EMPHSEMA life expectancy

[Dedee26]

So I was wondering .... as someone who has depended on the Internet to learn about this disease AND who still isn't knowledgeable enough to know what's accurate and what's not, what are people's views on the much reported 'life expectancy' for those suffering from emphsema. Personally once I found out exactly what the disease was and as I continued to experience worsening symptoms I began to develop a increasing sense of doom and gloom. Due to the lack of information provided by my doctor on my own condition I found myself searching for information on the Internet and forming conclusions and determining my long term prognosis based purely on that knowledge. The outcome, it appeared, was not particularly hopeful. In addition, without the option of stem cell treatment or lung reduction/transplant surgery, the chances of surviving past the predicted 5yr maximum was all but gone. Without even knowing the stage of emphsema I was in or what my spirometer readings had indicated I had given myself an approximate '2yr life expectancy'. THEN people. Oh yeah, it gets worse. Not to alert or concern anyone, I maintained my ever present composure, while secretly, having resigned myself to my self-determined fate, I began planning my end !!! Yip I know !! So THEN I started taking out funeral policy insurance left right and centre. As much as I could afford. Now take into account I'm solely reliant on government assistance for my income, well.... it sorta puts a slightly different perspective on 'what I can afford'. Why you might ask ? Don't worry, every time I make a payment I ask myself the exact same thing. It's largely due to the fact that when my mum passed away myself and my 2 brothers were fortunate enough to receive a, I would consider, rather substantial inheritance. It encouraged me to think about my own legacy and what I would be able to contribute to my own kids lives ( 2 sons aged 29 and 30 ) and more importantly my wee grandson, the absolute biggest adoration in my current existence, and my biggest purpose in life. Yep, luv him to pieces. But I mean my point is this, as I continue to research and learn about COPD and FINALLY NOW, participate in discussions with people who have the ability to provide real life experiences and advice based on their own experiences - well maybe this little exercise in self-diagnosis and predicted outcome - just maybe - it's absolutely and unequivacly "WRONG". Any thoughts ?? Good, bad or otherwise. I'm open on this one ....

[Badbessie]

I have seen this question on a number of occasions. Providing you make the life style changes then life expectancy can be within normal ranges. We are all so different that trying to predict your outcome from the experiences of others is in many ways pointless. Yes learn about your condition but don't become fixated on it. Research as proven that those who eat healthy, exercise and avoid environmental triggers can do very well.

[hopetorun]

It is very easy to fighten yourself with alot of miss information out there. Stick to info from health professionals or this site. I have had emphyseima for 25 years without changing. I certainly would be selective about reading. Take care x

[Caspiana]

Hello Dedee26 .

Numbers on the internet offer you a glimpse at statistics. And you are not a statistic. No one can give you an accurate estimate as to how long you have left in your life. Too many factors come into play. Progression or non progression is just so unique to each patient. Like Badbessie has mentioned making the right lifestyle changes to adapt to your needs and or continuing a healthy lifestyle is of the up most importance. Also of importance, realizing you are here and now and living in the here and now are important. Thinking and worrying about next week, next month, next year will not make you happy. Even if we were not ill, we would not be able to predict our lifespan.

After getting ill , I've realized its not the quantity of life it really is the quality. So, just tune out to those statistics and enjoy your life.

Hugs.

Cas xx 🍀

[Dedee26 in reply to Caspiana]

Thanks sweetie I found your comments refreshingly helpful !!

[y_not]

Having spent time searching the internet for the same answer I noticed that not a single prognosis ever mentions the risk of the number 39 bus mowing us down last week/this week/next week .... work on the principle that I'm going to be dead for an awfully long time but alive for only a short time - I might as well make the most of enjoying the life bit and not worry about the dead bit!

[2greys]

You're so wrong, I was diagnosed as severe 18 months ago, with just 1/3 of my lungs left, I am still working full time, on my feet all day and at 67 still have no plans to retire yet.

You are worrying needlessly, what you are doing is making your breathlessness worse with your anxiety. It is still all new to you, things WILL settle down, you WILL get used to your condition, you WILL learn to cope.

All of us here have been in the same position when first diagnosed, there is always someone here to help and advise, but remember that we are in different time zones and replies may take a few hours.

[Toci]

I was also diagnosed as severe, with a 22% lung function, and was told to expect three more years of life. That was about 11 years ago now and I am still here and determined to confound their statistics as much as I can. (PS I have already outlived the nurse who gave me the prediction.)

[BillBruce]

With IPF I was told and read in several articles that I had 3to5 years whereas correspondents to this website have reported being here after 10 years.

We are all different and the information resulting in average life spans is not always complete or correct or up to date .

Therefore I take it a day at time and regularly play on my iPad Annie singing “ tomorrow tomorrow “.

Hope this helps

Bill

[Pietba]

The internet is just about the worst place to look for an answer. Latest information gathered (and its getting more reliable) suggest that if you stop smoking - stay away from other pollutants and don't get lung infections your decline will be similar than anyone else's % wise. Only thing is we are a bit in front of the others

[Dedee26 in reply to Pietba]

Thing is, where does YOUR information come from ? I mean I agree with the statement "you can't believe half the stuff you come across on the net" BUT the whole point of me going on line was because I wasn't getting any information from my doctor. What I should point out however, is that I have placed to much emphasis and responsibility on primary care physicians when a General Practicioner isn't really the person I should be seeking answers from anyway. A long time coming ( 15-18 months since my initial diagnosis ) I have finally received an appointment with Respitory Services, the specialist section within our public health system here in NZ. It is here that I imagine I'll be given all of the information prudent to my personal situation along with general stuff on the disease itself. I agree though, I've given far too much weight to information I've come across on the Internet and placed far too much responsibility on primary care physicians for providing me with the information I have so desperately been seeking. Thank you for your contribution to this query of mine. I'm slowly developing a healthier perspective on my outlook on life and how living with this disease dosnt have to dominate every aspect of it !! Cheers

[Lyd12]

All Iknow aboutemphasema is that my dad had it. He died 30 years ago aged 79. Lifelong smoker, worked til he was 65 as a bricklayer, cycled to work. Very little treatment, some antibiotics. We are all much better informed about our health nowadays but have to wonder whether that is a good or bad thing, Dad's years of retirement were not bad either, he continued to do odd jobs for people, plastered my house for me! Died in his sleep in his own bed.

[Dedee26 in reply to Lyd12]

Thanks for your comment luv. I never knew a thing about emphsema either until a friend suggested I may have it and my doctor then confirmed it. The scariest thing for me hasn't been what I've read on line however it's been my rapid decline !! People on this site talk about continuing to work full time whereas that's not the case with me. Within a 20 month period I've gone from occasional use of an inhaler if I had to scale a steep hill or stairway to not being able to do housework without running out of breath and needing to sit down to control my breathing. I have an inhaler placed strategically in every room of my house now so I don't need to keep it on me at all times. That's what's so scary !! I'm hoping when I see specialists next month they can give me some definite indication of my prognosis and perhaps some more encouraging insight into how to better cope with this disease but in the meantime - it's a bitch !!

[Lyd12 in reply to Dedee26]

I understand what you are saying. It is not a case of you just being alarmed by what you have read, it is your actual physical decline. You deserve answers and I hope you can convey that to whoever you see next be it gp or hospital. Best wishes, Iris x

[mala59]

I have what’s called imphyzema doctors keep telling come back in six months but I don’t rely on docs because they work for the pharmaceutical companies to sell theirs drugs i turned to herbal medicine and doing me better eat dark leafy greens and juice carrots and beets and celery every day. Plus ginger in a glass of milk and olive oil it does the lungs good that’s what I’ve been doing it’s making feel better and it might cure the desease

[Dedee26 in reply to mala59]

Thanks sweetie. I agree there is a lot to be said for herbal medicine and improved diet. Be careful on this site making statements about 'cures' however. There is no known cure but I do believe that following examples like yours may improve quality of life !! Cheers

[ericgtr]

Let me share my story, hopefully someone can get something out of it. I am 51 years old and was recently diagnosed with emphysema myself, although I've likely had it most of my life. I had several spontaneous pneumothoraces (collapsed lungs) on both sides starting at age 17, with several hospital stays and smaller collapses as well. My lungs have always been "long" and had blebs (or bullous lung disease) so anytime they take an x-ray now and don't know my history they freak out a little bit lol but I explain my history and they seem okay after that.

I had also smoked for 35 years, this didn't cause my bullous lung disease, but it did cause my COPD which is now mild/moderate with FEV1 at 72%. So my case is a bit unique but in the end it's COPD with emphysema and when I asked my pulmonologist about life expectancy he said "you don't smoke any more, you walk regularly and have had this condition most of your life so I see no change in normal life expectancy in your case". He may have just been telling me what I want to hear but he sure seemed like he believed it. Realistically, I understand what it could mean but I loved his optimistic outlook.