Hello
I have been diagnosed with emphysema and maybe asthma also, I’m 32 years old and currently struggling with the concept, they think I have alpha 1 antitrypsin deficiency but I haven’t had the test results back from this yet.
Is there anyone else with emphysema at a young age?
I’ve smoked for 20 years but quit for last 3 & half months.
Any advice I would be grateful
Thank you
Hi
Welcome to the forum! Not a good start.
Alpha 1 deficiency is a door opener, the smoking jumping in with both feet, can result in a diagnosis of emphysema. The test results will give a definitive answer as to your diagnosis. Which I would hazard a guess to be in the Mild stage. As you have already done the most important thing by stopping smoking. This will drastically reduce the progression. Exercise and a healthy diet and avoiding any second hand smoke, or any toxic fumes. And you will be able lead a fairly normal life. May be times when you have to slow down but you will know this by your fitness levels.
Wait for the test results and any other test that may be undertaken.and then you can have a revaluation. Keep in touch on the forum.
Thanks; stone-uk,
I’m trying to stay positive and take each day at a time; not smoking!
I had a scan which showed the emphysema and a spirometry which showed reduced gas transfers. Also a family history of lung problems; Hence there pretty certain the alpha 1 deficiency. But either which way; They say that I can maybe reduce the time it takes for my lungs getting worse; I’m just scared this may not be the case. But next step is exercising! Or trying too!
Thank you
Hi Nell, Stone has given you some good advive there. You may also want to get in touch with the UK based Alpha 1 support groups. They bothe have Facebook pages and websites. Obe group is having a meetup of Alphas in Coventry end Sept where you can meet patients and Alpha specialists. Fyi I am also an Alpha zz which ìs severe. Im pushing 60 and I am well at the moment. Good luck and remember - not smoking is your biggest ally. Z
Hi there, hope ur as good as you can be. I was diagnosed with COPD/Emphysema at about the same age as you....was told my Lungs age was 96 and also unfortunately the Dr that gave me the news also followed it up with “so that’s a life expectancy of about 5 years for you”. THIS IS NOT TRUE AND NEVER WAS, however if you google the condition it is on some pages the info that still comes up(🙄🙄). Naturally I was beyond deverstated. I had literally JUST moved to a brand new city at the other end of the country from most my friends and family to start a new job in a new career field......I had only gone to my GP’s as i was struggling with panic attack’s which was an established health issue and i left with what i thought was a five year and out Death sentance. Yeah so to say I didn’t deal with it too well would be something of an understatement and I made the “decision” that if I only had five years well they were gonna be five damn good years, on my terms and that was that. I didn’t engage with Drs properly, I didn’t stop smoking and added a few new bad habits into the mix for funsies. Then I got to five years in and I wasn’t Dead and I thought hmmmmmm there might be something a bit off here!. I was still able to walk miles a day, wasn’t on any medication so i pulled me head out me a** and started to actually learn about what I had been told was wrong with me. I didn’t have the Alpha one form, basically it seems like it broke down a bit like this. I was born very premature and my lungs weren’t developed fully, both my parents(and well everyone around me growing up)was very heavy smokers and I had constant chest infections as a child including pneumonia at 12 which left scaring on one of my lungs....i also started smoking myself at 12/13 with my mum buying the cigarettes for me(as you do!). Drs now say that the combo of those things was just something my lungs couldn’t cope with caused so much damage and hense this condition at such a young age. But I’d reacted off the 1st information i was given so I’d pro actively lived in a way that then further damaged my lungs ALOT and oh boy do I regret it now!. I’m now 42 and my lung health ain’t good BUT THAT COULD HAVE TO A LARGE POINT BEEN PREVENTED IF I HADNT BEEN SO SELF DESTRUCTIVE. Now I don’t smoke, eat healthy, take my medication but I can’t ever completely take back the damage I did to myself. The numbers of people being told they have this horrible disease at a younger age is increasing partly due to health care and partly due to the fact we’re paying the price for the lifestyles of those that bought us up(unless of course ur alpha one). Unfortunately in my experience a lot of people to do with Lung care haven’t caught up to that yet and are so used to dealing exclusively with people significantly older that 1. You feel like an display oddity in a zoo 2. No offence but having to get treatment in exactly the same way, at the same time etc as someone who has 60-70 years on you but mite actually have better lung health than you is soul destroying and really doesn’t work!. I just had to chance over rom DLA to PIP and my primary lung care nurse kept talking to me about Attendance Allowance and how surely I would get that?. No, no not a chance cos I ain’t over 60 and however many years you have to be to quality for it! It goes purely on age and surely she should know that eh?. But as our numbers increase so does the way the people that are responsible for our care attitude, knowledge and manner have do as well and that can only be a good thing for them, me, you and every single younger person who now gets told they have this horrible disease. So my advice to you is hell yeah ur gonna be upset and you have every right to me! It’s not like uve just won euro millions but don’t let that be ur downfall. Get a good GP, ur here and the amount of info that everyone has of all different ages is priceless, fact check EVERYTHING, we live in an online world and there’s so many groups on Facebook etc which are also great, if u smoke STOP! If I’ve stopped stay stopped....And I know we’ve grown up hearing “oh uve broken ur toe well that’s cos u smoke”. Noooooo i kicked a door and broke me toe thanks all the same!. We have been so desensitised to the actual damage smoking does that we don’t even hear it no more but this is one case where it will prob be the biggest deciding factor on which way the rest of ur life plays out. Stop&stop ur exposure to 2nd&3rd hand smoking too. The only stupid question is the ones we don’t ask and i regret like you wouldn’t believe that i was stupid enough not to ask anything for so long. Truth is I should have known better cos my work background was all in health care at that point but hey denial and self destructiveness are strong things!. There are so many people who live quite happily with this disease for multiple generations of their life and they ain’t sitting around miserable. That’s what I wish I had been looking at. I wish I’d known yeah the game may have changed but it’s far from over. I hope this helps you in SOME way. Sorry this is so long but I just can’t do short, snappy replies. Take care now. Deni xx
Hello Deni
Thanks for the reply; hope ur well too 😊
yeah the nurse I saw cautioned me that if I didn’t stop smoking it would turn into severe emphysema with 5 years. But I declined the stop smoking offered at the time. Think I was too shocked. I literally just giggled though the entire explanation she gave! (It was nerves) And then reality hit about a week later; thought I better try and stop smoking.
And yes like u parents smoked heavy; even around us; smoked myself by age of 11; but everyone did it?
My dad died of lung cancer age 43 by then I couldn’t quit; I tried a few times; but was addicted; Anyone’s always said to me u keep that up you’ll get cancer; nobody ever said what happens if u don’t. Like what is like living with a lung disease; and knowing pretty much is of your own doing!
I was also a premature baby at 1.3oz and a twin; but I never thought this could have an effect on it!
So yeah I now waiting for a follow up appointment from this nurse; who must think I right don’t care! She just kept saying u got to take it seriously! That probably why my follow up was meant to be beginning of July 😂! An I haven’t had one yet!
Thanks
It’s totally overwhelming eh? Worse still I find that sooooo many people that are younger have never heard of COPD(and apparently can’t handle google in this one case 🤦♀️🤦♀️) so you get a lot of blank stares when u try to explain what’s going on with ur health etc and therefore they ain’t-in my case anyway been the best support system you could have hoped for and can become very isolating. Lung care/COPD has also been horrendously under funded for years but luckily has just been given new status and a cash injection into the NHS so in grand scheme of things now ain’t the worse time to be getting a diagnosis and having just read Ikeiths reply as well below as so well pointed out there are a lot of treatment options now available/becoming more available. Do you use Social Media a lot? If you wanna link up on FB/Twitter/IG let me know. Deni xx
Thanks deni, yeah definitely overwhelming, and yeah people look at gone out; even doctors were I am! Look like hmm really? At 32? no mate said it for laugh like! I’m on fb 😊
If you feel like adding me real name is Deni or Denielle Nicol living in London and profile pic is a selection of me kitties and Doggo is an Xmas hat 😂😂😂😂😂😂😂 Dxx
*Hope I’m allowed to post these deets here all, if not and it get removed i more than understand but I’m trying to learn how to work and struggling with the private message function on this site. Sorry!. Dxx*
xNellx
Hi, welcome.
Unfortunately not young anymore but have asthma from an early age, now have severe emphysema.
There is a lot of hope for someone of your age but you may have to search around a bit for it. You have the choice of a lung transplant, lung reduction, lung valves, lung coils and even stem cell treatments. You could also try "trials" once your results are available. You will need to be referred at least by your GP or a specialist.
Search the web for info there is a lot out there and contacts you can make, you need not despair at your age.
IKeith
Hello xNellx I was diagnosed at the age of 40 with copd I’m now 51 with severe copd .. getting your head round everything is the hardest thing to do .. the best advice I can tell you is listen to your body .. if your body says slow down then do it! Excercise by all means just take it easy .. ask loads of questions on here or with your consultant .. you will get there huge hugs xx
Greetings
I think that everyone has covered pretty well everything. I was diagnosed with emphysema when I was 34 -- a long time ago. I was also told, as a sort of "P.S." that I was an Alpha-1, but 40 years ago, that meant nothing.
You have done the very first right thing, by stopping smoking. Eat well, exercise, enjoy life. You have donkeys' years ahead of you, and time to plan!!
Cheers
Catnip
Thanks Catnip, seems that way 😊
You'll get good advise Stone-Uk gave you some good advice...
I was diagnosed with emphysema at 27 but I did smoke at a young age, my lung collapsed three times I think this brought it to their attention along with lung bullea, I was told I would die by the age of 40 if I didant quit so for the sake of three girls at the time ( I now have four girls) I quit and here I am 😜
Good for you for quitting Nik72!
Yes.I was diagnosed at 29,and I don't have anti trysin.They say mine came from second hand smoke,woodsmoke and of course me smoking.
In 1999.I am 48 now.It did not start getting really bad until 3 years ago,but I am trying to keep exercising.I almost gave up,but my mom has been helping me cope with it.She also has it.I get very frustrated because I can't do everything I used to.I have just been trying to stay strong and cope with it.I am also on oxygen
Emphysema
Emphysema
Emphysema 
Emphysema
Diagnosed with emphysema at 38
