The courage to breathe

Chatham woman offers heartfelt advice to others diagnosed with chronic obstructive pulmonary disease

By Robin Lord, Staff Writer

(From the Health & Medicine Page, Cape Cod Times; reproduced with permission)

Chatham - Jo-Von Tucker holed up for days in her New York City apartment after she was diagnosed in 1989 with chronic obstructive pulmonary disease.

Suffering from all three of the afflictions that make up COPD - emphysema, asthamtic bronchitis and chronic bronchitis - she had been told by doctors that she probably had less than five years to live.

Tucker responded to the diagnosis with an about-face from her usual frenetic and upbeat life as an international direct marketing consultant. She refused all calls and spiraled into despair.

But eventually she gathered strength from a strong spiritual base and supportive family members and friends, and today operates a successful clambake mail-order business while coping with the challenges of an often fatal disease.

Tucker attributes her current success at dealing with COPD to a strict adherence to doctors’ orders, exercise and good nutrition, an active lifestyle, and the tireless pursuit of information.

She has taken that knowledge and experience and, together with two doctors, Brooke Nicotra M.D. and Rick Carter Ph.D., put it into a 245-page book for fellow COPD victims, called "Courage and Information for Life with Chronic Obstructive Pulmonary Disease."

The comprehensive, easy-to-read 8 1/2 x 11-inch book, published by New Technology Publishing in Onset, deals with every aspect of the disease from the doctor-patient relationship to maintaining a satisfying sex life.

The book includes tips on everything from how to cope with depression to how to cope with nasal cannulas, the clear oxygen breathing tube that fits over the ears and runs into the nose. “The more educated, the more compliant and the more confident patients are,” said Tucker recently at her office at Clambakes Celebration on Route 28 in Chatham, “the longer they’re going to live. In order to live successfully with it, you’ve got to be educated. Hopefully, this book will do that.”

Tucker has received hundreds of letters and e-mail messages about the book since it was published in October. A review written in the Pulmonary Education and Research Foundation newsletter said, “Jo-Von is one gutsy lady who speaks from the heart. She writes with the narrative skill of a best-selling author.”

Long-term smoking a culprit

COPD generally strikes after the age of 55. Victims have one, two or all three of the diseases associated with it. All three maladies have a common trait: persistent difficulty in getting air to flow out of the lungs normally. Because of this problem, the blood being pumped into the body is oxygen depleted, leading to extreme fatigue and shortness of breath.

A long-term smoking habit is the leading cause of COPD in an overwhelming number of patients. In fact, 98 percent of COPD sufferers were smoking at one time. Tucker smoked for 30 years, but had not smoked for two years before her diagnosis.

She was 52 and facing surgery for what her New York City doctor had told her was probably lung cancer when she decided to get a second opinion. Worn down from a six-month bout with pneumonia, she knew her body would never survive surgery. So she flew to Denver, Colorado, to the National Jewish Medical and Research Center to get to the bottom of her problem.

Based on her symptoms and some test results done in New York, doctors at the research center already had a strong suspicion that Tucker was suffering from COPD. Knowing how the thin Denver air would affect her, they had an oxygen tank waiting for her when she got off the plane. She has not been without one since.

COPD is diagnosed via a number of tests, including chest x-ray, breathing tests, arterial blood gas, electrocardiogram, and an exercise designed to quantify oxygen levels.

After a week of such testing, Tucker was given the grim diagnosis with a five-year life expectancy. The doctors wanted her to stay to begin a physical therapy regime, but Tucker said all she could think of was fleeing.

“I felt my life begin to slip away. I now had a chronic illness, and would be disabled for the rest of my life,” Tucker wrote in her book. “I reacted to the diagnosis the way most patients do. I isolated myself. I truly thought I was in the process of dying.”

But somewhere along the way, Tucker decided she was not going to give in to that notion. Having access to one of the biggest libraries in the world in New York, as well as hundreds of bookstores, she read all she could on the disease. She found that while there was information on each COPD disease, there was nothing written in plain prose to tell the patient how to deal with the disease.

“From the time I was frantically running around New York City, I knew I had to write this book.”

Physical fitness a key to health

Tucker is clear on why she has not only survived but thrived since receiving her diagnosis.

“Staying physically fit is the key,” she said. Ironically, what your body most wants you to do, sit back and give in, is the worst thing COPD sufferers can do. With specially designed breathing and physical exercise, the body is better able to resist the disease’s affects.

“When I first got diagnosed, I couldn’t talk a full sentence without losing my breath,” she said. Today, unless she has just done some mildly strenuous exercise, like walking upstairs, Tucker speaks with little effort.

The goal of every COPD patient is to maintain the status quo because COPD is a progressive disease which eventually renders the lungs unable to sustain enough oxygen in the body.

“You want to maintain a stability because then you’re winning,” said Tucker.

Staying sociable is another important factor in dealing with COPD. Again, it is often the thing sufferers least want to do. Isolation is typical because of depression, fatigue and embarrassment at having to walk around with an oxygen tank and cannulas.

Dealing with strangers can also be hard, said Tucker. Several people have hinted that she has no one to blame for her condition but herself, including a restaurant host when she asked to be seated in the non-smoking section.

To combat her desire to isolate herself, Tucker started a support group for COPD sufferers nine years ago. The group now has 185 members, has monthly meetings and publishes a newsletter.

Working has also been a godsend, she said, since it not only forces her to get out of the house every day, but gives her a reason to get out and about. She operates her clambake business with her daughter, Tracy Rolsten, and granddaughter Shelby Rolsten often helps out.

COPD patients face a daily challenge to feel optimistic about their lives, said Tucker.

“Depression is a big part of it. It sneaks up on you. For me, I go through it every time I realize another thing I can’t do,” said Tucker, who vacationed all over the world before she became ill, trekking in the Himalayas, white water rafting out west, taking a photo safari in Africa.

She faces her own mortality daily when she reads the obituary page as part of her Cape Cod support group duties. In the last nine years, the group has lost 36 members.

“The emotional aspect of this disease is incredible. You’re grieving for your own body,” said Tucker. But with support, education and a certain amount of resignation, the grief can be managed, she said.

“Go in search of renewal and rediscovery each day,” advises Tucker in her book. “Make it a quest, an objective to look forward to each morning. Let positive emotional states lead you towards accepting coexistence with your illness. Then you’ll find peace.”

Advice for living with COPD

Copyright 2000 Cape Cod Times; reproduced with permission

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