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← Return to COPD end stage: Anyone else?
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I've just been diagnosed with COPD. I don't know what to expect. I have my first visit with my Pulmonologist in November. I do my best to lean on my faith but there are days when I get overwhelmed with what's going to happen to me when it gets really bad since I live alone. Sometimes I'm scared to death of suffocating. Hopefully my Pulmonologist can help me understand this disease.
My family doesn't seem to take much of an interest in my disease. i've told them what I have but they never offer to help me with chores. I'm not one to ask for help either. Maybe I should start asking for that but I'm so stubborn. I've always felt that if they wanted to help they would just automatically do it. We were raised to take care of our elderly. The kids these days only think of themselves and they don't want to talk about it either. I think it scares them because they know it's not a curable disease. Do you have any of those kind of problems with your family members? And how do you handle the really bad days? I don't know what to expect? That's what I'd like to find out.....what to expect. Does it get bad quickly or gradually? Well, thanks for listening to me and thanks for sharing your part of your disease. God bless you and be at pease......Shirley
Replies to "I've just been diagnosed with COPD. I don't know what to expect. I have my first..."
It is a difficult disease. I have been dealing with it for almost 20 years. It is getting bad now. Keep exercising as much as you can for as long as you can. Try very hard to not get sick. For me every time I got sick it moved into my lungs. Each time it took me down to a new lower level. It is very difficult to get people to understand what you go through. They don't have a clue. It changes from hour to hour sometimes it is not so bad and others can't catch my breath. Showering and dressing are a challenge. My wife is an angel but she is wearing down now that it is more difficult for me to help with very much. The hardest part is that you know it will never get better and that this is the best you will feel
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First you need to know and let others know which branch of COPD you have. The reason for this is if it is emphysema they immediately take on the thought...."you smoke and got what you deserve", if it isn't then they need to know what it is. Have you been checked for Alpha-1, it is rare 1/2500, you can get a free test kit from Alpha1.org. Alpha1 is hereditary and can cause COPD. I am a carrier and a Dr at Mayo said I probably would have got it even if I didn't smoke, but the smoking didn't help. You need to learn about COPD.... a very good source is COPD.org. Yes, it is NOT curable and is progressive, but there are many things you can do to slow it down and make it easier to live with (pursed lip breathing when short of breath, respiratory therapy-medicare will cover 36 sessions). I moved my inhalers to nebulizers so they would be covered under medicare part B instead of part D.