I'm 28 and have been diagnosed with emphysema. How long do I have to live?
Young lungs don't matter: I'm 28 and... - Lung Conditions C...
Young lungs don't matter
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johngpastures
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36 Replies
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Hi there the answer to that one is no one knows it all depends on what stage your at. And what you do with your life if you look after yourself I.e don't smoke eat right take your meds and exercise regularly you could live as long as a normal healthy person. I am not saying it's easy trust me I know how hard it can get. I am only 37 myself and was diagnosed about 5 years ago.
I'm still trying to figure it all out myself. Being only 28 I would assume you only have it mildly? From what I understand if you stop smoking, excersize, try to stay away from smoke and sick people so you don't get chest infections and if you do get a chest infection or cold hurry to the doctor for medication, your lungs will lose function similar to that of a normal person.
In my research I have read mild emphysema does not affect lifespan.
I'm betting you'll be fine if you quit smoking. If you continue to smoke it will definitely put you in an early grave.
There's a lot of good advice and caring people on this site, google is your worst enemy. Utilize this site for your questions. I'm sure others will respond as well.
Take care and best wishes.
Hi. Welcome to this amazing site! I agree with the first two posts.
Dr google is a no no, the people on this site have first hand experience with lung diseases, we will all help where we can and give support with a laugh along the way. Lots a love LeeLee. X
Get tested for Alpha-1 Antitrypsin Deficiency immediately! Anyone diagnosed with emphysema under fifty needs to be checked for this rare genetic disorder.
in reply to lizgentrycharles
I agree 100%. Doctors should be testing for this when lung disease is diagnosed so young. If you are under 40/45 when diagnosed alpha 1 should be tested for. It is quite rare but it is still a possibility. Demand your doctor does the test. It is only a blood test so not onerous. x
Hi and welcome. You have the same life span as anyone if you look after yourself, ie no smoking, take prescribed meds, exercise and try to avoid infections.Take care Xx
Good answers from everyone.I was diagnosed in my 40s & am now 70,so don't be to glum,just be sensible! xx
Hi, im new in this site and newly diagnosed with emphysema myself. Im 55 however and smoked for 38yrs. My doc who is brilliant told me stopping smoking, walking and exercising, eating healthily and avoiding ill people will all prevent it from getting worse. It cant get better but it can be halted. Dont spend the rest of your life worrying about this disease, just take your meds, imorove your lifestyle and live. Stop smoking............... anne x
england in reply to
Hi yer been worrying and no sleep as got told have it im 39 like the comment helps a bit thanks
You are just as likely to die of a totally different cause. There are plenty of COPD sufferers in their 80 ' s. It has not stopped them from out living the 3 score years and 10. Eat healthy. Exercise regularly. Attend your annual check - ups and there is no reason why you shouldn't be joining the over 80 ' s club in 50 yrs time.
Regards Rib
Your too young to have emphysema please ask for a alpha one antitrysin deficency test if you are struggling pm me you can obtain one yourself and do the test at home quick and easy to use with results back within 3 weeks....this is recommended due to your age and symptons and the inept attitude of who ever is dealing with you ! Good luck better you rule this disease out one way or another I wish these doctors would wake up!
Above is link to obtain one, good luck please pm me on anything you need to know once you are diagnosed correctly
That is a million dollar question. At 28 you have yet to reach the age when all pop stars seem to die (37). There are more things out there that can kill you than you lung condition. Your lung condition shouldn't really effect your life to much. Follow advise, keep looking at whats happening in the UK....forget the USA...and get on with living. You are obviously suffering at the moment to have gone to seek a diagnosis but the big difference is your mind set. You can go down the "Woe is me" route and become a professional invalid or you can kick it around and live a full, normal life. A few basic adjustments should see you doing everything you want. No smoking, keep away from smoky or dusty atmospheres and sort out what triggers your attacks. Then it is just a matter of a healthy life style....good diet, fruit and veg and exercise to keep fit. I was diagnosed with COPD when I was 45. Had smoked all my life, a lot, lived in dust and fumes and was overweight. It was initially controlled by medication but then I took hold of it and became it's master rather than it' slave. I am 66 now and still here. Infections still hit hard and take some fighting back but I do. I continued to smoke too....I was a truck driver and boredom was a problem. Now my exercise is home based but still onward going, my diet is good, my cholesterol is rock bottom without statins and my ambition is to father twins when I am 99. The diagnosis is a wake up call not a death sentence...so listen to it and act on it....the active way.
I was diagnosed in my late 30's and am in my late 60's now. It depends on your life style choices though. If you smoke you might not last too long.
If you don't get hit by a bus, drown or die in a plane crash, you've got another 50 years plus if you stop smoking. This is not a death sentence, it's just another disease that has to be managed. However, as several on here have said already, get a test for Alpha-1 Antitrypsin Deficiency , you're very young to have been diagnosed with Emphysema. or at least - get a second opinion! Good luck. XX
Well johngpastures according to those figures in just about fifty four years you will have caught me up age wise and just think of the possibilities of the improvement of life you will be offered.
You are a lucky man, I stopped smoking after over fifty years of the weed and that saved my life. . . . . you have even more possibilities than most of us. Just listen to the advice from the friends on here and
live a long and decent life.
Hello & welcome to the site.
I well remember how anxious I was when first diagnosed. Perhaps you need to chat things through with the BLF Helpline nurse.
But just want to say, I am in my 70's with severe copd (actually, my lung age is 114 but the last test showed I have crept into moderate now) I don't expect to die any time soon. My mum had TB in her 30's, this left her with severe breathing problems. She was remarkably indepedent & died last year at 92. I would ask your Dr for an alpha one antitrysin deficency test, as has been suggested & follow all the advice about healthy lifestyles.
Take Care, Margaret
Frankly, no one knows how long they have to live...; however, if you give up all the nasty habits that make being your age so much fun, you stand a better chance at growing a lot older than you are now..., unless you get hit by a truck, that is.
Stick around and read some words of wisdom from some us old goofs and see if you pick up on anything useful; I'm 72, have emphysema, am still recovering from a NDE about 2 and a half years ago and I improve daily...., SO....,
There you have it, whippersnapper.
Well ,my sister and I have never had a cigarette in our mouths she is very poorly with her lungs and kidneys .I have my own problems with lung disease although Im a lot younger than she is .She is 73 but I do t know if she will make much longer and all because our parents smoked ..a look after yourself is all I can say .And if your smoking stop .
1.Vitamin 'cure' for emphysema
A vitamin found in eggs and milk could hold the key to curing the potentially fatal lung disease emphysema, new research has revealed.
British scientists have found that retinoic acid, a derivative of vitamin A, can reverse damage caused to the lungs by the previously incurable disease.
Tests on mice have found that damaged lungs have been repaired to normal by the compound, which is already used to treat chronic acne.
Trials are now being carried out to see if it could have similar success if used on humans.
Emphysema is one of the most common respiratory diseases in Britain and causes progressive damage to the lungs, which can eventually kill. There is currently no cure.
Early symptoms include breathlessness but sufferers can be left gasping for breath and reliant on oxygen.
It usually affects older people and is generally the result of long-term damage to the lungs caused by smoking or exposure to other harmful substances.
Professor Malcolm Maden, of the Medical Research Centre for Developmental Neurobiology at King's College, London, said his team's research held out "great hope" for the development of a treatment for emphysema in humans.
He said the retinoic acid compound worked on tissue cells in the lungs, causing them to regenerate.
Emphysema begins with the destruction of tiny air sacs (alveoli), which creates permanent "holes" in the walls of the lungs.
As the air sacs are destroyed the lungs are able to transfer less and less oxygen to the bloodstream.
Prof Maden said that during the tests on mice his compound made the alveoli grow back again until they returned to normal levels.
He said: "We saw quite dramatic results. It is potentially hopeful for emphysema sufferers, and for premature babies who often suffer from loss of alveoli because of treatments given to stimulate lung growth."
Clinical trials have begun in America to see if the treatment could be used on humans.
A spokeswoman from the British Lung Foundation gave the research a cautious welcome.
She said: "The BLF welcomes any interesting developments in research which may offer new options to patients with COPD (an umbrella term for chronic bronchitis and emphysema), a severely debilitating condition.
"However, the BLF would like to examine this research to understand fully whether this might be a viable option in the future.
"Currently, COPD is the fifth biggest killer worldwide and is the only major cause of death increasing in the UK."
The research was based on a chemical compound of retinoic acid taken from Vitamin A, and not from a dietary intake of the substance.
I am glad it is working for your wife and the five others you have advised of this. As previously mentioned to you on another identical post. Taking to much Vitamin A has a negative effect on the liver. Please see academic paper below that actually suggest its worsens COPD symptoms. I dont dis-believe you I am just concenrned by the advice you are offering and the potential damage it can do.
thorax.bmj.com/content/59/3...
So t works in Mice not In Rats
Results: In contrast to the rat, administration of all-trans-retinoic acid in these murine models did not improve the emphysema. Moreover, worsening of emphysema was observed in TNF-α transgenic mice treated with all-trans-retinoic acid. The level of keratinocyte chemoattractant (KC), a CXC chemokine, in bronchoalveolar lavage fluid was increased in TNF-α transgenic mice following retinoic acid treatment. These data raise the possibility that retinoic acid causes deterioration of emphysema by promoting inflammation in this model.
Forever and a day.
I was diagnosed in 1989 and I'm still going strong. Just ensure that you take your medications and ask your GP to refer you for Pulmonary Rehab, On an annual basis, if possible.
Good luck.
in reply to doublecee
What does Pulmonary Rehab invove?
doublecee in reply to
Hi. P.B. is an exercise programme usually tailored to the individual. There are schemes where it is done as a class thing. Either way it is a really good way to start your treatment. Don't let the word exercise put you off. There's nothing in the programme resembling exercise as you would engage in at the gym.
My last set of exercises consisted of 9 different tasks, None taking more than 3 minutes to complete. When you complete an exercise you sit down and asses your recovery rate using a set scale. (Borg Scale). During the programme you can drink water as required. EVerything is done in a relaxed atmosphere.
AS you progress through the 12 period course you might well have the intensity of a task slightly increased. YOU ARE NEVER PUT OF YOUR DEPTH.
I'm not sure if each N.H.S. Trust works exactly the same but when the exercise period is over we retire for a cup of tea/coffee. After which there is a lecture covering various aspects of our illness.
If you have difficulty getting to the site, there may well be transport provided.
It is well worth attending and you may well make new friends from your fellow sufferers.
Anything you want to know, get in touch. Cheers.
in reply to doublecee
Thank you Doublecee, I haven't been recommended for anything like that yet but I do exercise because I mostly enjoy it. Go swimming twice a week for 40 minutes at a time, the humidity seems to suit & help my breathing. I then go to Tai Chi once a week & try to get our for a walk at least once a week. Not a lot of exercise but its a start. Take care
A scarey diagnosis, but you are in good company here. Most of us have a scarey diagnosis, and it is a site full of supportive intelligent people who share their experience and knowledge. Give up smoking if you can - this seems to be the bigges factor in staying well. The, for me exercise has been hugely important. When I am well I try to swim every day, increasing the lengths as much as I can. The lungs seem to really respond well to serious exercise.
Good luck!
Frances 21
A scarey diagnosis, but you are in good company here. Most of us have a scarey diagnosis, and it is a site full of supportive intelligent people who share their experience and knowledge. Give up smoking if you can - this seems to be the bigges factor in staying well. The, for me exercise has been hugely important. When I am well I try to swim every day, increasing the lengths as much as I can. The lungs seem to really respond well to serious exercise.
Good luck!
Frances 21
A scarey diagnosis, but you are in good company here. Most of us have a scarey diagnosis, and it is a site full of supportive intelligent people who share their experience and knowledge. Give up smoking if you can - this seems to be the bigges factor in staying well. The, for me exercise has been hugely important. When I am well I try to swim every day, increasing the lengths as much as I can. The lungs seem to really respond well to serious exercise.
Good luck!
Frances 21
A scarey diagnosis, but you are in good company here. Most of us have a scarey diagnosis, and it is a site full of supportive intelligent people who share their experience and knowledge. Give up smoking if you can - this seems to be the bigges factor in staying well. The, for me exercise has been hugely important. When I am well I try to swim every day, increasing the lengths as much as I can. The lungs seem to really respond well to serious exercise.
Good luck!
Frances 21
johngpastures, I hope you don't smoke. I hope you do some exercise, at home, at the gym, outside.
You could take a hobby like playing the flute or any woodwind instrument as this would train your breathing. This would be great fun if you wanted to join a group, a band ... an orchestra. Lots of people together make each other happy and that is good for the morale.
If you eat sensibly and choose to do any of the above, you can maintain your health, stop the progression to your disease - as others have done here. Live in hope and act upon it. Be cheerful, youv;e got a lot of life in front of you. cheers from an old codger who has go bronchiectasis at 66 years old and still likes to go on, despite the recurring bugs he had.
Graham, thank you for this timely advice on vit A.
I also take Vit D3 (D3 is the one found in our body, so easily absorbable); vit C + zinc (zinc helps the immune system (I have a deficiency of white blood cells, so think a boost cannot be bad)
I go to chemist direct too. I used to take cod liver oil, but some article said there was too much Vit A in that, so I switched to Fish oil (no vit A) but after what you said, I think I'll change back to cod liver oil!
Good health to you and your wife. This is great news.
Mic
I left a link to the ADAPT clinic at the Queen Elizabeth Hosptial , Birmingham England, go to the UK Support Group and find the details for test kit there, I live in UK I have no idea on Europe so would ask your Doctor, they should know! The Retional A that is mentioned here is pure vit A I took this aged 30 for severe acne and it killed it dead, however they needed to check my liver continually during the 3 months on this drug it is very powerful indeed and (does damage and effect the liver) probably why the drug has since stopped being trialed on (humans) for emphysema, although he was no doubt on the right path, we must realise that until all side effects are ruled out nothing is safe and we are not going to ideally replica a animal...so until this is tweaked and I have heard nothing on this subject be careful, the recommended vitamins are A, D, E , and K for lung patients especially those suffering with alpha one ....mostly multi vits can help and if you do decide to do a pure Vit A you need to be checked monthly on your LFT's. Let us hope this can become a reality for emphysema and that they do manage a break through for all our sakes, until then check, double check and ask advise from a Professional. Good luck all, if you have further trouble finding the link let me know but scroll up as its there. 
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