- The Washington Times - Tuesday, September 11, 2001

Charlie Tolchin's life story is a cliffhanger.Mr. Tolchin, a District resident, had a double lung transplant four years ago in April 1997. Last year, he wrote a book about his experience, called "Blow the House Down," at the time the only published account from a patient's perspective of what it is like to undergo the procedure as a victim of cystic fibrosis — a disease for which there is no cure.

Now 33, Mr. Tolchin is a fully functioning adult who works in the advertising department of AOL Time Warner. His surgery was one of only an estimated 1,500 double-lung transplant operations done worldwide to extend the life of "CF" patients in the past decade.

"I'm a lucky guy. That's the bottom line," he says. "Every time I go to an event — a buddy got married this April — you can tell nobody thought I would be there. Those are things that are just great to go to."

A total of 12,000 patients around the world have been given two new lungs from organ donors for a variety of reasons, says Dr. Robert Aris, medical director of the lung transplantation program at the University of North Carolina in Chapel Hill where Mr. Tolchin was treated. Upwards of 80 percent of the operations have been performed in this country, where there are now 150 medical centers — including Inova Fairfax Hospital — doing the procedure.)

The five-year survival rate for lung transplant patients is 55 percent, Dr. Aris says, with the longest successful patient alive after 15 years. Without such drastic intervention, the choices for CF sufferers in latter stages is "death within days or weeks," he says. "Even though it [the operation] is not perfect, most people go for it."

In Mr. Tolchin's case, he went for the procedure without knowing whether a lung donor would be found in time and whether his body would accept the new organ and, if so, for how long. (His book is dedicated to his donor, a 13-year-old girl killed by a hit-and-run drunken driver.)

When he was first diagnosed with CF at the age of 5, he wasn't expected to live past age 8. His mother, Susan Tolchin, a professor of public policy at George Mason University, had taken him to as many as eight pediatricians before doctors at Johns Hopkins correctly identified the disease.

"Of course, that was devastating to us," she recalls.

Parents carry the genetic strain for the disease that involves both the respiratory and digestive systems. The Tolchins didn't know they were at risk.

"We might not have gone ahead to have another child if we had known," she says. A second child, Karen, is now married and a professor of English at Nova Southeastern University in Fort Lauderdale, Fla.

According to the Mayo Clinic Family Healthbook, cystic fibrosis is the most common fatal hereditary disease in white children in the United States, affecting one in every 2,000 infants, and is one of the most common causes of chronic lung disease in children. Advances in medical science now give sufferers a life expectancy of 31 years or more, helped along by the Bethesda-based Cystic Fibrosis Foundation's education and fund-raising efforts and parents like the Tolchins determined to improve treatment methods.

When the decision was made to go for a transplant, family life turned around completely, resulting in a move to Chapel Hill off and on for five months to help prepare their son for the transplant. Charlie Tolchin's black standard poodle Bogart came along, too. The extended family by then had grownenormously, encompassing myriad other patients and caregivers.

(Susan and Martin Tolchin's next book, their sixth shared byline, is dedicated to Dr. Milica Chernick, the head of the Cystic Fibrosis Center at the National Institutes of Health, where their son was treated. Martin Tolchin, Charlie's father, is a former New York Times reporter and is publisher of the Hill, a weekly newspaper about the doings of Congress and Capitol Hill.)

Charlie Tolchin met his challenges in fighting spirit. Six days ahead of the operation, when he was first on the list to receive the next available organ, he was playing ice hockey. Early on, encouraged by Dr. Chernick among others, he had begun pursuing a vigorous program of physical activity, including weight lifting, in part to strengthen himself for the ordeal ahead but also to keep himself busy and engaged in the world.

"I waited 28 months," he recalls. "They were anticipating about 18 months. I've heard of people waiting 40 months, even five years. It's a time when you don't feel good, and I think the folks at North Carolina did a great job timing things. I went in [to the operation ] healthy. The program there encourages you to keep active.

"You do all you can when you can. You work out when you feel healthy and reap benefits when you don't feel good."

Mr. Tolchin credits his family, too, for encouraging him as child to participate in sports, buying him weights, and "finding doctors who shared that vision."

Even so, as he writes in the book, which is based on his medical records as well as personal datebooks and family recollections, there was a 24-hour period following the 12-hour transplant operation — his first time ever in a hospital for major surgery — when it wasn't clear if he would make it.

"You go in thinking, 'My life will be so much better, no doubt about it,'"Mr. Tolchin says.

Fortunately, he was well anesthetized at the time and then hospitalized for 17 days. He didn't return home to Washington for three months and was on a heavy regimen of drugs that continue in ever diminishing fashion to this day.

The book has brought him into contact, mainly through e-mail, with legions of people seeking advice or wanting to share thoughts. "Even people going through something totally different, like a divorce. They say it makes them think they can get through something really hard," Mr. Tolchin says. He regards the book as "being able to give a tiny bit back. I received so much."

Among those he calls his "amazing role models" are other successful transplant patients such as the friend who calls to tell him when a dose of medicine has been lowered even more and that he can expect the same.

One of the lessons he learned from the experience, Mr. Tolchin says, is "the huge impact each individual can have, whether it's raising money for medical research for any disease you care about. Just writing a check or going to an event. I feel like a beneficiary far more than I could ever give back. Think about the scientists that led to these breakthoughs and made life expectancy change."

A graduate of George Washington University with a major in business, Mr. Tolchin had taken a year off from college in 1988 to help start a pharmacy program at the Cystic Fibrosis Foundation for whom he now acts as volunteer "cheerleader" and speechmaker. Foundation President and CEO Robert Beall calls the remarkably upbeat Mr. Tolchin "an inspiration. He obviously has his ups and downs, but he really does provide a reservoir of hope to parents and patients."

Mr. Tolchin is enough of an inspiration, apparently, that Abe Pollin invited him one year after his transplant to throw out the puck for the first Capitals hockey game at the MCI Center. A photograph on his apartment wall shows a smiling Mr. Tolchin between Mr. Pollin and former Vice President Al Gore, Mr. Tolchin's cheeks puffed up from recuperative drugs. And a photograph of Mr. Tolchin hangs in the lobby of the new NIH hospital in Bethesda,as one of only two patients invited to speak at the groundbreaking. (The other was a breast cancer survivor.)

"My life is a tribute to federal research," he said at the time.

"He is really just a tremendous human being," Dr. Aris says. "He is a great guy. The medical community would roll out the red carpet for him."

In addition to being monitored by his local pulmonologist, Mr. Tolchin makes a yearly trip to Chapel Hill for a check-up and picnic with other transplant survivors.

A visitor to Mr. Tolchin's bachelor digs in Cathedral Heights these days is greeted by a mellow hand-licking Bogart and the apartment's smiling 130-pound 5-foot 6-inch bald owner, his weight down and hair gone temporarily in the wake of a series of chemotherapy treatments to stop a newly developed cancer tumor.

Lymphoma tumors are common after transplants, says Dr. Aris but Mr. Tolchin's has an unusual kind. Triggered by a virus built into the transplanted organ, they take hold because the body's resistance is lowered by all the immunosuppressant drugs needed to prevent the body from rejecting the new organs.

He was having digestive problems late in May and thought it was a stomach virus until a CT scan showed a large mass above his liver. It was his first big blow since returning to what for him is normal life. Chemotherapy revived him with surprisingly few side effects. That cut out the hockey games, temporarily at least, but the ever-optimistic Mr. Tolchin is plotting to get back to the sport that he plays as an avid amateur as soon as the doctor says it's OK.

"This cancer is just one thing to deal with," he says, smiling. "There are just always things."

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