emphysema life expectancy

[DanarCorseth]

I am a 40 yr old male // smoked for 22 yrs and have recently been diagnosed with emphysema apparently stage 4 because I have already been put on O2 // currently taking advair twice a day and spiriva once a day. honestly // Pissed at myself for the damage I have caused myself and the future pain I have caused my wife and kids // The FEV1 test i have had says my lungs are providing capacity of a 65-70 yr old // I am a firm believer in prepare for the worst and hope for the best // in this case work for the Best // I was wondering what type of Longevity / Life expectancy I can "honestly" look forward to say "BS" so I can shape my mental attitude for more. I know this is all combobulated jibberish to some but this is recent and my mind is racing in 200 different directions and I want to be prepared for myself as well as for my family.

Thanks for any input
Dan

[JerseyGirl0111]

Have you quit smoking?  I didn't know they had emphysema stage 4 - but what do I know.  I have been diagnosed with moderate emphysema.

Did this all come about without warning?

Julie

[jonkob]

Yes, didnt you have any signs? I mean, you couldnt have just gone to the doctor and next be put on O2 ? I would imagine you had SEVERE shortness of breath just walking, yes ?

[little_weed]

Hi DC,
Just to reassure you, it is not jibberish! My mind is also racing with a million and one things I want answered, so I can plan ahead. I know that I want the same questions answered as you. I am 54 and just been diagnosed, but don't know how bad til I next see the consultant for all my results. However, I do know it won't be stage 4. Yet.
You have my support and best wishes. I shall be watching this discussion for input.
Good Luck DC!
J.

[JerseyGirl0111]

Hi - so sorry I haven't been on the computer this week.  No - I am not on oxygen YET...and I said yet.. I did go to the pulmonary Dr. and my tests were normal, but my CT Scan did say moderate emphysema.  But I have had a bit of shortness of breath upon exercising for the past 30 years.  

How are you doing?

Julie in So Calif. :)

[Feisty40]

Hi Dan

My husband (60) is end stage and on O2 24/7.  A good website to look at is Breathless with COPD set up by John Kirtley and continued by his friends.  The website offers answers to a lot of questions and tips and advice on available treatment, things to ask your doctors etc.  Give it a go and see what you think.  I find the site really useful and re-visit it from time to time.  Good Luck and Best Wishes

Feisty40

[jimjim137]

i just been for xray  and breath test and both show the first sign,s of emphysema i did not go to see about that, i went to find out if i got any  asbestos as in my younger days i did work with it twice ,good news  nurse said no canser or  asbestos  BUT your showing first signs of emphysema  at first did not hit me but after a few day and finding more about it yes it has sunk in now ,i am 52 smoked 34 yrs so yes i did it to myself but only i can help myself to stop any more damage than what i got ,so as from the 6th of august 2009 i stoped smoking and i will never smoke again it is hard to quite but i love my wife and i am a few years younger than her and she is the reason i will never smoke again so this is a message to all with early emphysema YOU HAVE GOT TO STOP SMOKING TO HELP YOURSELF  all the best jim

[allmymarbles]

Were you put on oxygen before or after you took Advair and Spiriva? Advair was killing me (literally) and I quit Spiriva after only taking it briefly because it turned my lung secretions to glue. It is very drying.

Anyway, if you went on oxygen after taking this garbage, find another doctor.

[Chad16]

hello, i'm a 16 year old and have emphysema, can anyone tell me how long people live with emphysema? i cant breathe good if i walk like 50 ft., and i am very under weight at 115 lbs. at 6" tall, i also have chronic bronchitis, scoliosis and a muscle disease

[DanarCorseth]

Sorry it has been awhile.

Jerzygirl, No I have not quit yet but am down to 5 cigs a day after smoking pack to two packs a day. So Slowly getting there.  Figure by the end of October and I am done with them.

Jonkob, Yes there were signs: shortness of breath (put that off to lack of exercise), Pnemonia (pneumonia) 4 times in the last 5 yrs, Colds everytime one was around.  just didnt put the pieces together.  Went to a new doctor because of a change in insurance and luckily he looked at my records (just so happened he was a friend of some of my wifes relatives and they had noticed things like the colds and pnemonia (pneumonia) and that i wasnt as active with the kids like i used to be).  He didnt give tell them about me but i came up in conversation that I was seeing him.  He then did a full physical and had me take some "test" then told me i might have but sent me to a pulmonologist to be sure and 3 months later...... you know the rest

Fiesty 40, yeah im on O2 24/7 as well, its a bummer feeling.  Lost my job because I ran out of FMLA time and not many people want to hire someone who isnt going to be around all the time and have an oxygen tank with them.  Dont know what your husbands attitude is but just let him know you Love him no matter what.  Thank God my Wife and Kids are having that attitude with me.  Feels bad enough not being able to provide for them but if their attitude was different ONLY GOD knows what I would feel like or do then.
As for that website you mentioned to you have an exact web address you could post on here cant find it and imagine it would do good for all looking here.

jimjim137, luckily it sounds like you caught it early.  You cant heal it and it wont go away, youve got it now but by stopping the way you have you have slowed it greatly now because you arent applying any more "assistance" to the disease.  Good for you on quitting so quickly, Cold turkey has never worked nor any of those "drug assist".  I have the will power but good God its a big pain in the BACKSIDE.  The urges get so strong sometimes especially with the Stress.  And when you used them as a stress relief for so many years they become a crutch that is hard to walk without it you know what I mean.  But really GOOD FOR YOU.  

allmymarbles, great name, no the advair and spiriva were started about a month before the doctor and I knew exactly where I was.  So we could try and make the breathing easier.  and last month I stopped them both for about the same reasons.  When the sputum comes up like a "sticky paste" yeah you could almost use it like a "glue" but ughhhhhh.......
and hard to cough them up sometimes.  

Chad16, How bad is the emphysema, are you at early stages or further down the line?  
Honestly your 16 yrs of age and Hopefully you have one or several doctors (with all you have going on) that have the attitude that "This does not happen to one of his/her patients at this age!!!"  Believe me when I say this that there are more Drs out there that would "kill" (not literally) themselves to not let things get worse for you (someone your age).  Those of us a "little" older have had our fun but your still a "kid" (age wise).  I imagine you have had to grow up a bit faster than most your age - that is coming from experience from a brother with a heart condition at the age of 3 and on(passed away at 33 of a HA God rest his soul), and from my youngest daughter (10) who had/has/had? a VSD (ventrical septical defect (a hole between 2 of the chambers in her heart)).  
My suggestion One (1) at a time.  Beat them One (1) at a time.   With support from family friends and Drs. you will get thru it all but One (1) at a time.  
As for answering your question from what I have gathered about life expectancy so far (and that is little) is that it depends on: 1. how far along you are, 2. other conditions and status (cause your body is fighting multiple things) 3. and Most, MOST importantly YOUR MENTAL ATTITUDE.  Not anyone Elses YOUR MENTAL ATTITUDE.  example: My grandfather on my dad's side had a heart attack at 50 yrs old Drs told him he had maybe 6 months left before he had another one and passed on.  He was not the type to say this but he did.  He told the drs to Foff and they were full of BS.  He went out got active and died at 66 yrs old 16 yrs longer than the doctors said.  My youngest brother mentioned earlier.  Drs. told my mom and dad and him that he probl. would live past 17.  didnt die until 33 and leaving a beautiful daughter and wife as part of our family.  Both of their Attitudes were "Yeah. right..... Watch this you idiot!!!!" So as I said Life expectancy has a ton to do with ATTITUDE.  My Kids are still in elem. and jun.high.  I expect to be around until they are both out of college and are married and have kids of their own.  I Want to be a Grandfather myself someday.  Even though I am in later/end stage I will be here for those things.  All in ATTITUDE.  
Sorry didnt mean to lecture
Danny

[DanarCorseth]

Chad 16,
Was rereading my post after it showed up.  And it got me to thinking about something else as well.  With out giving any "personal" information what State do you live in?  Also are you in pain frequently or alot with everything going on?  

I have been doing some reading on emphysema and breathing conditions and seeing what types of Meds are out there for all of us.  If you are in a state that allows it Medical marijuana may be something you could ask about.  1. it relaxes your body and breathing to an extent. 2. (especially in your case) it causes an appetite.  If it is not legal in your state there are some derivatives out there based on medical mj, cant remember there names at this time (one starts with a D and the other an M both ending in "NOL" ) but they are based on the THC to help increase appetite as well.  There are a couple studies on them on the Net and I think the one with the M has already been approved by the FDA and the one with the D is or was in testing.  

No I am not a nut people just trying to look for everything/anything that will help me and anyothers that are similar.  
If I lived in NM which is just 30 miles away I would be pushing the state for it because COPD/emphysema are one of the things they are looking at to add to the medically approved list.  I have found it does ease my breathing and allows me to breath without my O2 tanks.  But I live in a State that does not allow it so when Home I follow the States laws until we get it passed and People in our State are working on getting it approved.  But until then......

Seriously Chad with your other conditions and your height and weight ask your doctor if it or the derivatives might be a benefit for you to help with the weight gain and not have to go with steroids.  I imagine you may be on steroids now to help with the weight issues right?

Again sorry for the long "WINDEDNESS"
places like this are the only place I can be "LONG WINDED" and on a Soap Box now
LOL
Danny

[Virginia_757]

So from this discussion I take it that having little to no information out there isn't just a regional thing. Why are our pulmonary doctors not giving us any information? Isn't that their JOB? I go see mine once a year because the law says I have to in order to get my prescriptions refilled. That's it!

And how can you know what to even ask if you don't know anything about it? I am so disgusted with the lack of guidance and information for us all. Will exercise make it better? Is there any other type of medication or herbal supplement that will build our lungs back up? Why do you have to be at death's door to get a lung reduction operation? If it were over large breasts or flabby skin we could get it removed. Why do you have to be on 24 hr oxygen to even be considered for this surgery. Seems to me a stronger person would have a better chance of recovery. If I could go in and have the lower (flabby, think overblown balloon) part of my lungs removed so that the healthy part could fill with and expel air properly I'd do it in a heartbeat. Why don't we know how much time we have and how to improve the time we have left?! Sorry for the run-on, but why are we all in the dark, searching the net to find answers?

[allmymarbles]

Looking back, I started to develop COPD when I was 55. I was diagnosed about 10 years later. I am now 80 and have moderate COPD. I have no other ailments, although I have had a very bad reaction to Advair. Had I stayed on it, the Advair would have killed me. As things stand now I am nowhere near death. I guess it depends on how fast your disease progresses.