End Stage COPD: What is it and What Does it Mean?

I feel much better after reading your article. I felt that my days were numbered after the Dr. told me I had end stages of COPD. That is very drepressing and I am looking forward to reading your future articles.

Patricia

Hello Patricia,

I'm glad you're feeling better! So many people feel exactly the way you did. Sure, severe / "end stage" COPD is serious -- very serious -- but that doesn't mean you still don't have a lot of living to do. Keep on reading and learning, and take a minute to visit my website where we say, "It's not all about being sick. It's all about living!" I look forward to writing more about this subject and hearing from readers.

Jane. 

Thank you for responding. I have been struggling the past 6 months. I can't even get dressed most days or even brush my teeth and yes struggle to eat somedays. But, I refuse to give up. There has to be hope somewhere. My mother just passed a month ago from COPD and CHF. She had given up, she was tired and had been in the hospital so many times the last 2 years..I'm hoping for a better outcome.

Dear Patricia,

Sounds like you're really struggling, but you have a wonderful spirit! Is there a pulmonary rehab program near you? If you can get over there, they will do their best to help you. 

There is a lot of information on this site and also on BreathingBetterLivingWell. If you go back and read my posts here on Health Central, you'll find information about breathing techniques, choosing a doctor, and all kinds of things to live with COPD. Keep on learning everything you can -- and stay connected to others who are going through some of the same things you are. 

Hang in there!

Jane 

http://www.breathingbetterlivingwell.com

This is for Patricia. My name is Cynthia. I have emphysemia and was given 6 months to live 2 weeks ago,,,I am in desperate need to have someone to talk to,,,someone who understands,,,I have been going through this site and have discovered that it is not a death sentence,,,that I can live for years,,,Thank you God,,,If you want to chat my e-mail is aquamarinejmbs@yahoo.com. Hope to hear from you. Thanks

You're welcome, Eileen. Thank you for your comment. You're right. Many docs just give the patient that diagnosis and then send them on their way. I know firsthand that life is not over, there is a lot that can be done. At my job we do it, and I love what I do! 

Thanks again!

Jane.

First of all, congratulations on being an ex-smoker! You don't say how old you are, but if you smoked for over 40 years and have quit and you now have 81% lung function, that's pretty good. That range of 50-80% is quite a large range and takes in a wide variety of limitations (or not), so don't be overly concerned about being considered "moderate" if you're on the very high end of that range.

Here are some benchmarks to tell how you're doing: If you can keep up with others your age, you don't have a persistent cough producing sputum on most days, and don't lose time at work due to breathing problems, it sounds like you're doing alright. Of course, your doctor knows you best and sees you in person, and he / she has the advice you should follow. You didn't say if you have a pulmonary doctor or not, but if you have any of the above symptoms, you might ask for a referral. 

With your smoking history, though, you should probably have a PF screen (spirometry -- just a quick and very simple lung function test) regularly, just to know keep track of how your lungs are doing. You should know your lung function numbers just like a diabetic knows their sugar levels or like we should all know our cholesterol numbers.

If you're not smoking and staying away from lung infections, you giving yourself a good chance to be stable for a long time. 

Thanks for your comment. I hope I answered your question and I hope this helps.

Jane.

hi jane, im tad past 65, 5'3 1/2 weight 244, i  think the weight may hinder my breathing, my biggest worry is how much lung % i will lose from here to say 90, hey im hopeful, or since i quit a yr ago will my numbers go up some or remain the same for a spell? lot of questions

ok jane, on my spirometry reading which wasn't a full test, just actual and predicted no post was done, on the paper above ea of three tries it says normal, so at 81% normal how can i fly from normal, skip mild and on to moderate? i did ask doctor if i should see a pulmonary doctor he said no, so if im that close to 80 or 79 which is moderate then i do have copd? i was puzzled when my ins co called me to ask if i wanted to sign up for conditon management for my copd, i was flabergasted, called ea doctors office i had been to echo test etc and no one knew.nothing noted about it.

  i thought thats the whole point of getting an early diagnosis, to slow down the progress or wait till symptoms start? right now i feel great no coughing, no wheezing, trying to drop the lbs

Jane? i think what worries me and most others is the lack of money for research, seems like all going for prevention, stop smoking  which is great but the ones who have copd can just trickle on, copd is at the very bottom .HIV being top of list for research funds that is also a lifestyle choice in some instances same as smokers, however some people got aids thru no fault of their own same with smoking and copd.

even the ads on tv for sprivia makes it look like a minor inconvience, most of us including myself never heard of copd or what it was, we knew chronic bronchitis, emphysema, asthma that was it

Okay...I think in regards to the categories in my article, they're looking at 100% and above as normal and anything from 80-100% as mild COPD. Take a breath, stay calm, and do remember that numbers don't tell the whole story. I can have five different patients with 35% lung function and they all have a different level of limitations. As you indicate, you don't have any symptoms. That's good news!

Now, having said that, many docs consider 80-100% normal. According to the parameters I cite in my article, you do have mild COPD, and that's most likely why your insurance company sent you that. And I say good for them! They see the value in early detection and intervention. You should probably say, "Yes, send me all the information you have." In doing so, you'll be way ahead of the game.

You are SO right about the lack of research for COPD! You hit the nail on the head. I wrote a couple articles on this site a while back for another aspect of prevention and early detection -- about screening for disease. In my research I learned a lot about the cost of testing for other diseases, and found huge inequities in that regard. 

Again, I hope this helped you understand a bit more about this. Thanks very much for your questions and comments, and best wishes to you! 

Hi again, Anonymous,

Thank you for your questions and for sharing a bit about yourself. I'm afraid you're right about your weight hindering your breathing. At 5' 3 1/2" and 244 lbs., you are carrying extra weight that not only gets in the way of your diaphragm (your main muscle of breathing) working effectively but makes moving around harder than if you weighed less. So, in order to make your breathing as easy as possible, you should probably get rid of some of those extra pounds. 

I hope you do live to 90! Why not be optimistic?  

Chances are, your numbers will not go up significantly, if at all. That's just the nature of this beast. But by quitting smoking you slowed down progression -- big time. If you go to this page on my website http://www.breathingbetterlivingwell.com/no_butts/index.php and click on "Is it too late to quit?" you will find a fascinating picture of how quitting smoking  slows the progression of COPD. This is the Fletcher-Peto curve and it really explains it well. 

I hope this helps.

Jane.

wel my father is in advanced stages hes been in and out of the va hospital lots of times they told me 22 years ago hes only got 10yrs left, hes a fighter and still with us because of his willingnss not to give up. hes been on sterioids, c pap machine,oxygen througout the night id given up my job in wa state to be here with him in ohio. its been a struggle,he cant get on the floor to play with his grandson without losing his breath. scary thing when you cant breathe. but we are still struggling to keep him comforable. tryin to support my family after quitting my job and keeping him stable at the same time. some dotors arent trained well enough to deal with these patients, when we went to the hospital in canton the nurses were rough and and inexperienced with paitents with copd. what else can we as a family to expect to happen, hes feeling more fatigued, this morning told us kids that hes tired of fighting for 22 years......  thankyou  just wondering in magnolia,ohio

Hello Alan,

Thank you for your question. First of all, good for your dad for outliving his life expectancy by more than two times what they suggested! Next, you should be commended for your devotion to him in quitting your job and moving across the country to be near him. You will never regret this time you have together.

From what you say, it sounds like you feel he could be getting better care, and I'm truly sorry that he has not always been treated compassionately by medical professionals. That should never happen. If you're really not sure how severe he is, and you want to know more about what to expect, I would suggest your dad have at least one appointment with a good pulmonary specialist. This would at least give him and your family more peace of mind to know what to expect from here on. Here's a tip: If you're ever wondering if a doctor is a good fit, ask this question of a health care professional -- "Would you send your mother or father to this doctor?" 

I hope this helps, even if just a little bit. Please don't hesitate to ask more questions. This site, Health Central, is great, and there are also helpful and compassionate folks at my website, http://www.breathingbetterlivingwell.com

Best regards,

Jane Martin