The following article was first published on the AIRWAVES website, January, 1999
WELLNESS, NOT REHAB, FOR COPD
By Bill Horden
"COPD" is your doctor's shorthand for "chronic obstructive pulmonary disease," a disease the American Lung Association calls "the fourth leading cause of death, and the third leading cause of disability, in the U.S."
I've got it.
And I've had it for 20 years.
I'm 69 years old, retired from a sales and marketing career, and married, with five offspring and seven grandchildren. And I need supplemental oxygen 24 hours a day. While I am "handicapped," and limited in both endurance and speed, I haven't stopped living. Thanks to a pulmonary rehabilitation program I completed three years ago, and to a continuing exercise program, I am able to do many things that once I could only hope for -- like shopping with my wife, cooking a meal, and toweling off after a bath.
The Internet has been another valuable source of support, for it has allowed me to find and "talk" to scores of other pulmonary patients. We've had to accept the fact that, try as they might, even those closest to us can't quite understand how much effort it takes to walk across the room or dress ourselves -- or just to breathe. Few of us have found a local support group of substance; most groups are superficial or meet only infrequently. So we use the computer to compare symptoms and therapies and, from time to time, to speak openly of our fear, despair, frustration, guilt, and loss of self-worth.
I'm convinced that long-term care for COPD patients must evolve from "rehab" to "wellness." We desperately need a continuing program of therapy and education to 1) improve our pulmonary and general health, relieve symptoms, and reduce hospital admissions; and 2) lengthen and improve the quality of our lives, give us the courage to again take control, and to play an active role in the management of our treatment.
My ideal COPD wellness program would couple weekly physical and pulmonary rehabilitation with the fostering of stable "peer-support" groups. Patients would participate long-term, in the same way we stay on maintenance drugs for life.
The specific goals of a wellness program for COPD patients should be to:
- Improve strength, endurance, and confidence through ongoing physical therapy.
- Educate about COPD and the proper use of medications, to better empower patients to cope with episodic problems and fears.
- Monitor patient progress and detect complications early, allowing prompt intercession and avoidance of crises and hospitalizations.
- Create a stable group environment that encourages patients to create strong, lasting bonds, which will help them better deal with counterproductive emotions, radical changes in their lifestyles, disappointments from earlier "treatments," and the specter of further incapacitation.
Together, these strategies will help motivate many patients to expend the energy and the emotional resources essential to self-management of a chronic disease.
The value of such an approach has been proven by a recent study at the National Jewish Medical and Research Center in Denver. It found that two groups of asthma patients who completed a six-month "disease-specific case management" program required 50 percent and 72 percent fewer hospitalizations respectively, made 61 percent and 77 percent fewer emergency-room visits, and reduced lost work or school days (including both patients' and caregivers' days) by 68 percent and 81 percent.
The study suggests that the annual per-patient cost of my proposed weekly COPD wellness program would be far less than the cost of even one hospitalization. Savings on emergency-room visits alone could finance the program. Such a program should be supervised by a pulmonologist and conducted by respiratory therapists, with monthly reports (and immediate reports of any problems) going to each patient's individual physician. These reports would also offer a sound basis for developing "outcome data" (information on how well patients respond to treatment), which could in turn be used to improve overall care.
Many respiratory therapists share my conviction that the success of any program of pulmonary therapy depends as much -- or more -- on helping patients deal with their feelings and develop a hopeful attitude as it does upon purely medical and physical treatment. In the absence of such emotional and psychological support, COPD patients are much more likely to just give up, vegetate, and await the inevitable, ugly "end." Most pulmonary patients I've met on the Internet are yearning for at least a few more years of relatively active life. Given reasonable hope and meaningful support, we will spend the time, do the work, and practice the discipline necessary to achieve that goal.
I'm An Addict!
1998, by Bill Powell
Ever since the doctor whapped me on the butt almost 65 years ago, I have been addicted to oxygen. When I first started out and for the first 63 years of my life, the oxygen content in air, which I understand is in the neighborhood of 21%, was perfectly fine. Even though 40 years of smoking caused a deterioration of my lungs, the Maker gave enough flexibility in my physical makeup to continue to feed my addiction at a satisfactory rate with that 21%.
However, a little over a year ago, my body said, "Enough is enough, if you want me to continue to get out of the bed and off your back, you are going to have to supplement the 21% with a little extra." Now my body continued, "Also, Bill, since you have been so abusive to me, I am going to make it even harder for you -- I am also going to make you a 'retainer' so you are going to have to be careful with that oxygen level so that your CO2 will not build up too high."
Now, you may not believe this, but when I next visited my doctor, he said essentially the same thing. (Fortunately I had picked out a great doctor and had a good rapport with him because I had read Bill Horden's COPD Survival Guide. The Impatient Advocate
The doctor of pulmonary medicine did say that I should use the oxygen as prescribed and treat it like I would any other prescription or therapy because that is what it is. He also gave me the amounts that I should use when at rest, during activity, and at night when I wear a BiPap to control my breathing and keep the CO2 levels down. He also advised me that I should not do either of two things, First, stray from the guidelines he had established for me because, particularly for retainers, too much oxygen is not good for me and secondly, don't try to reduce the level of oxygen without consultation with him in order to reduce the addiction. As he explained, "Everyone is different and we must proceed with a structured plan that will work for you. It is a lot like smoking. Trying to cut down just does not work for most folks so if I am going to continue to get these big bucks for treating you, why not listen to what I have to say?"
So now I am fat, dumb and happy with my hose in my nose 24/7 and reasonably healthy but definitely still addicted to oxygen.
Regards,
Bill Powell