COPD & Emphysema Support Group

COPD is a progressive disease characterized by airflow obstruction or limitation. Emphysema is characterized by loss of elasticity of the lung tissue, destruction of structures supporting the alveoli and of capillaries feeding the alveoli. Both have symptoms that include shortness of breath, among other respiratory troubles. If you are a COPD or Emphysema sufferer, join the group and find support.

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stomach cramps

I kept getting woken up last night due to painful stomach spasms, something I have never had before. Could it be the albuterol? I'm on my third day and really puzzled. I don't know if I expect too much, I still don't have the 'depth' of breath I did before! I asked if I could use it at bedtime to help me sleep through, and was told not to take it that late...I am confused!



something is very wrong with me. The pains have persited all day and now they are going down my arms, legs, neck, and two places on my back. I cannot quench my thirst and my temperature after aspirin is 101.8! I just got done with bad chills,under blanket now am burning up. I am very frightened because something bad is happening to me now. Could the inhaler give me infection symptoms? I hope someone out there can advise me, I am so afraid something bad has happened. help!

Albuterol won't cause those symptoms. You should get yourself to the doctor or urgent care. Take care and good luck!

Dear Friend;

When you are first diagnosed and for a period after things are all over the place most of which in the final analysis was down to stress and anxiety and not knowing which way to turn. Then I came on this article below that gave me a totally different and helpful outlook; trusting it does the same for you:


by Bill Horden


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, don't you?

Well, I have a bit of a problem being impressed by these writings because, despite the authors 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 its like to be a patient with a serious pulmonary disease. The more I read, the more certain I became that a purely clinical approach wasn't enough. Thats 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. I'm certain my observation and opinions can help some of my fellow patients. I'd like to think the better practitioners will listen, too.


Since I'm taking a contrary point of view from other writers, it seems to make sense to enter by the back door, so the first thing I'll discuss is what COPD isn't:

1) It isn't a death sentence

2) It isn't untreatable

3) It isn't necessarily progressive

4) It isn't necessarily crippling

5) It isn't 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 I'm now sixty-nine years old and I've 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 specialised medical advice; participation in an effective, multi-disciplinary rehabilitation programme; 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 Respiratory Specialist Nurse (and a Respiration Therapist) to assure the correct diagnoses and treatments. Too many General Practitioners seem to be conditioned to think "its 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, "Ill prescribe something that will make you more comfortable. And, oh yes, Ill 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, its the way most doctors think. Looking at COPD as a specific illness is as illogical as considering all fractures or tumours 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 diagnostic tests and evaluations, including a Pulmonary Function Test (PFT), or Spirometry Test, as fractures and tumours may require X-rays, MRIs, or CTs to diagnose and treat them properly, and may often demand the advice of two or more specialists.

2. The optimally effective Respiratory Rehabilitation Programme will be multi-disciplinary, and will employ the services of Respiratory Specialist Nurses, Respiratory Therapists, Physical Therapists, Pharmacologists, Dieticians, Occupational Therapists and perhaps, Psychologists. The programme will be of sufficient duration (six to ten weeks) to allow participants to achieve measurable, noticeable success. If no such programme is available, the patient should enrol in one of the less intensive rehabilitation programmes that are offered, but should then push his doctors and hospitals (or clinics), to do more and, meanwhile, work independently to fill in the missing facets. There are some supplemental resources available to you.

3. Once you finish your Rehabilitation Programme, 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," you've got to accept the fact that you'll each have some bad days (and maybe some really bad days), and discipline yourselves to concentrate on the progress you've each made since starting your therapy. You'll also learn that negative talk and complaining is contagious, so you'll 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 you've made or are planning, new ways you've 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.

4. 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 don't fret about becoming dependent upon such drugs. If they really help, you'll be taking some of them all your life but, so long as you don't abuse them, its no different than being "dependent" upon food or water.

5. When at home, practice pursed-lip and diaphragmatic breathing techniques and get on your feet and do something. It won't be easy, and sometimes it may seem impossible, but its absolutely essential that you get more and more exercise. Its 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. Its a critical element in your path to success and to your mental attitude. Should you honestly try, but find you can't, tell your doctor or therapist; they may offer different medications or exercises.

6. 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, you'll probably need to be painfully honest with yourself. I'll 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, I'm 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 rarer diseases that obstruct the airways and interfere with breathing.

2) Because doctors have labelled COPD as "chronic," most do not consider the patients condition to be "acute" and, therefore, give its treatment no urgency, regardless of the patients discomfort or concern. (I don't have to tell my fellow sufferers of the discomfort, frustration, and downright fear the disease engenders: its 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 individualised programmes 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 Pulmonary function test (PFT), or a Spirometer Test your doctor is "shot gunning" 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 won't support your desire to get into a respiratory rehabilitation programme, or doesn't 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 doesn't 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 Programme, but the most important of these is the patients 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 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 its important to both emphasise 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."


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


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 isn't 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 rib cage, 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 neighbourhood, 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 vapour) 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 thats high in carbon dioxide and water.

At least, thats 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 don't 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.


At some point in your Rehabilitation Programme, someone will address the subject of "Stress." They may call it "Stress Management," as they have since the 60s and 70s, 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 can't 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 walked or run around, or the last time you danced across the floor with your spouse or grandchild in your arms. Do they understand that you can't breathe when you lie down, so you must spend your nights in a chair; and what its 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 bad you may be in the hospitals accident and emergency (A & E Dept) 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 doesn't 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 I've made my point: there are many emotional problems a COPD patient must overcome daily, and he needs encouragement to do it. A good Rehabilitation Programme will address this need. Its why I keep saying, "Accentuate the positive and eliminate the negative," and, "Find a doctor who will work with you and support your efforts." Its why I say, "Get into a Support Group." Its why its so important to have the support (but NEVER EVER nagging) of a caring family member or friend.

WARNING! While were on the subject of emotions and moods, I've 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. Don't 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 youre 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 its almost certain that, otherwise, you'll cheat yourself of the opportunity to get the most from your Rehabilitation Programme and, if you finish such a programme, 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, "I've 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 Rehabilitation Programme.

Whether you find an organised 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.


As I've said before, I am not licensed to practice medicine, or to administer any of the therapies I've referred to above, so I can't tell you that any specific Pulmonary Respiratory Rehabilitation routine is best for you; that must be established by the rehabilitation team. I can, however, promise that you will benefit from such a programme, unless your doctor determines that some other medical condition precludes your participation. I can also describe the programme in which I participated and tell my reaction to each of its elements.

I enrolled in Class #3 of the Respiratory Programme offered by St. Jude Medical Centre, 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."

The St. Jude programme 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 patients physicians 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 realised how much one-on-one attention each of us was getting and how each patients routine was customised 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 adds nor subtract without a doctors 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." I've 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 dietician 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 Rehabilitation Programmes.

6) We spent two hourly sessions with the Occupational Therapist, learning how to conserve energy in our daily routines by planning our activities to minimise duplication of effort, organising 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 realised 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 realised 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 programme 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.

10) 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 programme.

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 anothers progress.


I kept the descriptions of the rehabilitation 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 Rehabilitation Programme (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 programme 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).

Trusting that you find the same solace as I did from the above article:

God Bless from Ireland.


PS: But I agree with Sue have yourself checked by your doctor ASAP

thank you so much, I am in reality feeling a kind of shock as the disease is deadly, they say that you either go into respiratory arrest or death. I am shaken as anyone would be. I hope this terrible pain that I have in my stomach and sore lungs scares me to death as I almost croaked in sept from a mrsa periorbial cellulitis and am battling GI and urinary issues. I am going to try and google and I think I need to have a stiff shot of something to stop my panic. thank you Donal for your elaborate coverage that only an educated person (sometimes self) can furnish!
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