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The COPD Advocate    A COPD Survival Guide
Rev. 4.0, Copyright 1997, 2000

Introduction
My library contains dozens of booklets and papers that discuss COPD and many of its component and similar disorders (such as emphysema, asthma, chronic bronchitis, bronchiectasis, cystic fibrosis, etc.) and their diagnosis, prognosis, and treatment. Each was written by an obviously highly qualified specialist. One knows that because the author has two or more initials after his or her name, like M.D., PhD, R.N., P.T., R.R.T., B.S., M.S., M.Ed., N.S., and even FACP and PCNS. With these credentials, you just gotta be impressed, donít you?

Well, I have a bit of a problem being impressed by these writings because, despite the authorsí obvious medical competence and careful attention to clinical detail, when I studied these works, I thought an essential element of treatment had been overlooked, and I began to suspect that most of the writers hadn't the foggiest notion of what itís like to be a patient with a serious pulmonary disease. The more I read, the more certain I became that a purely clinical approach wasnít enough.

Thatís what prompted me to undertake this project.

I am not a doctor, nor any sort of "medical professional," but I am a long-term COPD patient...and I am a survivor...so I feel eminently qualified to dispense advice on some aspects of the treatment and management of COPD. Iím certain my observation and opinions can help some of my fellow patients.

Iíd like to think the better practitioners will listen, too.

COPD Stands for Chronic Obstructive Pulmonary Disease
Since Iím taking a contrary point of view from other writers, it seems to make sense to enter by the back door, so the first thing Iíll discuss is what COPD isnít:

  • It isnít a death sentence.
  • It isnít untreatable.
  • It isnít necessarily progressive.
  • It isnít necessarily crippling.
  • It isnít a single disease, so it never affects two patients in exactly the same way.
These statements are based upon my personal study, my personal experience with COPD, and my observations of other patients who were privileged to participate in the same therapies as I. They are supported by the fact that Iím now sixty-nine years old and Iíve felt better, been more active, eaten better (and been happier) the last three years than at any time during the preceding three or four.

My improved condition is directly attributable to excellent specialized medical advice; participation in an effective, multi-disciplinary wellness program; the fellowship of an active, positive support group, and; my personal commitment to the effort required to get results. I chose the words in that statement carefully: I elaborate to make my points clearer:

  1. COPD (or any chronic pulmonary disease) demands the services of a Pulmonary Specialist (and a Respiration Therapist) to assure the correct diagnoses and treatments. Too many General Practitioners or Internists seem to be conditioned to think "itís COPD," which prompts them to then offer their standard off-the-shelf advice, "You have an irreversible and untreatable lung disease..." a spiel that ends with, "Iíll prescribe something that will make you more comfortable. And, oh yes, Iíll give you a pneumonia vaccination, and you be sure to get a flu shot every year, because you are in the high-risk group now." This happened to me often, over many years...and to most of my acquaintances and correspondents. Yes, itís the way most doctors think. Looking at COPD as a specific illness is as illogical as considering all fractures or tumors to be alike. The correct terminology should be "a form of Chronic Obstructive Pulmonary Disease," and any course of treatment for COPD should be based upon further d
  2. Diagnostic tests and evaluations, including a Pulmonary Function Test (PFT), as fractures and tumors may require X-rays, MRIs, or CTs to diagnose and treat them properly, and may often demand the advice of two or more specialists.
  3. The optimally effective Respiratory Rehabilitation or Wellness Program will be multi-disciplinary, and will employ the services of Pulmonologists, Respiratory Therapists, Physical Therapists, Pharmacologists, Dietitians, Occupational Therapists and, perhaps, Psychologists. The program will be of sufficient duration (six to ten weeks) to allow participants to achieve measurable, noticeable success. If no such program is available, the patient should enroll in one of the less intensive rehabilitation programs that are offered, but should then push his doctors and hospitals (or clinics), and insurance company to do more and, meanwhile, work independently to fill in the missing facets. There are some supplemental resources available to you. (See my Research Materials List.)
  4. Once you finish your Wellness or Rehabilitation Program, you should get involved in (or form) a Support Group. Ideally, it should meet at least once a week, for one or two hours per day, for exercise, fellowship, education, and the personal attention of one or more therapist(s). The attitude of participants must be positive. Though it often seems difficult to be upbeat when all the participants are "sick," youíve got to accept the fact that youíll each have some bad days (and maybe some really bad days), and discipline yourselves to concentrate on the progress youíve each made since starting your therapy. Youíll also learn that negative talk and complaining is contagious, so youíll avoid it and steer the talk to news about your families (try to get spouses and children to attend from time to time, too), trips youíve made or are planning, new ways youíve discovered to make day-to-day tasks easier, etc. If some member persists in dwelling on the negatives of life, you might want to take it as a challenge to give him or her some special attention.
  5. Take all medications as prescribed, and learn the purpose of each. In this way you can better work with your doctor to adjust dosages for optimal benefit. And donít fret about becoming dependent upon such drugs. If they really help, youíll be taking some of them all your life but, so long as you donít abuse them, itís no different than being "dependent" upon food or water.
  6. When at home, practice pursed-lip and diaphragmatic breathing techniques and get on your feet and do something. It wonít be easy, and sometimes it may seem impossible, but itís absolutely essential that you get more and more exercise. Itís okay to start out slow (especially if, like me, you were a couch potato) but you must do a little more each week than the week before. Itís a critical element in your path to success and to your mental attitude. Should you honestly try, but find you canít, tell your doctor or therapist; they may offer different medications or exercises.
  7. Get to know yourself, and your emotional strengths and weaknesses. Having a chronic, life-altering disease is stressful: if you are going to cope with it and have reasonable quality in your life, youíll probably need to be painfully honest with yourself. Iíll say more on this, later.
Now, for the benefit of the spouses, other interested family members, and all those patients whose doctors have been too busy to explain it in English, Iím going to tell you everything else you need to know about COPD:
  1. "COPD" is used by the medical profession as a catchall acronym for any combination of a large number of diseases that affect the respiratory system (windpipe, lungs, and bronchial tubes). It may include asthma, bronchitis, emphysema, bronchiectasis, and other, even more rare diseases that obstruct the airways and interfere with breathing.
  2. Because doctors have labeled COPD as "chronic," most do not consider the patientís condition to be "acute" and, therefore, give itís treatment no urgency, regardless of the patientís discomfort or concern. (I donít have to tell my fellow sufferers of the discomfort, frustration, and downright fear the disease engenders: itís pretty bad, no matter how brave a front is put up.)
  3. No two COPD patients have identical "diseases." In one, the most serious component will be emphysema, in another it could be asthma and, in a third it might be chronic bronchitis. Such differences require individualized programs of medication and therapy, but all COPD patients share some common problems (though in differing degrees), such as shortness of breath, cough, and some degree of emotional stress. Many also experience allergic reactions and develop circulatory and/or cardiac difficulties. Without the information provided from a PFT, your doctor is "shotgunning" his approach to your treatment.
  4. While there may be no real cure for COPD (in any of its many forms or combinations of diseases) its progress can be slowed and its effects reversed. With proper medication, aggressive rehabilitation, and the right attitude, most patients (regardless of age) can regain some lost functions and enjoy a happier, more productive life.
  5. If your doctor wonít support your desire to get into a wellness or respiratory rehabilitation program, or doesnít treat your fears or depression as being important, insist he or she discuss it with you further (if you are reticent to confront him or her, ask your spouse or other family member for support) and, if that doesnít get results, change doctors. You have a right to expect aggressive treatment of all facets of your disease!
  6. As I said before, there are many elements essential to an effective Respiratory Rehabilitation or Wellness Program, but the most important of these is the patientís willingness to work at getting better. There are surgical procedures, such as lung volume reduction surgery (LVRS) that promises some degree of relief (with rather significant risks) to the few patients who are considered "good candidates," or lung transplantation (which is, of course, subject to the availability of donor organs), but these procedures are generally considered to be experimental, are expensive, and/or are not readily available. A sad fact of life is that most COPD patients will not find a magic elixir in a medicine bottle or a quick fix in an operating room; their improvement will have to come from learning as much as possible about their specific disease and then developing the determination to do the work required.
  7. The last thing you need to learn is that COPD is treatable and manageable. Forgive me if that seems redundant, but itís important to both emphasize the point and to distinguish between "treatable" and "manageable." Doctors, therapists, and other health professionals can provide the "treatment;" the patient must provide the management."
This Survival Guide aims to help you manage more successfully.

If it isnít obvious by now, let me say, loud and clear, "Iím an enthusiastic advocate of Pulmonary Wellness and Pulmonary Rehabilitation Programs and I urge all patients with any chronic pulmonary disease to insist that his or her doctor investigate and utilize such treatment programs." (I sometimes refer to myself as "a volunteer Patient Advocate;" it would be more accurate to say Iím an Impatient Advocate.) This "Survival Guide" is not intended to substitute for professional teaching and/or treatment. Itís purpose is to assist you in obtaining, understanding and using professional help to your greatest advantage.

But why does COPD affect me this way?
Bacon is credited with first saying, "Knowledge itself is power." If you are to gain the power to overcome some of the hold COPD has on you, you need to know the enemy. It isnít enough just to follow instructions, you must understand the reasons behind them.

Your heart and lungs are the only major organs contained in your chest. They are protected by your ribcage, and separated from your other organs by the diaphragm. You might say that it is the job of the heart and lungs to provide an adequate supply of blood to the rest of the body, but that would be an oversimplification: the heart and lungs must deliver adequate blood with a good supply of oxygen in it, and the hitch is that the amount deemed "adequate" is changing constantly, depending upon how hard we work, play, or think. At the same time it is delivering oxygen around the neighborhood, your blood is picking up carbon dioxide, water, and heat, which the lungs must then eliminate from the blood. (Other waste products of metabolism are eliminated by the liver, kidneys, etc.)

The heart and lungs work together to exchange gases (including water vapor) between the blood stream and the air we breathe in and out. The harder your body muscles work, the faster your heart beats and the harder (and faster) you breathe. You breathe in cool air that is rich in oxygen, and you breathe out warm air thatís high in carbon dioxide and water.

At least, thatís how your heart and lungs used to work.

But, now your lungs are too slow in exchanging oxygen between the blood your heart pumps and the air you inhale, and they donít dispose of carbon dioxide efficiently, either. You are short of breath, gasp for air, cough, and perspire profusely. Your heart beats faster and harder than ever before, but it still cannot meet with the demands of your body.

No matter how you try; no matter how you command your lungs to work better, or your heart to slow down, you can no longer deny it: you have a problem. A serious problem. A very frightening problem.

You have COPD.

Sometimes I feel like crying.
At some point in a Wellness Program, and in some Rehabilitation Programs, someone will address the subject of "Stress." They may call it "Stress Management," as they did in the 60ís and 70ís, but when that person addresses a group of COPD patients, I feel it would be far better to drop the euphemisms and talk openly and candidly about the fear, depression, anger, resentment, frustration, and loss of self-esteem most of us struggle with at one time or another, and teach us that success in coping with these emotions may well be the single most important element in the management of our disease.

Few medical professionals know, first-hand, the frustration of being so short of breath you can barely make it to the bathroom and back, or how difficult it may be to towel-off after a bath, or how it feels to be dependent upon a little plastic tube you must wear in your nose and drag behind you everywhere you go. And I bet they canít imagine how tears come to your eye when you remember the way you used to get your work done in an orderly fashion and reasonable time, or how well you bowled or played softball, or the last time you danced across the floor with your spouse or grandchild in your arms. Do they understand that you canít breathe when you lie down, so you must spend your nights in a chair; and what itís like to now need from others the help you were always the first to offer to them?

Luckily, most people have been spared the feeling that comes with the closing-off of your throat that makes you clutch your breast and gasp for breath and fumble for an inhaler, and the mounting fear that compounds the problem, as you anticipate it getting worse...so bad you may be in the Emergency Room...again.

I could expand on this by mentioning the deep depression that causes some patients to give up on their therapy or quit (or conveniently "forget") their medications, or to continue to smoke, because "it doesnít really matter, now that the damage has been done." I might mention the problem of self-esteem (or vanity) that keeps some patients from taking needed medications, or using their oxygen units in public. And I could address the many times a patient asks his God, "Why me?" But I think Iíve made my point: there are many emotional problems a COPD patient must overcome daily, and he needs encouragement to do it. A good Pulmonary Rehabilitation or Wellness Program will address this need. Itís why I keep saying, "Accentuate the positive and eliminate the negative," and, "Find a doctor who will work with you and support your efforts." Itís why I say, "Get into a Support Group." Itís why itís so important to have the support (or nagging) of a caring family member or friend.

WARNING! While weíre on the subject of emotions and moods, Iíve got to warn against the temptation, when you are getting good results from your new medications and your improved diet, and your exercises, to alter the routine or skip a day. Remember, it was this regimen and this routine that produced the improvement: stay with it unless your doctor says otherwise. Donít let success ruin your good work. Ask your spouse, or other family member, or a good friend, to police you from time to time, and to kick your backside if you slack off your routine.

Dealing with negative emotions may be your greatest challenge, or it may be relatively insignificant, depending upon your individual personality, the severity of your disease, the progress you make during treatment, and the quality of the support you receive from family and friends. But if you feel youíre losing ground when fighting some emotional problem, seek out a Support Group, because you will get more positive (and more meaningful) feedback from fellow-sufferers than from those who can offer only sympathy, no matter how well-meaning they are.

If you are the type who would rather deny the need for emotional support (the typical male, in other words) you would do well to get over it, because itís almost certain that, otherwise, youíll cheat yourself of the opportunity to get the most from your Rehab or Wellness Program and, if you finish such a program, will invariable suffer setbacks or relapses.There is no shame attached to rational fear or apprehension, and some degree of resentment and anger should be understandable in anyone who finds himself or herself severely limited, especially when the mind is still active.

If you find you are severely depressed, say, "Iíve got a right to feel like this, but I know it can only hold me back," then get up off your duff and do something to make it better. If the feeling persists, tell your doctor; there are anti-depressants that may help.

Know that, in the successful management of your disease, your mental and emotional health is at least as important as any other facet of your Wellness or Rehab Program.

Whether you find an organized Support Group or not, seek out and make friends with two or more other respiratory patients and make it a point to have breakfast or lunch with them often, phone them regularly, and talk. And listen. Praise their efforts and celebrate their successes (no matter how small), and let them do the same for you.

What Happens In A Pulmonary Rehabilitation Program?
As Iíve said before, I am not licensed to practice medicine, nor to administer any of the therapies Iíve referred to above, so I canít tell you that any specific Pulmonary Wellness Program or Respiratory Rehabilitation routine is best for you; that must be established by the rehab team. I can, however, promise that you will benefit from such a program, unless your doctor determines that some other medical condition precludes your participation. I can also describe the program in which I participated and tell my reaction to each of its elements.

I enrolled in Class #3 of the Respiratory Wellness Program offered by St. Jude Medical Center, Fullerton, California, in September, 1995. Eight patients started the course; six completed it. Twelve patients had previously completed the course (Classes #1 and #2) and more than a hundred-fifty have since completed their matriculation. Approximately one-fourth were accompanied by a spouse or "significant other."

NOTE: Because of the significant Physical Therapy content of the program, Medicare and most HMOs and insurance plans paid a substantial portion of the cost: the hospital picked up the tab for the balance.

The St. Jude program consisted of eighteen three-hour sessions (three hours a day, three days a week for six weeks), which time was spent as follows:

  1. One hour each day was devoted to physical exercise, using stationary bikes, treadmills, upper-body ergonometers, or weights, after individual evaluations and in accordance with the patientís physicianís referral. At the initial session we each performed a six-minute walk to establish a baseline against which to measure improvement. Respiratory Therapists taught proper breathing techniques (pursed-lip and diaphragmatic breathing) and each participant was monitored for oxygen level and pulse rate while exercising and at rest. Weight and blood pressure were routinely monitored and recorded. I found the breathing techniques gave immediate relief to some of my symptoms and was amazed to watch, when hooked up to the instruments, to get immediate biofeedback and read their effect in actual numbers. The physical exercise was a real struggle for me because I had let myself get into very poor condition. During the third or fourth session, I suddenly realized how much one-on-one attention each of us was getting and how each patientís routine was customized to his/her personal condition, ability, and temperament. This period proved to be the best time for the patients to interrelate and bond.
  2. Two classroom sessions involved the use of the many medicines available for the treatment and management of respiratory diseases, and of the possible adverse reactions or interactions with other medicines. Patients were repeatedly cautioned to take all medications exactly as prescribed and neither add nor subtract without a doctorís orders.In addition to appreciating the repeated cautions, I found it helpful to learn how many of my prescriptions were "maintenance drugs," aimed at preventing a severe pulmonary "episode," instead of treating one, after it occurs.
  3. Two classroom sessions were devoted to the anatomy and physiology of the lungs and the nature of the diseases most commonly associated with "COPD." These lectures stressed the cause-effect relationships of the diseases and exercise, and the diseases and medication; and the close interrelationship between lungs and heart was explained. I had thought I knew all I needed to know in this area but found the details helped immeasurably...especially when I later developed some of the coronary side-effects we had studied. Even with this "knowledge," I must admit each coronary "episode" really frightened me, until my doctors found the right balance of medications to manage that new "challenge."
  4. Two sessions were spent with the Respiratory Therapists teaching us how to measure and monitor our personal progress using hand-held Peak-flow Meters and Incentive Spirometers, and the proper use of inhalers, using spacers for optimal effect. At the time, I thought, "This part is all mechanics and a real bore." Iíve since learned how every detail has significance. The mechanics of using the Peak-flow Meter helps me manage my disease better and monitor my condition objectively; this means I know when to take more of certain medication and when to get to the doctor for special attention. It also means, because the Peak-flow Meter is an objective indication of my present capacity, it is easier for the doctor to interpret the significance of my subjective description of my symptoms.
  5. The hospital dietitian took two hourly sessions to explain the need for good nutrition and the special considerations for pulmonary patients, such as eating four or six light meals a day to avoid the fullness that puts pressure on the diaphragm and makes breathing more difficult. We learned how important it is to drink plenty of fluids, be sure to get enough iron and potassium, and to avoid getting too much sodium. Time was also spent on finding foods that are easy to prepare, allowing the patient to conserve energy for more important tasks. This was another example of the importance of learning to better manage each detail of everyday living, even those we used to take for granted. It illustrates the totality of the effect COPD has on the lives of its sufferers and the need for a multi-disciplinary approach to such Wellness Programs.
  6. We spent two hourly sessions with the Occupational Therapist, learning how to conserve energy in our daily routines by planning our activities to minimize duplication of effort, organizing shelves and drawers to reduce the need to bend or climb about on stools, or using commercially-available aids for reaching, dressing, etc. I was amused, at first, to think, "First, the Physical Therapists encourage us to exercise and, now, the Occupational Therapist is telling us how to avoid exercise." Then I realized how little energy I usually have during any given hour or day, and how often I have to stop and rest. It makes sense! By avoiding unnecessary tasks, I have more energy for the things I want and like to do. The suggestion to buy clothes with elastic waistbands really helped me keep more comfortable, and wearing slip-on shoes was much more convenient than bending over to tie the laces.
  7. The session on Disease Management addressed the need to fully understand the nature of our personal situations, the proper use of medications, and the importance of maintaining meaningful communication with doctors, therapists, etc. I looked around the room and realized we had each gained the ability to overcome the fear that grips you when you think you have no control over your life...we could now see that we had tools to handle the "episodes" that once held us in a panic. Little by little, we were learning to accept full responsibility for managing our personal health...and our lives...and that no magic elixir or dramatic surgical procedure would make it all better.
  8. Another session was devoted to Stress Management and, as is the typical clinical approach, we were advised to try some "relaxation techniques," including controlled breathing, exercise, meditation, therapeutic massage, hobbies, and music. I must admit that I thought this stuff to be pretty superficial because I have a rather low tolerance for things I consider to be popular fads. Being inclined toward linear thinking, I usually prefer dealing with the source of stress, rather than treating the symptoms. Subsequent experiences and correspondence have made me appreciate that, like many other things in life, one is not necessarily crazy if he or she marches to a different drummer. The important thing is for you to understand that such stress is a normal situation, and then find the way best for you to reduce or eliminate its hold.NOTE: Like my opinion, St. Jude has since been modified its program to include other techniques for coping with our stress. Not the least of these is putting more emphasis on participation in a support group.
  9. One two-hour session was devoted to a review of the lectures, and another in a final exam of the lectures, after which each participant performed a six-minute walk. We were pleasantly surprised by the amount of new knowledge we had absorbed and by the measurable increases in our individual physical endurance. In only six weeks, some of us saw twenty to forty percent improvement.
We spent our final sessions in feed-back reports, verbal comments to the staff and the enjoyment of a potluck luncheon. by this time, we had developed a genuine affection for our staff, and many of us found we had become fast friends.

The following week, several of us began the weekly one-hour Support Group sessions where we could continue our physical therapy, get individual attention from the staff, and meet other alumni of the program.

Within a few months, we became the "old timers," as more and more classes were graduated and it became a matter of pride to set a good example, maintain a positive atmosphere, lend encouragement, and praise anotherís progress.

Summary
I kept the descriptions of the wellness classes brief because most of the data presented in the lectures is available from sources in my Research Materials List or are so complex as to require a separate paper to do them justice. The greatest value of the Wellness Program (other than the physical therapy, itself) came from the "question and answer" nature of the sessions; the fact that, with a small class, individual situations could be addressed, and; the emotional support the patients gave one another.

The main points I want to leave with you are:
 

  • find and follow the recommendations of a pulmonary specialist who knows the value of assertively attacking your disease.
  • take your medications religiously and record your Peak-flow Meter readings daily.
  • establish an exercise routine (with your therapist) and stay with the program for life.
  • learn and follow good dietary practices.
  • maintain a positive attitude and enjoy each day to the absolute best of your abilities (and share that attitude with at least two fellow COPD patients).
 

Would you please say that again Doctor?
The following statement was issued by the American College of Chest Physicians, Committee on Pulmonary Rehabilitation, in 1974. "Pulmonary rehabilitation may be defined as an art of medical practice wherein an individually tailored, multidisciplinary program is formulated which through accurate diagnosis, therapy, emotional support, and education, stabilizes or reverses both the physio and psychopathology of pulmonary disease and attempts to return the patient to the highest possible functional capacity allowed by his handicap and overall life situation."

Itís been over twenty-three years. Why are so few programs available?

Reference and Research Materials and Sources Available To You

  • The American Lung Association publishes several free pamphlets, including "Around The Clock With COPD," and "Traveling With Oxygen." Call your local chapter or 800/586-4872.
  • Boehringer Ingelheim Pharmaceuticals: a free booklet, "Save Your Breath, America!" Write them at 900 Ridgebury Rd., Ridgefield, CT 06877.
  • Pritchett & Hull Associates, Inc. 3440 Oakcliff Road NE, Suite 110, Atlanta, GA 30340: 800/241-4925: "To Air Is Human," $7.95 plus shipping.

I hope this "guide" serves to help some COPD patients and/or their families.

A COPD Survival Guide was written and published by Bill Horden, copyright 2000.
Permission to reprint may be granted upon written request and subject to certain conditions and restrictions.


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