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EFFORTS Members Abstracts
Accepted for the
COPD Coalition Conference, Washington, DC, Nov. 14 - 15, 2003
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Disabling Cost of Treating COPD by
Spotting COPD Early by
Physician Education Campaign on Early
Diagnosis & Patient Education by
Living with Emphysema by
|The Great Medical Doctor/Insurance Conundrum by Ken Scott||
How COPD Has Affected My Life by
Whose Fault Is
It That I`m Sick? by
|You Think of Air Differently When You Have To Carry It by Pat Crowe||
Living with COPD by
We Must Have
Early Detection by
Long Term Oxygen by
J. Marie Vielhaber
Living With COPD by
Health Insurance by
Donna K. Bruffey
Life with Emphysema by
Tobacco and the Government by
Donna K. Bruffey
You Don't Want What I Have by
|Emphysema-COPD Are Deadly Diseases by Patricia Hallstrom||
Over the Counter Killers by
|So Little Advancement in the Area of Treatment by Richard Hallstrom|
Devastation of COPD by
|COPD Patient with Multiple Chest Problems by Beth McDonald||
Treat Emphysema as
a Disease by
My Life with
of Emphysema by
|Personal Side of Living With COPD by Vera Franks|
Knowing Your Body and When You are Sick by
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Not only is COPD physically disabling, the cost of treating it can be financially disabling, further adding to the individualís quality of life issues.
Whether working or on a limited income, the cost can stretch the individualís budget beyond the breaking point, even with medical insurance. At one point, for example, I owed money to four doctors, one dentist, two hospitals, one ambulance service and one emergency medical technician service, not to mention credit cards saddled with the cost of prescription drugs I could not pay for with cash.
It is all too likely that the cost of treatment will continue to usurp a higher proportion of an individualís income as the cost of drugs steadily climb, doctor and hospital costs rise and insurance firms further limit what they will cover.
More than once, I have been faced with the choice of paying for a prescription refill or paying some other basic necessity, such as auto insurance. I suspect I am better off than a lot of others, so many may face this same situation.
Faced with this continuing high cost of treatment, I could not help putting off other health-related tasks, such as dental care. Also, with all of the debts, there is no way expensive exercise equipment, necessary to maintain fitness Ė especially in the cold climates -- can be bought.
Short on money, obviously there are many other lifestyle issues affected, such as buying new furniture and clothing, vacationing and obtaining services to help with life needs, such as home cleaning.
Financial problems can add stress and further impact an individualís emotional state, which can affect his/her ability to live with COPD. Any government or corporate assistance with the cost of treatment, such as the high cost of drugs, would be an important plus to those with COPD.
We need a wide-ranging campaign for the public on spotting the signs of COPD, so that people reach out to their medical practitioners sooner and, hopefully, get early diagnosis. Early diagnosis is so critical, since a primary cause Ė smoking Ė is often given up on diagnosis. Also, people need to understand as soon as possible that other lifestyle changes can be beneficial and that there are medicines and other treatments that can assist them to lead fuller lives.
One of many good approaches could be a simple self-test of questions, leading the consumer to approach his/her doctor or a specialist if COPD is suspected. Another possibility would be making funds available to states or communities to have trained personnel do spirometry readings at community health fairs and in similar situations, and the personnel would recommend a visit to a physician if the reading was below a certain point. This is done for many other illnesses at public gatherings, such as bone density tests for osteoporosis and blood-sugar tests for diabetes.
We should do everything we can do to hasten diagnosis of COPD so that no one reaches a severe stage before realization and treatment.
* * *
The COPD self-test in abstract No. 1124 by Kathleen S. Wolford would be called a breathing self-test, include about 10 questions and have a lead-in that reads something like: "Do you ever wonder if your breathing is normal? If you answer yes to three or more of these questions, you should call your doctor or this toll-free number, 1-800 etc., to discuss your answers. Many things can be done today to assist people with breathing issues, and beginning treatment as early as possible is important."
Here are possible questions, all from members of EFFORTS:
Do you find yourself leaning on things to catch your breath?
Can you no longer do activities you could before?
Do you have frequent colds in the fall and winter that last longer than usual?
Do everyday activities make you short of breath, things you blame on "just being out of shape"?
Do you find you can no longer do routine tasks without being short of breath?
Are you no longer able to walk fast and talk at the same time?
Do you feel limp, weak or just plain tired for no reason?
Do your leg muscles seem weak?
Do you find that you get winded with little exertion?
Has anyone in your immediate family ever been told they had a lung disease?
Do you require more frequent breaks than you used to?
Do friends ask you to hurry up more often than they used to?
Do you ever tell yourself that your lack of stamina is just a sign of getting older?
Is your sex life suffering?
Do you cough up phlegm to clear your throat? Does this happen daily?
Do you puff or pant a little after climbing a flight of stairs?
Is housework or yard work taking longer or becoming more difficult?
Do you drive around a parking lot, looking for a spot closer to your destination?
Do you take fewer walks on the beach or through your favorite park than you used to do?
Do sudden changes in temperature, e.g., from hot outside to air conditioning, cause you to cough, or feel short of breath?
Does a good hearty laugh set off a coughing fit?
Has anyone in your immediate family ever been tested and told they have Alpha 1 Antitrypsin Deficiency?
When walking with others, are you unable to keep up with their pace?
We need a physician education campaign covering two areas: early diagnosis of COPD and in-depth treatment and prognosis for patients.
Early diagnosis of COPD is vital, because treatments can aid the patient in having a higher quality of life and diagnosis for smokers often causes smoking cessation.
No one is more crucial in obtaining early diagnosis than the family physician, who may see susceptible patients periodically through the years. Through questioning, a physician can determine if testing for COPD is advisable, either extensive Pulmonary Function Tests or a simple spirometry test at the office. Yet, this is not happening at some doctorís offices. Although an asthmatic, I went for over 10 years before a second set of PFTs was done and, by then, my obstruction was severe. There is no excuse for this when fairly inexpensive testing devices are available.
Second, physicians need to understand the importance of explaining what COPD is and what the prognosis possibilities are to a newly-diagnosed patient. A newly-diagnosed patient today can leave a doctorís office without having had 5 minutes of discussion on what the disease is and how it can be treated. The patient, now in an emotional state, is too often left to get information from friends and family, who do not have the doctorís expertise. If a patient is, at the same time, sent home with an oxygen prescription for the first time, this further compounds the emotional state, sometimes approaching shock and/or desperation. It is not fair nor wise to announce a serious diagnosis and not, at the same time, give the patient enough information, or referral to information sources, so that he/she can have a minimal understanding of what is ahead.
The well-informed medical doctor is in the best position to help with early diagnosis and initial patient education.
After the initial shock of the lung collapse and
resulting pain and surgery, I was left with an awful sinking feeling best
described as ďOh No! What have I done to myself? I should have quit
smoking years agoĒ. Suddenly I felt depression for the first time in my
life. My daughter wanted to come down from San Francisco to see me, but I
was inclined to say no. I let her come anyhow and all I could do at first
was cry and say I was sorry for letting her down. To my surprise and great
relief she hugged me and said it was OK and that it wasnít my fault; she
loved me anyway. I made some tea and we talked about our lives and whatís
ahead. After she left I took on a more positive attitude and then found
EFFORTS on the Internet. There I found new hope and inspiration realizing
that I could actually turn this adversity into an assest if I could help
others as they have helped me. Itís still difficult, but I am making slow
to incurable diseases itís the
insurance that wants to kick us out of the system by whatever technicality
they can come up with while the physicians continue to want to treat us in
an effort to make things better. The Drs. are restricted in what they can
do by the HMOs that are, of course, trying to get rid of us. Even more
desirable for HMOs is to be able to spot us in advance of any disease
symptoms so that they can reject us at the outset of the application
process. This would be the double-edged sword of the DNA databases
building up all the time.
I was diagnosed in 1991 at age 52, six years after I
quit smoking. In 1990, my father died from complications of emphysema and
my mother died of lung cancer. At the time of their deaths I was just
beginning to suffer from shortness of breath and finding myself unable to
perform certain activities. Over the next five or six years I was still
able to enjoy a normal life but during the seventh year there was a
noticeable increase in shortness of breath, sometimes with very little
activity, such as getting up in the middle of the night to go to the
This disease has affected every aspect of my life and I am haunted by visions of my parents` deaths.
Like many of my peers in the COPD/emphysema
community, I have allowed myself to assume a defensive posture when it
comes to my disease. When I find myself out in public with my oxygen
equipment visibly in place, the first question people ask is why I'm using
it. The second question is invariably "Were you a smoker?" My emotional
response to the question is that the questioner thinks I "deserve" to have this
disease because of my aberrant social behavior. I tend to curl up
emotionally like a disturbed cutworm, defending my vulnerable tender
Yes, I smoked. So did many people who have not and never will develop a chronic lung disease. Smoking is certainly what caused my disease; however, I feel that the society/media that participated in making cigarettes and smoking so omnipresent should share in the burden of finding treatment and cure.
Most people donít think twice about breathing. Our bodies are naturally made to breathe. But when you have COPD, breathing is always something you think about, especially when you have to carry it with you. A short trip to the store has to be planned. When you drag along a tank, there is no quick way to do anything. If you make plans to visit friends overnight, arrangements have to be made in advance so you can be sure you wonít run out of oxygen while you are gone. Either your oxygen provider agrees to supply it at the location you are going to or have another provider do it, or you try to take enough tanks with youÖ.or you just donít go.
Traveling by air is another problem. Individuals on oxygen are not allowed to carry their own. They must use the oxygen that the airline provides, if that airline provides it at all. Many airlines donít and for the ones that do, it is very expensive. In most cases, the oxygen is stationery so if you must go to the restroom, you have to go without it. That means that your oxygen saturation can drop to a dangerous low that could be causing damage to your vital organs, such as your heart. SoÖyou either donít go to the restroom or you take the chance of having your saturation drop to a dangerous low.
More and more individuals are using oxygen and manufacturers have developed some really good portable systems for us, but there is still a lot of room for improvement in the use of home oxygen systems. I look forward to seeing what the future has in store for us.
Bronchitis--many colds each winter--Finally went to Pulmonologist who confirmed the Bronchitis and gave me inhalers--Atrovent and Albuterol. Continued working after age 65 on part time basis--Diagnosed with Emphysema at age 70 and went on oxygen at age 71 after severe exacerbation--had to stop working and also had to stop playing golf. Difficult to travel with 02 and even more difficult to play golf. My Pulmonologist suggested the possibility of LVRS because of my overall good health and strong Heart--Started a regiment of exercises including treadmill for 30 minutes with oxygen at 3 liters--Had all the necessary tests and sent to Washington University Hospital in St. Louis--was turned down because Emphysema was too widespread. Very disappointing but DR said maybe for the best and continued to exercise 3 times a week approximately 1 hour each time at Rehab Facility with some supervision. Have participated in several studies including Muscle Fatigue at University of Illinois Chicago--3 years---a 6 month Spiriva Clinical Trial--I got placebo. Have been hospitalized a total of 3 times since being diagnosed with emphysema..Two of those times I had very low sodium after taking Levaquin antibiotic---This made me very weak and hard to get back to exercising. I continue to exercise regularly and feel this has enabled me to continue being active. Travel is very difficult since it is not possible to take portables on airlines. I would love to present this abstract if provisions could be made for portable 02.
When I went to the ER on the night of January 29, 1994, I was diagnosed with Emphysema. I finally had a name to go with how I felt. And, I felt bad, with an fev1 of 33%. I had seen my doctor regularly before this. Chronic Bronchitis had been my constant companion and nobody said this would lead to Emphysema. And, even if they had, I would not have known what they meant. There was nothing in the media then to educate me. Nobody said each exacerbation would scar my lungs. I had been told I should stop smoking and I had tried at least twenty times. I did not know that my habit was an addiction and like all addictions needed intervention. That night in ER was my intervention.
For several years before this trip to ER, I complained of being short of breath. In 1990, while on vacation, I was unable to walk up an incline and I was 59 years old. A trip to Colorado in 1991 caused me to barely be able to function. I didnít know why and I was really scared. Now, I rarely am able to travel. Even a trip to the mall has to be planned like a safari. A lot of hopes and dreams literally went up in smoke.
Today, doctors have tools that can diagnose this killer and everybody who smokes should be observed as a potential patient of Emphysema. Even those who donít smoke should have access to a spirometry evaluation. Young people, who are so vulnerable, should have more warning than the words on a cigarette package. We need the media to join us in explaining, in detail, what COPD is. Every magazine, every news program and every school should be educating our families and friends. Many of us donít look sick so the general public still has no fear. If you did not see my oxygen tank that is part of me, you would never realize that I am in the end stages of this disease.
To me, Emphysema is no longer a word on a cigarette package. To me, it spells death.
When people with emphysema finally get to the point that oxygen therapy is required, they have to admit publicly what their behavior has cost them. Many feel a deep humiliation. In past years, few people were seen with a nasal cannula in their noses. One simply stayed at home hiding from the world what they could no longer hide from themselves.
Now, we are encouraged to get out of the house and join in activities even though we have limitations. So, improvements have been made. However, it is still up to us to smile when others stare. And, they do stare. But, thatís not the biggest problem with our being on oxygen. Newer methods have been tested and have been found to lighten the load. It is up to our oxygen suppliers to keep up to date. Through EFFORTS, I have learned of different oxygen deliveries but have met with frustration when I talk to my DME about them. Traveling with some of the archaic systems is almost impossible. So, we gradually give up any hope of seeing friends and family who live a distance from us. Few people can afford the fee the airlines charge to have oxygen available for us. We are further hampered since 9/11 because the oxygen provider cannot meet us at the plane. Somehow, we are supposed to get to the loading gate without breathing. If we can make it that far and the gods are with us, the oxygen people will be there with a filled tank for us. I have overcome many difficulties but have no hope this will be corrected in my lifetime.
I am a 76 yr old woman (retired Mechanical Engineer), diagnosed with end stage emphysema in 1998. I have been going to rehab sessions at our local hospital for four months (since they first offered rehab), and also walk a treadmill 30 minutes a day at 2 mph at home, and work with 4 lb weights. I would not have any quality of life at all without the benefits of exercise - when I have had to miss a few days, I can barely drag myself through the day. With the exercise, I am fairly active in my church, work with Friends of the Library, belong to and work with our local computer user group and attend three Alcoholics Anonymous meeting each week. It is primarily the exercise that makes all this possible, although I am taking medication (Advair 250/50, 2x per day and Spiriva 18 ug)
14 months ago I was diagnosed with Emphysema after being admitted to a hospital with Pneumonia. I was told, "Good news, you get to go home with Oxygen." I started crying. What's so good about that?
When my 5-year-old grandson came to visit in the hospital, he was overwhelmed with all the tubes, IVs, and other equipment attached to Grandma. I did my best to distract him.
My grandson came to visit me the day after I returned home. My daughter-in-law asked me if I'd said anything to my grandson about dying. No, I hadn't. She said "Well he asked me if Grandma was going to die." How do you tell a 5-year-old that yes, your grandma is going to die from this disease (Emphysema), but not for a while? I did tell my grandson that the reason I am sick is because I smoked. He understood, and now tells other people he sees smoking that they shouldnít, because they will have to use Oxygen.
After listening to that, it made me think... Do they have programs in schools to show the kids and teens what happens to those that smoke? If they do, do they have someone there with Emphysema so that they can see how it truly affects you? We need to teach them the cold, hard facts about what smoking tobacco does to the human body. And to those you love.
Itís time for the Government to see to it that those sticks of poison must be treated like a cancer, and stomped out. How dare the Government make it legal to smoke some so addictive and full of poisons, and yet make it illegal to get cheaper, more effective drugs from another country?
Authorís Comments: I watched my Dad die from Emphysema 5 years ago. My children and husband are watching me die from Emphysema. How many must die before someone starts doing something to eradicate this deadly disease?
People try to find jobs that include health insurance as part of the benefits package. Itís wonderful when they succeed. Then the company starts playing games, changing the health insurance coverage. The health insurance companies will do whatever the companies want, because they will get their money, despite what coverage is lost. The health insurance benefits decrease, but the cost of that insurance increases. Then when you develop a major disease such as Emphysema, the insurance companies start dragging their feet on what THEY consider necessary. This can include medications, treatments, tests, etc. I just had the experience of being forced out of my State job because I went from short-term to long-term disability. At that point, I lost MY health insurance and was placed on my husbandís STATE health insurance policy. Same State, different division. I had one insurance company, he another. I was told last week that I would not be covered under my husbandís policy because of a pre-existing condition. Now whoís going to pay my hundreds of dollars a month bills??? Or must I choose between medication, oxygen, food, or electricity?
I donít know how many thousands of people this happens to, but the Insurance Companies have to be stopped in their selection of what they will or will not cover, or who they will or will not cover. When a person loses their job, they should never be allowed to lose their health insurance. This must stop NOW.
The people of the U.S. need to band together and DEMAND united health insurance coverage. This must cover EVERY test, dr. visit, hospitalization, prescriptions, home care, and more. We must make our elected officials hear our voice and demand that they do the good things we, as a whole, need.
Authorís COMMENTS: The U.S. Government needs to take a GOOD HARD look at the insurance companies and all the problems and death they essentially cause people. The American people need to work together to see that this gets done.
Quality of Life
According to the NIH, only $588/death is spent on COPD Research, yet HIV/AIDS gets $43,206/death. Emphysema has been around for MANY more decades than HIV, yet no one appears to care enough about the number of deaths to do the research to find a cure. This makes me mad as hell!
As a taxpayer w/COPD, I demand more research for this disease. Several months ago I wrote to NIH asking for more research in this area. I received no response, just as I received no response from the Virginia Senators, Virginia Governor, The President of the U.S., Oprah, Dr. Phil, and several newspapers.
Doesnít anyone care? Arenít folks with COPD important enough to try to save? Or, are we just ďthrow away peopleĒ? Suppose we change the rules and make those with Breast Cancer the ďthrow away peopleĒ, or those with heart disease, or those with Diabetes.
I suppose all people with COPD should stand on street corners with their tin cups, begging for money for research. If that is what it takes, then Iím out there! Another question is what does it take to GET the funds for research? Does it take rich and famous people dying from COPD? That might draw the average personís attention. Ok, so Johnny Carson has COPD. Heís famous. Letís get that news out in the open so maybe other famous people with the disease might ďcome outĒ.
Whatever it takes, we need to demand more funds for COPD research.
How much money do the government officials need to be paid before they admit that cigarettes are poison and demand they cease to exist? The tobacco farmers grow tobacco for monetary profit, primarily from the tobacco industries that purchase their product. I understand their need to make a living.
The tobacco companies (RJR, Phillip Morris, Liggett & Myers, American Tobacco Co., etc. are buying tobacco from the farmers, paying a minimal amount. They in turn add hundreds of toxic ingredients and sell to the public, with government approval.
In a tobacco lawsuit, itís stated ďThe federal complaint also employs the special authority of the Attorney General to bring civil actions under the RICO statute, to obtain equitable relief, including disgorgement of ill-gotten gains, and to prevent and restrain certain unlawful conduct.Ē The government is being paid off by the tobacco companies, so they can continue to sell their death sticks.
Are the American people going to continue to allow this to happen? I say NO! Itís time the entire truth come out in regards to tobacco companies, the government, and what the public is told. The government is involved in yet another coverup, but they arenít paying the price to the right people. They need to take care of the people they are contributing to the death of.
The Attorney General determined in December 1998 that the U.S. had viable grounds to pursue recovery from the cigarette companies for health care costs caused by smoking.
Quotes from Ö.
I was diagnosed with Emphysema in 2002, after 50% Of my lungs were destroyed. I had been seeing the Doctor on a regular basis for colds, Asthma and Bronchitis and was put on medications to help. Most Of the time I had to take one med after another to clear everything up. This began in 1995, and in all these visits I was told to stop smoking I was never told of my condition. I have been short of breath for years and chalked it up to my job. Health and education on my condition was not made known to me until I asked to be referred to a specialist. He informed me that I had COPD but I already knew that there was something terribly wrong with me. I just couldnít get the answer from my When I got home I immediately looked for a support group to join. I found EFFORTS. As I read about people being on medications from Canada and Mexico, and how well they are doing and the amount of money they are saving I wonder what is going on with the F.D.A. in the United States. When 50% of your lungs are dead, you are willing to take a chance on any medications that will help you take that next breath. I now receive the help I need through the EFFORTS website. They tell me more than my own doctor tells me. We as COPD sufferers need more avenues, more truth from our doctors concerning our health, more funding and less expensive medications to help us breathe.
I was diagnosed with Emphysema/COPD in 2002. I began by having trouble with colds, Bronchitis and Asthma in 1994. I was not aware at the time that this would lead to COPD. My doctor put me on an inhaler and told me it would help me to breathe. As things progressed, I developed more problems. I Was finally forced to leave my job of twenty years. I stayed on the inhaler.
In 2001 I asked my general practitioner to refer me to a Pulmonary Doctor. He did and after my exam, the doctor told me I had COPD. Earlier detection may have saved me from this devastating disease.
I joined a smoking cessation group called EFFORTS, Emphysema Foundation For Our Right To Survive. I was taught how to change my lifestyle to do things to keep up my strength. I entered and completed a pulmonary rehab. My quality of life has diminished severely in the last three years.
I am house bound if the pollen count is over 7% and the humidity is high. My sexual life is non existent. All winter I am at home as I have difficulty breathing in the cold, nor can I go to places where there are crowds, so my social life has pretty much disappeared. This disease leaves you terribly frightened,
Tired, lonely, depressed, anxious and misunderstood even by family members. I am on ten medications per day and two inhalers, and now they have added Nitro to the list for Angina.
As this disease progresses, it begins to destroy other organs in our body.
I want the public and the medical profession to be more aware of what this disease does to people. We are dying little by little and there is no cure. Why? Because we lack funding.
We are afraid so much of the time, mostly because we lack personal funds, many have to cut down on their medications because they canít afford to buy drugs and eat too.
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I smoked at age 16. I am now 58 and dying. I began by getting colds, which turned into Bronchitis, then chronic Bronchial Asthma to COPD. I was never told by my physician where these symptoms were leading. I finally asked him to refer me to a pulmonary doctor. Thatís how I found out I had COPD. Had I been diagnosed earlier, before 50% of my lungs were destroyed, I might not be writing to you. I was put on medication, given nebulizer treatments and told to exercise and eat right. I was so short of breath I couldnít walk upstairs. EXERCISE? Not in this condition. I finally joined a support group called EFFORTS and became involved in their smoking cessation program. It was the worse case scenario for me. I was so hooked on cigarettes that I had to lock myself in the bedroom until I could come out without needing one. And to think these wonderful cigarettes are sold over the counter at any store in town. My life, such as it is, remains in Limbo. I exercise when I can, but often I have such shortness of breath I canít even roll over in bed. I canít eat a full meal because of bloating, so I eat small meals which always leaves me hungry. I donít want to go anywhere because I am so exhausted. Quality, ha.
Quitting smoking is the best thing a person can do, but it wonít change the fact that you have already been challenged by the smoking that led up to the need to quit.
Abstract Authors Comments: Better to crave a cigarette than a breath of air. Cigarettes kill, get them off the market.
I am 59 and have COPD, Emphysema, Asthma, Depression and Anger. I live with my wife who struggles with this disease so I can see on a daily basis of where I am headed. We do what we can for one another but it is very difficult. My COPD is not as advanced as my wifeís, but I am not able to help as much as I would like.
Since I have been diagnosed, I have become very depressed , which they tell me is a side effect. I am to the point where I donít leave the house unless it is for a doctorís appointment. I am angry. My wife and I have a wonderful marriage and had a wonderful life, and it hurtís to see her suffer so. To know that aside from being hit by a truck, I will go through this also.
I will go through it alone. I canít eat as I have no desire. My wife is worried about me enough to have enrolled us both into rehab therapy. I also see a Psychiatrist, and a therapist for my anger.
I know that good nutrition and exercise are the best ways to keep my body In shape, but I canít get my energy level up enough to do it. We have both Had to tell our five sonís about our conditions, and I have been left with a great deal of guilt.
We as sufferers need more help. We need better and more affordable medicine to help us breathe. We need more information from our doctors much earlier. We need to make the world aware of this killer. We need Congress to get involved in making the tobacco industry pay for research AND DEVELOPMENT AND NOT LET THEM TAISE OUR TAXES TO FILL THEIR POCKETS, WHILE WE STRUGGLE TO EXIST.
Diagnosis of COPD is, for many patients, the beginning of financial disaster. At the time I was diagnosed with mild COPD in January, 2000. I was a self-employed craftsperson with a mail order internet business. I purchased health insurance through my local Chamber of Commerce for $3000 per year. Medical expenses not covered that first year amounted to over $13,000, including additional diagnoses. Naturally, as the amount I owed went up, my stress level rose too! Because I did not feel well, I was not able to work as efficiently. I worked longer and longer hours to do the same "day's work." Whenever I had an exacerbation I lost whole days and even weeks, thus lowering my dwindling income further. At the beginning of 2001 I could no longer pay the quarterly premiums on my health insurance. My medicines for COPD, heart disease, depression and esophageal/reflux problems were $1200 per month, and I began the process of filling each prescription one at a time as the mailbox received money -- often juggling a "less urgent medicine" to refill a more crucial one. At that time I moved from a house to a small apartment in an effort to further economize. That move took a further toll on my health, and I was forced to apply for Medicaid in order to continue my medications. In two years I went from a solvent craftsperson to someone who is almost destitute. Throughout this horrific process, none of my doctors inquired about how COPD was effecting my ability to live my financial and emotional life, yet from speaking with other COPD patients, I have learned that my awful experiences were by no means unique. There needs to be a way to treat the WHOLE patient, and address the urgent financial concerns which crop up in the midst of this chronic illness.
COPD patients with multiple chest conditions -- lung, heart, and esophageal/reflux problems -- do not know WHAT is happening when they are short of breath or experience chest pain. They do not even know which medical specialist to consult first! Multiple medical problems seem to interact with and mimic each other, which clouds accurate diagnosis. For example, a patient might visit his pulmonologist complaining of breathlessness and sporadic chest pain, and be told the problem is actually his heart. The patient returns to the cardiologist who just as emphatically announces that the REAL culprit is the esophagus. The patient goes to the gastroenterologist for help with the episodes of severe chest pain, and once again is told the pain is coming from his heart! Unfortunately this situation, with variations, is all too common, and is mentioned almost daily by someone on EFFORTS, our online patient support organization. It is a source of confusion, depression and anxiety for the COPD patient, who is usually not a medical professional, and can do no more than painstakingly describe his symptoms to the various specialists. It is frustrating for the patient to be shuffled back and forth from office to office, while the medical issues remain unresolved. Is it any wonder that the patient begins to feel the situation is all his or her own fault? It is not unusual for the patient to begin to receive treatment for depression and anxiety as the medical dilemma drags on. This common problem needs a solution! How can diagnosis and treatment of multiple chest conditions be improved?
The first factor that can be greatly improved upon is time of diagnosis. Many times patients believe they have a "cigarette cough" and it will go away when they quit. Why is emphysema not diagnosed until it is too late and 50% of our lungs are gone? Spirometers are cheap and can be had for between $500 and $1000 dollars. Far less expensive than other diagnostic equipment and procedures i.e.: mammograms, cat-scans and colonoscopies. It takes about ten seconds or less to get an idea of what your lung capacity is. Make this a mandatory test to overcome lack of awareness on the part of family practitioners and guilt on the part of the patient. It's very possible to diagnose this disease well before a persons lungs are 50 % below capacity. We have the technology to do so. It is not even very expensive.
80% do your children run slower than everyone else?
50% heading for oxygen
30-45% on oxygen and probably disabled
25-30% get listed for your transplant
25%-0% three years or less to live?
Research & Treatment
Research inequities needs to be addressed. Make NIH funds proportionate to the numbers of people afflicted with a disease, at least more reasonably so than is done now.
The National Health Information Center maintains a calendar for health observances. COPD Awareness Month and World COPD Day need to be added to it to increase participation by local hospitals and lung/respiratory organizations.
States with COPD/EMPHYSEMA information
The following states have no information for COPD/EMPHYSEMA on their consumer information sites: These states are listed in order to reflect the depth to which the neglect of this disease is an established part of government, health care agencies and medical institutions in general. There is no disrespect intended to the many professionals & organizations working to improve our lives and health.
I have had emphysema for probably 20+ years, but was formally diagnosed in November of 1997. Since 1985, when my husband died from emphysema, to the present, there have been a number of improvements in treatment but very little improvement in medications. However, as much as I thought I knew about emphysema, it was not enough and I was not prepared for the personal relationship with the condition until it was advanced enough to make a dramatic impact on my life and the way I lived it. I wish I had known more about emphysema while my husband was alive, because I would have been more aware of how and what he was feeling and why. It is so important that the general public be made aware of this condition without imparting blame to the patient for its acquisition. At present and with my physicianís approval, I am using Spiriva, which I import from The Netherlands and find that it considerably improves my quality of living. Hopefully, the FDA will soon approve Spiriva for sale in the United States so that more people can benefit from this advance in medication. Public awareness is crucial, but it is important that the health care industry be made aware as well. Spirometry should be included in every physical examination as well as blood work and EKG testing. Early diagnosis and treatment should be a priority.
My lung disease was discovered over 30 years ago by a chest xray taken before small surgery. I had bronchitis for years. Doctor said, quit smoking or die young. Smoked for 3 more years, coughed so bad I could hardly lay down, really SAWmyself in daughters wedding pictures, quit smoking, that was almost 28 years ago. Started smoking in 1944 at age 12. Weighed 85 lbs, didn't want to gain a lot so started exercising at a gym, not knowing I was doing the best thing in the world for myself. wanted to learn more about my disease so went to Respiratory College, completed my 2 years and worked in the Resp. Dept of a local hospital for 17 years. Got my CPFT, did them for 5 years and then we started a patient teaching and rehab. I taught 3 classes a week of outpatients, and worked in cardio/pulmo rehab for 4 years. I retired at 62. Am still going strong, wear 02 only at night and while exercising. I cared for my mother, who I just placed in a nursing home and mother in law who is still in her apt. They are 95 and 96. I have led a very full life, kept weight down, exercised faithfully, kept active, and loved my job. Early detection is the key, and quitting smoking and exercise. But ATTITUDE is a way of life, and if you fight this disease with everything you have in you, and really work at it, you can have a good life. I have been hospitalized about 16-18 times, been on high doses of prednisone, came home so weak I could hardly stand, fought back to where I am now. I am 69 years of age.
I had a conversation
with my son, who happens to be a Federal Agent. I asked him this question
"If the FDA knew of a product that was causing illness and death, would
they take if off the market?" His answer to me was "Yes of course they
would, and they do!" I responded "Well then, why doesn't our government
do something about cigarettes?" He just looked at me. I know that this
is simplistic. After all, the millions of dollars of revenue generated by
the tobacco industry is much more important than all the lives that are
lost every year. My son also said to me that I had "chosen" to smoke
cigarettes. That is true. It was 1950 and I was 16 years old. Before
long, I was addicted to a product that would eventually kill me. I had no
idea how dangerous it was. Today, my children and grandchildren see me
struggle. I tell them at every opportunity to not abuse their bodies. I
did quit smoking in 1984 and was diagnosed with severe emphysema in 1990.
Thirteen years later, I am on oxygen and my FEV1 is 20%. I can no longer
dance with my husband. I can no longer take walks on the beach. I can
walk about 250 feet before I am gasping for breath. It is a horrible
price to pay! I worry about the future. If my husband dies first, I wont
know where to turn. I applied for Long Term Care (Nursing Home)
Insurance, but they wont insure you if you are on oxygen. Am I angry?
You bet I am! I am angry with our government. I weep for that 16 year
old girl who picked up that first cigarette! Is anybody listening?
My name is Ron Ersin. I'm sixty nine years old and was diagnosed with emphysema eight years ago in 1995. I knew that I had some decline in lung capacity on exertion but not enough to interfere with normal living. I had a Pulmonary Function Test with FEV1 of .940 or 27% predicted pre med. and 1.11 or 32% predicted post med. Two years later I tested FEV1 of .700 or 23% predicted. Now I was getting quite concerned. In February 1998, I was put on oxygen at 2 lpm for sleep and exercise. At the end of 1998 I needed surgery for colon cancer and my pulmonologist went on vacation without giving surgical consent, causing the operation to be delayed. When I next went to pulmo. I made the appointment with a senior partner.
I try to be as good a patient as I can for my own benefit. On my second visit to this doctor I said it would be helpful to have some patient information booklets about breathing diseases. He got very upset and said I complained to much and he was releasing me to find a doctor I might get along with better than him. No charge. I waited for him to smile but he was dead serious.
I said I was stunned that he would take such offense. I had four years invested in his office and he repeated that he was releasing me. I felt so utterly abandoned by him and I could not understand why it happened. It was one of the most vulnerable times in my life and he offered nothing.
In 2003 I am now at FEV1 .490 or 17% predicted. Oxygen 24/7. I think what I need is a pulmonologist who has emphysema. He would understand.
I was diagnosed with severe emphysema 9 years after I quit smoking. 2 years after I quit smoking I started to have some problems breathing. I visited several Doctors several times. The first doctor had my lungs ex-rayed more than once. I was told each time, my lungs were fine. He assumed it was my thyroid condition causing the problem so there was no follow up.
The second Dr. talked to me and decided I just wasnít getting enough exercise, told me that was my problem.
The third Dr. had my lungs ex-rayed; again I was told my lungs were fine. But he thought I may have asthma and started treatment for that. When it didnít help much he sent me to a Pulmonary Specialist. After reading the same ex-ray and some testing, the Pulmonary Specialist told me I had severe emphysema, with less than 40 percent of my lung function left. He told me there is no cure and it cannot be reversed. I went home in a panic.
I found a group called Efforts on the computer and feel they saved my sanity. I learned so much about my disease, how to cope and the questions to ask my Dr. on the next visit.
Early detection would not have stopped my emphysema. I do feel with medications I would have had a better quality of life, and maybe been able to slow the progress.
There are many articles
written about this disease, but I would like to touch on some things only
a patient could tell.
It has been three years since a life-threatening exacerbation changed the way I live my life as a pulmonary patient. I went
back to work half days from June until December 2000 when I just couldnít push myself out one morning at 0ļ with snow falling, lugging my oxygen tank after a 20 minute drive to work, park, pant my way to the door, stop, to the ladies room, stop, up the elevator, stop, through two departments to my desk, collapse. Quick take off valve, replace with pulsing valve so I would have enough oxygen to get back to my car to return home. That was my life and I didnít like it. So at 61 I took family leave for three months then went on disability and changed my way of living. I started pulmonary rehab per doctorís orders after barely passing stress test. I completed Phase Two in May 2001 and still go twice a week for Phase Three, now doing half cardio and half weight training. We also have yoga on Mondays and I love it. I went to Weight Watchers with my younger daughter and lost 40 pounds by December 2001 and I feel so much better about myself now that I am stronger and not burdened by excess weight. I am now working on decreasing prednisone and was off last summer but had to go back after a cold last fall. It is very hard for me because I get horrible nightmares, bruises and sleeplessness on withdrawal. I have taken an aggressive approach to improve my quality of life for me and my family of six kids, fifteen grandchildren and a ninety-three year old mother.
With COPD it is important to know when something
changes with your health. In being aware of your body and how you
feel you can head off major infections by getting needed medical
attention. It is also important to either participate in a Pulmonary
Rehab program like I do twice a week or get the same type of exercise at
home and be consistent about doing it. Lungs are muscles and when not
exercised you lose ground which you may not get back.
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