My library contains dozens of booklets and papers which discuss COPD and many of its 150-plus component disorders like emphysema, chronic bronchitis, bronchiectasis and cystic fibrosis.

It’s obvious that each manuscript was written by a highly qualified specialist because the authors all have initials after their names, like MD, PhD, RN, RRT, MEd, and even FACP. You just gotta be impressed by the credentials, got ta you?

I have a bit of a problem being impressed by the writers and their works, however, after I study them. An essential element of treatment has been overlooked, I believe. What’s missing is that none of these writers has a real notion of what it’s like to be a patient with a serious pulmonary disease. There’s little in this literature to encourage hope or self-reliance. That’s what prompted me to undertake my own project, the creation of The COPD Survival Guide.

I am not a doctor, nor a medical professional of any type. But I am a survivor and a long-term COPD patient, and I feel eminently qualified to dispense advice on some aspects of the treatment and management of COPD.

Known vs Unknown

You medical people know COPD stands for chronic pulmonary disease, but I'd like to discuss with you what COPD isn't:

• it isn't a death sentence
• it isn't untreatable
• it isn't necessarily progressive
• it isn't necessarily crippling
• it isn't a single disease, so it never affects two patients in exactly the same way.

These observations are supported by the fact that I'm now 68 years old and I feel better, eat better, and am happier and more active today than I was two years ago.

I attribute my improved condition to excellent specialized medical advice, participation in a an effective, multidisciplinary wellness program, and the fellowship of a positive support group coupled with my personal commitment to expend the effort needed to get results.

First, COPD demands the services of a pulmonary specialist and a respiratory specialist to assure the patient gets the correct diagnosis and treatment. Too many GPs and Internists are conditioned to think, "It’s COPD," prompting them to off standard off-the-shelf advice. "You have an irreversible and untreatable lung disease..." they explain. That spiel ends with something like, "I'll prescribe something that will make you more comfortable. And I'll give you a pneumonia vaccination. And be sure to get a flu shot every year because you are in a high-risk group now."

To look at COPD as a specific illness is as illogical as considering all fractures and all tumors to be alike. The correct terminology should be, "A form of chronic obstructive pulmonary disease." The suggested course of treatment should be based upon appropriate diagnostic tests and evaluations, including a pulmonary function test.

Fracture and tumor treatments require X-rays, MRIs, CTs, and often demand the advice and services of two or more specialists

Why should COPD patients receive a lesser level of care?
Secondly, rehabilitation/wellness programs should employ a multidisciplinary team including pulmonologists, respiratory therapists, physical therapists, pharmacists, dietitians, occupational therapists, and psychologists. The program needs to be long enough (six to eight weeks) so participants can achieve measurable success. If such programs are not available, the patient may need to enroll in the less-intensive ones available, but should push his doctors, the hospitals, and the insurers, to provide more.

Avoid Negativity

Third, patients need involvement in a support group. Ideally, this group would meet once or twice a week for an hour or two, each session. Activities should include exercise, fellowship, education, and the personal attention of one or more therapist. And the mood must be positive. That’s often difficult to achieve because the patient has good days and bad days (and maybe some really bad days) and find it difficult to focus of the progress he has made.

Negative talk and complaining is contagious, so avoid it. Concentrate on the positive, like trips being planned, new ways to make routine tasks easier, and similar topics.

Fourth, patients must understand the purpose of each medication prescribed and must take it as instructed. The therapist and patient may work with the doctor to adjust dosages for optimal benefit, but no arbitrary changes are acceptable. The patient should not abuse the drugs, no fear "a dependency." If they help, the patient will be on them for life, and glad he is.

Fifth, the patient must learn new breathing techniques, including pursed-lip breathing and diaphragmatic breathing. Once he understands their benefits, he must get off his back-side and engage in regular exercise. As you therapists know, it’s best to start out slow, but each week should show improvement over the last.

Finally, the patient should get to know himself and his emotional strengths and weaknesses, and there is nothing productive in wallowing in self-pity. While there may be no cure for COPD (in any of its forms and combinations) its progress can be slowed and many of its negative effects reversed. With proper medication, participation in an aggressive rehabilitation/wellness program, and the right attitude, most patients will regain some of their lost functions and enjoy a happier and more productive life.

It is critical that the patient understand that, should his doctor not support the desire to get into a rehab or wellness program, they should change doctors. If they get nowhere with the second doctor, go to a third, or even a fourth. The patient has a right to expect aggressive treatment of his condition. If he didn't get it at one place, go somewhere else.

This article is excerpted from the "COPD Survival Guide"
and appeared in the March 23, 1998 issue of Advance magazine.

For the full text of "A COPD Survival Guide,"
click here The Impatient Advocate