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About Me:
PART 1:  Hi, my name is Mary and I have COPD.  My COPD is Emphysema with a little Asthma. I was at my primary doctor August 2001. I wanted to get myself checked because I knew we may have to go without health insurance soon. I mentioned having some problem breathing. I got the regular quit smoking message, and if I did then I should, feel 80% better. Along with stop smoking prescriptions I also got albuterol to help me breath.

I was 58 years old when diagnosed, and started smoking at least 43 years before that. I was to return to doctor in six months for a follow up. I did not go because I had not quit smoking. I felt if I didn’t quit smoking that there is nothing a doctor could do. I wanted to quit and yet it seemed I just could not do it with what I considered stress (and it was at the time) in my life. My life has always been that way. 

We did not cancel our insurance but were able to raise deductible from $1500 per year to $10,000 per year (per person) to get our premium from $1,565 per month to about $573 per month. We did this in June, 2002. I guess I kept thinking that I could really quit smoking and I would begin to be okay. We probably all go into denial at times. I am trying to state facts here to see how this happened and someone else may benefit from my story. However, by August 1, 2002 they had already raised our premium and now it was up to $839 per month. I am including the insurance problems because that was a big issue with me when it came to medical care.  ALSO, that was the month I stopped breathing.

I was sick one day and don’t remember it too much. I was in the bathroom and trying to get back into bed and could not make it. I called for help, ended up laying on the floor. I kept saying “No hospital, We can’t go to the hospital. We can’t afford it”. I know I had mentioned the $10,000. Our finances were already draining from our savings due to a bad situation with employment and they were really going down.

My son arrived home and immediately said “I am calling the paramedics.” I was in and out of consciousness from then. I remember being treated on the floor and some of being at the hospital. I ended up on a ventilator and at one point they took me off. I wasn’t breathing on my own and they had to put me back on the ventilator. I was on the ventilator for almost two weeks. They told my family to come to the hospital because they did not think I would make it. They were surprised that I did. I was on morphine and most of the time I was unconscious and not aware of what was happening. I have been told some and it was not so pleasant. When I was taken off the last time I was told I had to breath and but for God’s Grace I made it and am here today.

This is a very humbling situation. I could not even stand up on my own two feet and it was like learning to walk and talk all over again. I was fortunate to get my voice back too. They did use nicotine patches even while I was out of it but with everything else I didn’t have any trouble with smoking. If you get a tube put down your throat like this it can cure most people, I think. I had not been in a hospital since 1970, and that was for maternity. My husband never smoked from the time I went to the hospital and he too smoked all his life.

PART 2:  I have been on oxygen up to 3 liters and at times none. The none was short distances and on good days and didn't last long and was 24/7. On bad days or exercise I go to 3. I attend a Pulmonary Rehabilitation twice a week and it is probably the best one in town, at the time of this writing. I started October, 2002. Once a week there is a one hour class and once every other week is a support group. The classes are very educational and to work with this disease you need to learn about it. We have one hour of various exercises. Exercise may not sound like the thing to do when having problems breathing but it is very important. We bought a treadmill for me at home. Caution: DO NOT exercise without guidance by professional medical help who know and can teach you about limits and such.

There is a lot I went through that I could not begin to tell it all. I have learned so very very much. I still have questions. Sometimes, I wonder if I will ever be through asking questions. I will be including some good sources for information through this web page.  I use laughter and am upbeat most the time. I do have a problem with the times that I feel down, or when something will happen, and it will be like the straw that broke the camel’s back and I cry and cry and cannot control it. It is becoming less often. I think it just builds and probably for the things that I cannot do, or when I see others doing what I would like to do. I feel good for them but I cry for myself, I guess.

When I have anger, or tears, or any other negative feelings, I can get over them fairly soon, because I know good tools to use, and I have a loving family, spouse and I have God. All the same it is not easy to avoid feeling that way at times. I  read where so many people are having normal lives. I am having a problem there. It is like I am trying to have a life around this disease.  On the web page of COPD International it says “You can learn to control this disease instead of letting it control you!” In my case COPD is still in control and I want to change that.

I do have a pride issue that I am getting better at with the oxygen since I have the portable and not lugging the big tank. But it is still heavy to lug around. I use the compressed as I have to buy my own and cannot afford the liquid. I miss being able to just walk outside or to the mailbox. I can do it but on the days that I have to use the oxygen, I have to get hooked up to do it and just easier to stay inside. This is a big issue to me. I use a concentrator in the house and that will only go so far. I feel tethered to a tube.  Updated February 5, 2005

If you are new to COPD the following is often shared: 

The very first thing to do is to quit smoking. See a Pulmonary Doctor. Get in a Pulmonary Rehab program. Become as educated on this disease as you possibly can. This disease is not curable but can be reasonably controlled if you know what you are dealing with. You need to learn.

There is a wealth of information on the Internet. As is the case with anything. You want to go to the reputable places or people. Becoming a member of an online COPD Forum or Message Board is something I recommend. It is like a support group. You can ask questions and get the support you may need that you cannot get at home, because these people are going through the same things you are.  Stay up on new medicines or trials.

I am all for promoting awareness of COPD. It is not well recognized or accepted, either by means of the public, others in medical field, research, fund raising, and numerous other areas. There is a false stigma wrongfully attached to this disease that prevents as much attention to it as other diseases get. This web page is not for that discussion. I believe that awareness has to be done as a larger unit. Therefore I personally feel that we all need to come together to get things started and accomplished. Generally message boards are a positive thing and yet sometimes personalities will conflict, or written messages can be misunderstood. I just want to express that I feel any negative feelings need to be set aside when it come to promoting COPD. 

What Is COPD?

COPD is a group of lung diseases. It includes chronic bronchitis and emphysema, which are most often caused by heavy, long-time cigarette smoking. COPD can also include chronic asthma, which is a hypersensitivity of the air passages in the lungs. Bronchitis, emphysema, and asthma all have one thing in common: They limit the flow of air into and out of your lungs. As a result, you may cough, wheeze, have excess mucus, and feel short of breath.

How is COPD Treated:

Although COPD cannot be cured, it can be treated. Your health care team will work with you to develop a treatment plan. It may include taking medication, learning to breathe in better ways, and doing things—such as exercising, controlling stress, and stopping smoking—to help prevent shortness of breath. Following through on your treatment plan will make all the difference in how well you feel and how much you can do.

Below are a few links. You can find more on my 'Links' page. Click 'Links' at top of this page or click this 'Links' graphic below:    

Pursed Lip Breathing

Panic Attacks

COPD Foundation

Sick Lungs Don't Show - A MUST READ!
My Inspiring Favorites on my Whatever page CHECK THESE OUT!

 

 

Below are links to magazines, pamphlets or books you might want to subscribe to for minimum or no charge. You will find that many Internet groups like the message boards have their own newsletters.

Excellent COPD Digest  This is one of my favorites magazines.
Everything Respiratory   This is the other one that I especially like.

Guide to Better Breathing ;This is a good guide to COPD
Efforts link to Printed COPD Literature These are all worth looking into. I am not familiar with all of them.
Will Rogers Institute --> There are many helpful booklets you can order free of charge.
National Institute on Aging --> There are several publications free of charge. I got several on Cancer that were very helpful.




DISCLAIMER: Please note that nothing here substitutes for being under the care of a doctor. No exercise is recommended without doctor's approval.

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  revised or additions as time permits."
Update 2/8/2005; 2/20/2009; 11/3/2009 (2763)


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