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Avatar universal

emphysema life expectancy

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
33 Responses
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Avatar universal
I have been on spiriva and Symbicort for many many years. I had thrush mouth, dizziness, pain in the center of my chest, and fatigue so severe I couldn't do hardly anything because I just could not get any air. The spiriva cost was too high so I stopped taking spiriva and for the first time in 20 years I can breath so good!!! It's a miracle from God and I am so blessed! It's been a week and half and I am already loosing weight and can do things I haven't done in many years. My hoarse voice is gone too! I haven't consulted with my doctor about stopping spiriva. I only consulted with Jesus and I trust him with all my heart! He is my savoir and physician. I will pray for all of you that have posted. God bless!
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Avatar universal
I just had a very similar experience - Except they came out saying - your heart is great but you have severe ephesema and nodules on your thyroid and lung.  

Well what the heck doe that mean.  More testing, I guess.  I can't catch my breath but have excellent oxygen levels.  

Don't stop moving - I am pretty sure that is key - I walk 3-5 miles every night after work.  Breathlessness came on after an extended auto vacation - 7 days of sitting and low activity.  

I get relief from the breathlessness when I drink lots of water - already cut my smoking down to 1/2 pack as soon as symptoms started before diagnosis came back.  Walking helps a lot.  The nodules scare me.  
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Avatar universal
Your just a caring soul....helping others caught in the same illness that you are....and trying to help.

All advice helps us with these lung problems. Thank you.

Best to you.
Helpful - 0
5962895 tn?1377461972
Hello,

I am 33 and have been diagnosed with severe emphysema. I smoked for about 9 years of my life, so I didn't understand how I could be this bad. My pulmonologist tested my for Alpha 1 Antitrypsin Deficiency, and turned out that I did have it, which is why I got emphysema so easily. 15% of people with COPD do have Alpha 1 Antitrypsin Deficiency. There is treatment for Alpha 1, which can slow the progression of lung deterioration, but it has not been scientifically proven to help.  You may want to have your Dr. test you for this, as it is a genetic disease.
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Avatar universal
I Know !  Last week I was told I had Emphysema,  I am 53 years old and a smoker.  I am still in panic !   When the Pulmonogist told me,  I asked if he had any books or Phampltes about Emphysema, and the nurses looked around and said   NO... we don't.   So I left not really understanding WHAT Emphysema was,  didn't ask any questions like How bad I have it or how long will I live,    I went there to find out about both of my lungs having Nodules in them.....  My thyroid was also found to have nodules,    He first came out saying I had Emphysema.   And the nodules?  I get a Pet Scan on Tuesday morning to began the next step of seeing if these Nodules in my Lungs are Cancer.   Having a Ultra Sound on the nodules on my thyroids on the 29th .   This is just too much to handle,  plus I have got to find a way to quit smoking......  I am already feeling defeted,.
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Avatar universal
yes, let's,  I left you a note on your profile page.
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Avatar universal
I too live in Spain and have stage 3 ie. severe COPD whereabouts are you - maybe we could keep in touch - have only recently been diagnosed after spending over 2 weeks emergency admission to hospital for dangerously low oxygen levels.  Anyway hope all still well with you.
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Avatar universal
You are so right, six months ago I was told I had emphysema, had 20% lung function, and doc wanted to put me on lung thansplant list. I quit smoking, changed my diet, and get alot of exercise ( with oxygen). I also don't take any meds that supress the imune system. Albuterul in a nebulizer 4 times a day works for me, and it only costs $16.00 a month. I feel better now than I have in years. my blood oxygen level has improved, and some days I can blow 50% in my peak flow meter. I still use O2 when I am working in the yard, sawing and splitting wood, weedeating. I  am 56 and I believe I will still be around at 80 as long as I stay active.
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Avatar universal
I am 71 and have emphysema and have it for 20 years   It is just now getting really bad --you must keep active---no one knows when the end stage will be ----everyone is different----my doctor said because I stay active I am still alive----so pay any mind to people or doctors who say 3 years to 5 years --we are all different I have outlived 2 of my doctors    sooooo hang in there all  
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Avatar universal
oops! sorry, I wrote excarbations instead of exacerbations, probably because it's such an awful thing just thinking about it messes you up...
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Avatar universal
I really wish somebody told me why ALL DOCTORS are so hip on Advair (Seretide here in Spain) when it is a known fact - that you can read in the literature and in the Internet - that this drug does not stop the decline, but supposedly just makes you feel better... Since it did not make me feel better (I have state III COPD) I stopped taking it and binned the other daily inhaler (Spiriva) too, only kept the emergency inhaler at hand which I use about a couple times a month. In lieu of these medicines I've been taking - as suggested by allmymarbles and based on extensive googling  - N-Acetylcysteine (Mucomyst in the US, Fluimil here in Spain) orally for about 3 months now and it seems to help: no excarbations so far. I'm also taking  a flavonoids drug (Daflon) with anti-inflammatory properties and believe that helps too. One final advice: don't tell your doctors you stopped taking Advair, they will not understand and will develop an instant dislike to you and... eat lots of broccoli.
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Avatar universal
What kind of reaction did you have with Advair. I am on that. I have been diagnosed with copd and i am having a hell of a time dealing with this which I am sure is only main things worse. I actually freak out I think i will end up giving myself a heart attack because of it
Helpful - 0
2118565 tn?1334738337
Hi all
I  was born with emphysema or blebs (bulei) on both lungs and had chest pain pretty much my whole life. At around 15 I had my first full blown collapse on the right side, and my first introduction to chest tubes.The Drs decided to adhear the lung to the chest wall with silver nitrite. (That almost killed me).  Then I complained for the next 10 years of chest pain on breathing and shortness of breath a few times a year. The Dr's could find nothing wrong and the earlier collapse was an anomolie and would not happen again.
At 25 the left side collapsed and treated with chest tubes. For the next 20 years I had many many doctors and specialists. yet not one could find the problem.
At 45( and 10-12 chest tubes later), the entire respritory system collapsed with only the bottom lobe on the right to keep me alive getting very little O2 and theydid a resection on the left lung taking the entire top lobe. It was a great relief by taking the worst part of the lung and stabelizing me for approx.5 yrs.( Its like cutting dead leaves from a plant and the plant survives.) And now I am back to where is was at 25-45. I know something is wrong, but cannot put my finger on it. Th Drs say I'm ok. The tests I have had (one only a month ago) showed no decline over 2 yrs and my 02 saturation is 98, which is great, but with the pain and exhustion they are missing something. We all know I have severe emphysema, but it is not the same as if it were caused by external pollutions. It progresses much slower and is genetic and can skip generations. There is a gene marker for this (available for about 5-8 years, mabe 10)
If you have never smoked, worked with asbestos, in a bakery, popcorn factory etc. and have emphysema, I would strongly recomend  all your family members get the blood test.
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Avatar universal
My father has emphysema but tries to hide how bad it is from me. He is 80 and cant sit back in a chair and his breathing is quite laboured.  I know he is on tablets andf has an inhaler and when he gets stressed about anything it is quite hard for him to breathe.  He doesnt need oxygen but may get to the stage where he does. He said I should have a key just in case - does that sound like its so bad it could be severe emphysema - I dont know what to think.

Cheekymonkey
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1 Comments
This post is 7 years old, so maybe no point in my comment:  This 80 year old man most certainly needs oxygen NOW.   He will likely rebel at the start, but will soon appreciate having it.  I know.  
Avatar universal
I received a call from the nurse last week to give me test results. I went in because I have had 4 back surgeries in the past 4 years and have still not gotten my strength back and for the last 6 mths to year have been short of breath and tired. I had lost 40 lbs from the back surgeries and was concerned about why I am not getting any weight back, and loss of appetite. I am still stunned about the results, yes I did it to myself, 42 years smoking and am 55 years old. I have not told anyone and do not feel like I want to go to the doctor for more info. What should I do next?
Best to all.
JPM
Helpful - 0
1 Comments
this is 2019 I have just joined I gave smoking August 22nd 2018 I was in hospital  I couldn't breathe properly that was due to my Thoracic spine and my Lumbar spine  Mussel which affects my stomach so they kept me in Hospital for the night put me on pain killers and did some tests  heart blood pressure  and later that morning an X ray  of my chest the Nurse did not say anything so I figured it was okay anyway had a letter to give to my Doctor had my last smoke outside the Hospital and read the letter when I got home  well that scared me Hyperinflated Lungs collapsed Diaphragm and some   Emphysema but everything is coming right will never smoke again  I have Osteoporosis in my spine 3 fractures in my Thoracic and (1) fracture in my lumbar spine   and also have the bones of an 80 year old  and I am 66 year's old  so just have to take it easy but stop  smoking absolutely wrecks your  body inside and out  please if you haven't give up  50 year's for me I am lucky I have a good Doctor ...
Avatar universal
Hi danny. Are u still around. Just thinking of u
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757137 tn?1347196453
Here is the question I should have asked in the first place, "What per cent of predicted is  your FEV1?"
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1785282 tn?1314895705
Hey Dan. I am a 57 year old male. I too have emphysema. I am stage 4. I was diagnosed 6 years ago. I have been on oxygen for about 1-1/2 years now. I dont want an expiration date. I wanna live while i'm alive. Look into pulmonary rehab (ask your Dr). I have been in it for 6 weeks and I feel much better.Leg strength goes hand in hand with upper body strength to help you breath better. Good luck to us all !!  Lynn
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Avatar universal
Hey, My wife went to the specialist today after diagnosed with empysema> the doc said it was the worst case of a 39 year women in her career..She said she needed be put on donor list...
I knew for years she had problems..she has been caughing like crazy..without  being able to breathe..She went home to Norway a month ago and i guess the plane ride did something to her lungs and she got ammona..thats how they found it..Also she has the A-1 thing i believe...
Is it possible to recover now..?????????
She has been smoke free for 22 days..Me as well..We want a child so bad and was in progress of doing that..Is that a problem as well.??
I might sound stupid and understand it might be..She can still walk an hour without a problem but sleeps more..only are 130 pounds and have fatigue..
Her mam has stage 4 and are on oxygen 24 hrs..Lived for 10 years with it..
Worried as hell...
Chad..Hope you will do good, so young....Good luck to you all..

Bjorn
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Avatar universal
i just got the results of my x-ray and the doctor said i had hyperinflated lungs...my doctor is now pressing for me to get a pulminary test done...what is this and what does it do?? right now my shortness of breath is more like when you yawn and take a deep breath except sometimes i have to breath deep several times before i actually take it....but otherwise i climbed 4 flights of stairs the other day and was only moderately winded (though my heart was beating pretty fast)...the difficulty of taking a deep breath (with yawning as well) is worse after i have eaten...anyone know why?
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Avatar universal
I am 67 years old, smoked for 50 years and diagnosed with COPD,
emphysema in 2003. I continued to smoke off and on until I suffered a pneumothorax(collapsed lung) innovember 2009.

I felt minor pain in my chest but could feel the air escaping from my lungs. I did not want to alarm my wife so I drove for about ten minutes and then pulled into a lot and called 911. The fire department
paramedics arrived in about five minutes and an ambulance in a few minutes after. By the time we reached the hospital, I was unconcious.
I awoke two days later with a ventilator tube all the way down my throat, my hands and feet secured with straps, so i could not remove or dislodge the ventilator.

I spent the next 49 days in ICU because I knew and the primary thoracic surgeon knew that I probably would not survive a surgery due to my significantly diseased lungs.
I was on oxygenthe entire time, received breathing treatments and several antibiotics for several infections including pneumonia which I acquired while in the hospital.
I was on a negative pressure ventilation device except for the last three days of my hospitilazation when my lungs re-sealed themselves without surgery. For 3 or 4 weeks I had three tubes inserted into my chest cavity to draw excess air out so my lungs could reinflate. I was on pain medications as the tubes were quite painful.
I was discharged the night of January 4, 2010, I had been admitted on November 16,2009.
When I left the hospital I still had one chest tube attached to a Heimlich Valve and two feet of tubing. I was to weak to walk on my own for several days and had nurses, occupational and physical therapists coming to my home for three weeks.
Thank God I have a wonderful wife who was at my hospital bedside every day and is a dedicated an accomplished caregiver.

Prior to 2002 when I first noticed my breathing difficulty i had enjoyed excellent health all my life. An enthusiastic physical fitness buff , I played tennis, rode my mountain bike, swam , and hiked. I had been a parachutist and scuba diver in an elite Marine Corps unit and was a graduate of the Army Airborne, Ranger, and Jungle warfare schools, the Marine Corps escape Evasion, and Survival school and The U S Navy Underwater Swimmer School.
Now, my physical ability is extremely limited. I am on oxygen several hours a day and use inhalation medications and a nebulizer.

No one ever told me smoking could cause this response. I had been concerned about lung cancer but had never considered COPD or emphysema.
I hope all smokers out there will read this and finally have the courage to quit. COPD and emphysema are death sentences, it is just a slower death.

Les H
Las Vegas, NV
***@****
Helpful - 0
757137 tn?1347196453
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.
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Avatar universal
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?
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Avatar universal
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
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