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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Confused-Is COPD ALWAYS fatal?

When I was first diagnosed with COPD one of the first things my EX- lung doctor told me was I had COPD. He then told me I had severe COPD; He told me that COPD is ALWAYS progressive and ALWAYS fatal. After two more tests he told me I had 2 years to live. I fired him.

BUT>>>>>>>>>>>>>>>>>

Whenever I read about COPD, there is almost always a kind of disclaimer, such as this one:

"Quitting smoking won't reverse the condition, but it might stop COPD from getting worse."

My confusion: if COPD is a disease with a 100% mortality rate; why always throw in that sneaky disclaimer?

My FEV1 was 37 at 6 years ago. I haven't been tested since. 6 years ago I could hardly manage to walk 30 feet without sob. Now I walk for miles and miles and go up and down stairs.
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Any and all comments appreciated. I am so damned happy I found this site. For 6 years I've had no one to discuss things with. Only internet research and my family doc every 3 months.

thanks,

dale(tinster)

Replies

debib399
debib399

Dale,
I have had COPD for 6 years or more. My FEV is 49 as of August.
My Dr. told me the same thing, but he never told me I was going to die. My aunt had severe COPD and one lung removed, she was in the 30 range for years. She quit smoking and went the other day for another test and her lung function was way up and she's feeling great and she is in her 70's. I personally don't see how a Dr. can tell someone how long they have to live. They are not God. Sounds like you are really doing better.
Hugs,
Debi
deleted_user
deleted_user

Glad your doing well Tin, I've read horror stories about how often people are misdiagnosed and told they have COPD, when actually what they have is CLAP....just teasen, serious though about the mis-diagnosing, hell, you could have bronchitis or back then, simplex pneumonia, both very manageable, just keep up what your doing, if you die suddenly I get your boat though!
deleted_user
deleted_user

Dale -
IMEO life is a disease that has a 100% mortality rate. Everything else is a crap shoot.
What appears to be one of the problems with our medical profession (along with major portions of the rest of our society) is the tendency not to think things through, avoid doing research and provide competent answers that can be backed up with science and math. And that is if they are being paid to do it. For free? I'll bet on getting betterinfo through common knowledge and urban myths.
COPD is nothing but a container for several diseases that have similar symptoms. Clinical tests (xray, CAT scan, spirograpy, and blood tests can determine the exact nature of the disease, be it emphysema or bronchitis. they can also determine the relative extent and severity of the disease.
They cannot tell you how long you will live. Anyone that thinks they can is a liar and/or a fool. Only God has a line on that.
Sounds like your doctor got lazy and lied. Deserved getting fired. Mine gets a bit lazy, I remind him what I pay him for. They are human and capable of making mistakes. There is nothing wrong with questioning their judgement - keeps them on their toes.
$0.02...
Hugs,
Dennis
deleted_user
deleted_user

I'd add a dollar to that 2cents for intelligently adding;

"There is nothing wrong with questioning their judgement - keeps them on their toes."

Priceless!
deleted_user
deleted_user

Makes em wonder if they wasted alot of time and money in medical school, too!
Sue825
Sue825

Dale, I'd be very interested to see what new results on a PFT would be for you. With all your exercise and good care, I'd be surprised if there wasn't significant improvement. It can happen!

My pulmonologist is of the opinion that with the right meds, no smoking, good exercise and eating, we can halt the progression, or even improve things. I know that's true in my case.

Yes, if you don't take it seriously or do the right things, it's fatal. But we are just as likely to be hit by a truck, too.

I firmly believe that attitude is everything. Keep up the great work!
Hugs, Sue
deleted_user
deleted_user

You begin to die the minute you are born. The only thing known, so far, that is an absolute is that if you were born you will die.

It may be you have COPD, but die of a heart attack. Then again, you may have diabetes but die of pneumonia. Sure COPD is a toughie, but your odds of living years longer are greater than say, if you've been diagnosed with a terminal brain tumor.

So, for me, I'm just gonna focus on living this life the very best I can then, who knows, maybe the afterlife will be pretty good, too.

None of the doctors that have treated me have given me any time line so far....nor do I ask. Figure that's up to my Maker, and apparently, He's not finished with me yet.

I do believe by taking care of ourselves, and though
we may not cure COPD, we can arrest its progression while at the same time understanding our lungs age just as the rest of our bodies.
indynanna
indynanna

great insight jams.....i know at first i felt like i had a time stamp on my forehead, but what you stated is so true, we begin dying as we age. Hec, in some ways i think we are lucky. I say this because we know we have an incurable disease and have the advantage to live life to the fullest as much as we can, we appreciate life,we are conscious to say the "i love u's", smelling the flowers along the path of life, appreciating each day for the blessing to breathe and be a part of it... whereas others dont have that same appreciation and go thru life miserable. I really try to think of this as a second chance to another type of beginning rather than an ending. Yea, it takes meds to keep me feeling okay, and i have to pay more attention to my health, weight, etc...but im alive.
deleted_user
deleted_user

When I was first diagnosed with COPD, my doctor somberly said to learn to enjoy each day one at a time. At first I thought he was pronouncing a death sentence of sorts upon me, but later, on I discovered he was only giving me some much needed advice that was actually along the sage divine insight of the Great Physician.

One day at a time. Do not be anxious about tomorrow. Slowing down the pace of life elongates one's measures of remaining breath and lessons the strains of stress on one's body, soul, and spirit. Both the good doctor and the Perfect Doctor were spot on.

I'm still testifying to their spoken truth.
deleted_user
deleted_user

Dale: LIFE IS FATAL. Horror stories about my family not believing me----that I could not breathe, etc. Told me I was a baby & lazy.
Finally, an MD diagnosed me. Then, Pulmonary Doctor said an MD was not qualified to diagnose, so I did not have COPD. 5 hours of medical torture: blood gas; heart echocardiagram; Pulmonary Function Test; chest x-rays; on and on. That Pulmonary Doctor never spoke to me after that many hours of tests. I asked at the "check out" desk of the Pulmonary Clinic what the result of all those tests showed. The receptionist said it was a number code,
and she did NOT know what the number code stood for. I waited while she went and asked around. LOL She comes back and says that I have COPD. Um?? Next up; 3 months later: Pulmonary Doctor tells me that I have ONE year to live. He tells me that and I leave, drive home, and sit alone with my little dog. No one to talk to.
I am still alive. Years after being given ONE year to live. I defy all odds; and my new Pulmonary Doctor told me I could not have raised my FEV1 that much. Really? Started around a 22 FEV1,
years ago. Last PFT test I was a 48 FEV1. I AM smoking.
Higher FEV1 while smoking; 10 years after diagnosis? DISCLAIMER: NO ONE DO ANYTHING I DO.
How does one smoke cigarettes; walk a block at first, then work up to walking 2 miles? How does one that keeps quitting cigarettes and picking them back up----still live? How does one with an FEV1 in the gutter, raise the FEV1 up so much?
ANSWERS THAT I PERSONALLY KNOW: I am too stubborn to believe what the experts tell me. I decide to act in an oppositional
manner. Instead of getting worse and dying; I get better and live.

LIFE IS FATAL. One thing is certain; we will all die. When we die; or how much time we have left is UNKNOWN by any medical professional. The previous statements are my opinions (solely) and not the opinions of anyone but myself. Blessings.
tasha946
tasha946

Wow--you all are such an inspiration to me!! I have never met people with such determination, intelligence, love all in one place. Thank you so much for being my new friends. I can't imagine being diagnosed with COPD and having nobody to turn to. I was lucky and came straight here--very lucky.
I was diagonised with mild emphy. recently and am not on any lung meds. I quit smoking and am increasing my exercise program. Are there vitamins, meds that I should be taking to keep the progression of the disease at bay??
thanks and hugs to all!!
tasha
deleted_user
deleted_user

OK OK hold the train! NO one told me not the doctor no one...until I arrive here. I didn't know a stupid thing until I started reading and listening to you all.
I had no idea that COPD wasn't more then the commocial on TV showing people dancing around being happy and they said they had COPD?
So now I learn I'm going to die? So didn't we all know someday we were? OK now the monkey is coming an what now?
What will get me first?
The race is on and yes Indy I do have time management on my side I can take time to look and smell.....except not in my backyard that is where the dogs poop and it don't smell good.
LOL
So for me......God will choose and I wil go. But until then I am kicking and scraching all the way........and no one PUT a stamp saying today!
God Bless you all and that is what I feel.
deleted_user
deleted_user

Tasha yes,

There are foods to eat and foods to avoid. There are vitamins to help the heart and lungs A good Eastern medicine herbal is "Clear Lung" and it's sold at most vitamin stores. Dried cranberry and blueberry and raisins and almonds and walnuts can be part of your daily diet.

If you are not taking a Statin Pomegranate juice will help remove plaque from you arteries and veins and thus increase your blood flow. I'll send you a private message on other stuff.

regards,

dale(tinster)
deleted_user
deleted_user

Hi Everyone,

When I was first dxed I sought info/support on the net. One of the main topics/posts was 'How to prolong your life' It started out by telling everyone, that trying to preserve oxygen by sitting back, doing nothing, was the REAL killer of PPL w/ COPD. There are 'low stress' exercises, that can help, if you aren't up to 'full' exercise programs.

I, put the CD they sent me in a drawer & proceeded on w/ Life. Now 6 yrs later, I find this 'family' Inspiring! Personally, I am guilty of only walking to & from the comp to kitchen for coffee. That changes TODAY! I am heading out to ride my new bike as soon as it gets lite & a bit warmer. :) I rode some over a yr ago & me & my buddy rode for miles. :) I gotta buddy up, though. Hope my GF is up to it. :)

I DID ask my DR about exercises. More then once. He still insists I don't need to start a regimen at this point. Well, I'm ready, even if he ain't. :)

Course I too am still smoking. Have cut back. I even managed 24 hrs w/out last Sunday. :) I will keep trying. But, I gotta go 'cold turkey' & my willpower absolutely sucks. :(

ONE DAY AT A TIME! It's easy for ME! I've lived that way ALL my life. :)

Love Candi
jazzkeys
jazzkeys

I thank you all for this information, I too knew nothing until I came here, no one ever said anything to me about dying. Dale I will try to eat these foods and plan on getting a bicycle so I can excercise,which I don't. It will certainly help my breathing and my muscles. I try to live one day at a time and hopefully I will be around for awhile. hugs Terry