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28 year old w/ emphysema

Crazypants profile image
22 Replies

I got diagnosed with emphysema at 28. I have asthma and allergies. I've had issues breathing and used Albuterol but didn't have a clue what was feeling like a vice grips on my chest.

Anyone have experienced with emphysema COPD under 30? My life expectancy can't be good getting it this young and not being a heavy smoker anymore?

I started smoking cigarettes young then stopped and would only smoke on occasion.

Clearly smoking is off the table... But how long could I possibly last already having ER visits every year about my breathing before I knew.

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22 Replies
Tricity125 profile image
Tricity125

Hi. Crazypants. I got it at 42. You sound like it's genetic I have something called A1AD. May be you could ask Drs to do. Tests then will. At least you would know why you have Empysema. But. There's. Not a lot. To treat with. This illness. Use to be a old person. Desease but. Iam hearing of more. Young people. Why. ??? I wonder. Who told you. A GP or. General hospital ?? I would. Try to go. To. Royal Brompton SW London its. A heart lung hos. Get a 2nd. Opinion. Well. You. Look after yourself. Take care. Paul.

hypercat54 profile image
hypercat54

Hi as you are so young you need to be tested for the genetic link ie the Alpha1 Deficiency Test. It is only a simple blood test so make sure your doctor does it. Do you have any close relations with copd or have you had?

No one can tell you how long you have as this is very individualistic and copd is a progressive disease. However by leading a healthy lifestyle and looking after your lungs you have every chance of holding it stable for many years. Do you know your FEV1 (your lung function)?

It is much more important how you feel rather than your numbers but I would say you have many healthy years ahead of you yet. x

tracyball1 profile image
tracyball1

Crazypants try not to worry about your life expectancy there is no reason why you won't reach old age but you need to keep as active as possible like I walk four times a day even if my chest feels crap, eat healthy and stay away from people with colds and things that trigger your chest making it worse x

sassy59 profile image
sassy59

You’ve had some great replies so I hope that helps. I just want to wish you well. Xx

Agnes54 profile image
Agnes54

Ask to get tested for pulmonary hypertension and get echo x

Caspiana profile image
Caspiana

Hello Crazypants . 👋

I don't have emphysema, so I can't really make any comment about your condition. I would say, it's best not to assume the worst, or your days will be filled with foreboding. 😑☔⚡

You are very young still 😊. I'm not qualified to make any assessment , but have the doctors talked about a lung transplant in future? I am just wondering.

It would be good to know more about your condition. Have you had a lung function test or a six minute walk test? Are you on oxygen?

Sorry for the slew of questions.

Sending warm wishes.

Cas xx 🌹

in reply to Caspiana

hi cas hope your humidy levels have dropped

Caspiana profile image
Caspiana in reply to

It's not too bad thank you Helen. xx 😊

in reply to Caspiana

Hope u r ok cas-in a rush today.need 2 catch up on household jobs,dog stood on me laptop ruined all my preferences on here .my idiot son seems 2 assume its his.hes got his own big posh one upstairs,i can word prcoscess but that isit and no spell checker 4 me don't like pred text.

thinks hes going on holiday abroad giving me attitude -I'm giving it back.

I thought who told u in ur job u nneed 22 b protected.carole needs 2 c this I'm teaching him a lesson he will never forget

hes on his own at work now and he will end up losing his job-now back under county council work and also 02 trees

in reply to Caspiana

where is sassy and pete cas are they ok I ve sent them a message.

in reply to Caspiana

u sound like ur still not well are you sure u are ok?

Pinejen profile image
Pinejen

Hi, Get yourself thoroughly checked by the medical establishment...then check the facbook COPD support groups.. on some of them there is mention of folk getting good help from CBD oils.. they are legal.. its just the sellers cannot state what they are good for...

I take one drop of CBD a day and it really helps....

in reply to Pinejen

b careful on facebook don't put any personal info

Carnival567 profile image
Carnival567

I know exactly the shock you feel when you get news like this. I can still remember the March day in 1961 when I was told I needed urgent surgery for congenital heart disease. I was 17. The risk of death was 20%, but I didn't know that. In those days it was assumed that surgery was a solution, but it was not so. My advice to you would be to follow your doctor's advice, take your medicine as advised, take exercise and NEVER SMOKE AGAIN. I have seen the insides of more hospitals than I care to remember, but there are worse things. Finally, with all the research going on you are young enough to benefit from it, you may be skipping about like a spring lamb in ten years time! Good luck xx

VoodooChile profile image
VoodooChile

Hi Crazypants.

I agree with the others if you behave yourself you can have a long life. I have a friend who was diagnosed with severe Emphysema when she was 21 she is now 75.

Regards

Andy

angie105 profile image
angie105

I have had emphysema since I was 29.I take spiriva respimat 2.5,symbicort,ventolin and albuterol sulfate in my nebulizer.It all depends on how well u can handle it.I am 48 now.It can be hard to deal with but as long as u do your treatments and have a good Dr u can live with it for a long time the best thing to do is quit smoking it will help slow it downnd help ur breathing considerably.I am waiting to get the alpha 1 test,my mother has it,my father did and so did my grandfather.Just stay strong and deal with it the best way you can.

MidnightCallers profile image
MidnightCallers

I have Emphysema (COPD). I was advised to change my diet. Emphysema means ageing of lungs. This can be caused by what you eat, pollution or inhaled substances like smoking.

I was lucky as I have never smoked. So I changed my diet completely.

Most likely mine was caused by pollution living in Bexley London area.

The worst thing to have with lung problems is cows milk. I now take Almond or hemp milk.

Thankfully I have always been active playing badminton and other sports. I would recommend to keep active.

I would advise to take extra vitamin A and D. You can also take NACS. Just go to your local Holland and Barrett store for advice.

When I was diagnosed in my early 40’s I thought it was a live sentence.

But I have to admit since changing my diet, I am more fitter and when I was got diagnosed my lung age was put as 79. It then went down to 69 and now it is 64 years.

Keep believing, you might have years ahead of you.

hopetorun profile image
hopetorun

I was diagnosed with empasemia after having asthma from the age of 2. This was in my mid 20s. It was not until my 50s befor they decided to do a ct scan at which point they found very little. It was still asthma with some remodling of my airway. So unless they have carried out the correct test they cannot tell. I think the key thing is to ask questions and ask for further tests to confirm the diagnosis. Good luck.

Robin77 profile image
Robin77

Agree with post above, important to get a correct and confirmed diagnosis from specialists. Sometimes interpretations are not accurate. Nobody's fault particularly, it's just that it isn't always simple. X rays, for example, are not precise enough. Recently I received an emphysema diagnosis based on X rays which was disproved shortly afterwards. Good you found this forum -it's a great source of information and encouragement. I've learned a lot here. Take care. Try not to worry.

Final thought: is your asthma being looked after properly? Mine wasn't properly treated initially and when I got the right diagnosis and treatment, I was miles better for years.

Jadex1986 profile image
Jadex1986 in reply to Robin77

Hiya robin my doctor said mild emphysema from an xray last week "both lungs appear emphysematous there is no sign of collapse, consolidation or any plural effusion. Both him a are within normal limits " is this enough for a a diagnoises?

flo1 profile image
flo1

You need a blood test for alpha one antitrypsin deficiency as suggested above.

brityotis profile image
brityotis

Hello, I was just diagnosed a few days ago at age 28. I have four young kids under age 8... I am pretty scared and still in shock. I too am thinking about what my future will look like now because I had so many plans and now it seems that all that has changed. I do not know exactly what stage I am at yet, still waiting on seeing another specialist. My symptoms are felt on a daily basis and I cannot ignore them at all. I hope to make life changes and start working out and eating better in hopes to make me healthier and slow the progression. How are you doing with your emphysema now? Thank you for sharing!

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