe, and you still can't do as much as you could before."

By early 2010, the couple wanted a second opinion and visited Dr. Steven Kream at UNC Specialty Clinics in Sanford. Kream helped direct the Winschels to Dr. Isabel Neuringer, a pulmonary specialist at UNC Comprehensive Transplant Center. Ken said Neuringer was the first to mention a lung transplant.

The idea was a tough sell.

"You've got to be kidding me -- that's what I thought at first," said Peggy Winschel. "I just felt like a double lung transplant didn't sound good at all."

Neuringer referred the couple to Dr. Paul Noble, division chief of the Interstitial Lung Disease Program at Duke University Medical Center, who concurred that a transplant was the best course of action.

Thus began a two-year roller-coaster ride for the Winschels as they navigated the complicated landscape of organ transplants.

According to statistics on the Organ Procurement Transplant Network website, the waiting list of organ donor candidates has about 120,000 names. The active waiting list of candidates has about 77,000. Some candidates are temporarily classified as "inactive" because they are medically unsuitable for a transplant or need to complete other eligibility requirements.

Between January and August, there were 19,262 organ transplants from 9,446 donors.

For the Winschels, the two-year process was filled with insurance and medical paperwork, doctor's appointments, consultations, physical therapy treatments (doctors ordered Peggy to lose 80-plus pounds to be eligible for the transplant), and all kinds of tests -- including CT, MRI and CAT scans, as well as a mammogram and a plethora of blood work.

The couple worked with about two dozen doctors and specialists to get ready for the transplant, including Dr. Shu S. Lin, an assistant professor in immunology and pathology and cardiothoracic surgery at Duke University Medical Center.

Lin said the transplant was Peggy's only option for survival.

"By the time patients get to where Peggy was with her health, there's really no other option," said Lin. "Her chances for survival without the transplant were not good. Getting her the lung was an urgent issue."

Lin said a lung transplant is rare, compared with heart, kidney and liver transplants. But, he said, a transplant is quickly becoming more popular in treating end-stage lung disease cases.

Duke University Medical Center, Lin said, performs about 140 lung transplants a year, which is significantly higher than the national average. That did not, however, mean Peggy's case would be a walk in the park.

"There are a host of immunologic hurdles that come with lung transplants," said Lin. "This procedure isn't too common, but we knew that it was her best bet."

Lin said most lung transplant patients at Duke have an 80 percent survival rate their first year after the surgery, which is also higher than the national average.

Before that could happen, Peggy and Ken had a lot of work to do, which included having to raise at least $10,000. That is what their transplant financial advisers estimated it would cost the Winschels to eat, live and pay for necessities and medication while living in Durham as they waited for the transplant.

They sold or cashed in everything they could -- stocks, savings bonds, jewelry, Ken's motorcycle. They also sought -- and received -- donations from family, friends and strangers. So many donations came in that the couple had to keep a ledger for tax purposes.

With the help of close friends and co-workers, including former shipmates of Ken still serving overseas, the couple came up with the money and received their final checklist in August 2012. That checklist included relocating to Durham and completing nearly two dozen additional physical therapy sessions before she was placed on the national list for transplants. She was put on the list Oct. 8, 2012.

"That's when the hard part -- the waiting -- really began," said Peggy Winschel. "We had to keep up all the treatments and appointments while waiting and hoping that a pair of lungs would come to us."

On Oct. 21, 2012, the couple received the call that would change their lives. A pair of lungs had come available. The surgery took six hours and was a success. After a day in intensive care and another six in a recovery unit, the Winschels went home.

"I told myself that if this worked, I wouldn't let this be in vain," said Peggy. "No one wakes up saying today's my day. I promised myself, and Ken, that we'd make the most of this second chance."

A year after the transplant finds Peggy back in her vegetable garden, singing her favorite Carrie Underwood tune.

There are little differences. She wears a mask, hat, long sleeves, sunscreen and gloves when she goes out; the drugs she takes (32 pills a day, all told) make her susceptible to skin cancer.

Peggy also is more prone to infection and can no longer be around large crowds without a mask. She has to constantly use hand sanitizer. Trips to buffets are forever off the menu, and all her steaks must be cooked well done for the rest of her life.

There are positive changes, too.

The couple still receive congratulation cards in the mail for Peggy. They get occasional Facebook messages about how their story inspired someone to become an organ donor.

"There are people still waiting, some for two years or so," said Ken Winschel. "We were so blessed and lucky."

Peggy makes it a habit to park in the space farthest from wherever she's going -- just to enjoy walking without an oxygen tank, and without Ken hovering nearby.

"Everyone needs to slow down and realize what, and who, they've got here," said Peggy. "For me, it's not about things; it's about life and the people you live it with."

Maybe she'll put that in the letter.

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