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.
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!
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.
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
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
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.
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
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 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 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
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
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?
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.
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.
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?
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..
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
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.
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.
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.
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
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.
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
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.
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.
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,.
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.
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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