Mike Tharp: How precious is a single breath

December 31, 2011 

We take them for granted the way we do breathing.

In fact, that's what they do for us -- breathe.

Our lungs.

Only when we're threatened with losing one, or both, do we begin to understand how important they are to our life, to living, period.

That's what Chuck and Linda Barenchi had to face in February. The Atwater couple flew to Duke University in Durham, N.C., for a double lung transplant. They'd known since 2008 that Chuck, along with his wife, a longtime Farmers Insurance manager here, had idiopathic pulmonary fibrosis.

In shorthand, that's severe pneumonia with no known cause, which typically strikes older adults.

What the couple has been through in the past 10 months reads like the trials of Job. Heart bypass. Two transplants. An eye stroke. Back surgery.

As they enter the New Year, however, they're both upbeat about coming home and sticking around quite awhile. "There were times I was worried how things could turn," says Linda. "But no matter how bad the health issues are, there are miracles. You have to believe in them and pursue them."

Even as it became harder and harder to breathe, Chuck refused to cut back much on his activities, especially travel. Linda remembers them visiting Australia last year. Near Ayers Rock, the famous sandstone formation in the outback, Chuck used his walker to climb on a camel. While she took video, he braced his Inogen portable oxygen container on the animal. Later that year they went to New York at Christmastime to see the city in season, and total strangers stopped to ask how he was making it with all that gear.

But even his toughness couldn't conquer the disease. He was scheduled for surgery at UC San Francisco in January. Then just before he was to be admitted, doctors discovered that a three-way heart bypass was necessary. UCSF doesn't do those with transplant situations. Duke does. UCSF pulmonologist Hal Collard, who Chuck calls his "guardian angel," worked with a colleague at Duke to get Chuck transferred there.

Local physicians were instrumental in the couple's early decisions: Rama Nandipati, Nicolas Dela Pena and the county's health rehabilitation manager, Henry Moreno. Chuck and Annetta Meyer and Mark Seivert were among some 300 friends throughout the county who rallied round them.

So on Feb. 3, with about 50 family and friends to see them off at Merced Airport, the Barenchis boarded a red Lear jet air ambulance. He couldn't fly commercially or drive cross country because he needed so much oxygen. There was a 1 percent chance, Linda reckons, that their insurance would cover the $23,665 cost of the flight -- but through three subsidiary policies, they were able to get reimbursed.

At Duke doctors proceeded with the heart surgery -- but it became a much more complicated procedure and they performed a five-way heart bypass. Linda says if the physicians had known going into the operation that it would be a five-way instead of three, they wouldn't have done it "because Duke hasn't had a patient survive" that operation. Only a handful in the whole U.S. have made it.

Chuck did.

In early April came word that a left lung was available. Doctors did the 11½-hour surgery and he was hospitalized for 17 days. (Once they got to Duke the couple moved into a small apartment in Durham for the duration.) The experts wanted to do the second transplant fast, since they feared bacteria from the native lung could migrate to the new one. Chuck was working hard at Duke's renowned Center for Living Rehabilitation -- but with a bad back whose stabilizers had come loose during the long surgery, his rehab was restricted.

On Aug. 9 his right lung was transplanted. That surgery went well, but his back problems worsened to a pinched nerve. He can't walk now and is set for a wedge to be placed between disks soon. Total back fusion is scheduled for March.

Once she landed in Raleigh, Linda resumed the pace she'd maintained ever since she entered Livingston High School. If you want something done, give it to a busy person, goes the old saying -- and Linda has been that busy person.

She started the Caregivers Support Group, which meets every Tuesday. The 30 or so members swap tips on how to deal with life-changing medical events. Patients must take anti-rejection drugs, for instance, several times a day for the rest of their lives. A lot of them leave the hospital with feeding tubes and "pic lines" for antibiotic infusions every six hours.

She maintains an email list of about 130 people with updates four times a week on what's happening at Duke in "Lung News." She also authored a booklet, "What to Bring to the Hospital," with eight bullet points for the caregiver and patient, and "While Patient Is in the Hospital, They May Want..." with seven bullet points for the caregiver.

Despite their professional expertise in insurance, they're out of pocket $300 to $400 a month, mostly on meds. One costs $7,000 a month pre-premium payment. People on the waiting list for transplants often throw fundraisers to help defray costs.

Duke's specialists have performed more than 1,100 lung transplants, according to www.dukehealth.org, and more double lung transplants than any other center. Linda says she's seen Medicaid patients there.

Chuck, 69, and Linda, 63, married a dozen years ago. They met while working at Farmers; she'd been divorced 12 years, he'd just gotten divorced. They both knew the old song about fishing off the company dock, but after working together several months in the Pleasanton office, he conjured the courage to ask her to dance at a company party at the Merced County Fairgrounds -- Feb. 20, 1999, she remembers. On June 12 that year, they got hitched. She retired at 55, he at 62.

They enjoyed each other's kids and grandkids and traveled

Then came the diagnosis.

Both immediately went into overdrive. "We were too busy knocking on doors of wherever would accept us to deal with the alternative of not making it," Linda recalls. They did face reality. They finished their will. They bought cemetery plots.

They're not out of the woods yet. The danger of infection always lurks, and he must get stronger to endure the back fusion surgery next spring. They're shooting to return to Atwater in June next year, and family members are staying in their Atwater home, ready to pick them up when he can fly commercially again.

On Christmas Day Chuck's son Scott held up Lacy-Lu, their West Highland White Terrier, so they could see her on Skype. The puppy could hear them but ran around the room because she couldn't smell them. They bought the pup in June 2010, after their 14-year-old Corgi died.

It's normal to wonder how two people endure such an ordeal. Their mindset? "You knew that you had a chance," she says, "or you were going to suffocate, similar to drowning in slow motion. But you have a chance and a life to live -- that takes away the doom and gloom."

In the end Linda views the experience as "a love story -- heartaches in the beginning, but we stayed positive. We put the negative energy in a box and threw it away."

And took a deep breath.

Executive Editor Mike Tharp can be reached at (209) 385-2456 or mtharp@mercedsunstar.com

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