alpha 1

Hi i am a 32 year old solo dad , started smoking at 14 gave up for several years in my 20s but overall still smoked 15 years or so, got diagnosed with alpha 1 a year ago genotype mz .6gl was the level which is a bit lower than a typical carrier, have had breathing problems since 19, was told it was anxiety so just put up with it half my life , went to doc at 27 told doc think i have empysema as have had breathing problems for years and cant be anxiety he assured me it was anxiety and that only 27 year olds that get copd at that age are ppl with alpha 1 and i wont have it because its rare , fast fwd 5 years later get diagnosed with it after a mouth infection had chest x ray a year ago when ended up in hospital with breathlessness xray was normal had spirometry cpl weeks later which was normal i found all this so odd that i was havin breathing problems have alpha 1 and been a smoker a long time and my lungs are normal that just cant be right, ive spent the last 5 years on and off smoking i was always giving up and starting bk up due to kickboxing and gym etc i didnt wanna smoke but was always back and fourth finally knocked it off again for good 2 months ago ended up with extreme breathing problems couldnt breathe for a cpl weeks like my throat tightened on me , my doctor who is a new doc only just met thinks ive probably got copd there were no tests done just said sounds like what ive got and reffered me to specialist i had chest x ray other day wont know results for another wk or so then after that having another spirometry test i hope this time round i can get some sort of diagnosis not that i want it coz i dont i just feel its inevitable i would got copd due to smoking and alpha 1 , i have done alot of research on it due to doctors here in my city in nz dnt know alot about it i doubt most have even really had a patient with it, so i can only read up about it and ive done that too much , ive come to conclusion im doomed and probably only got years to live no one else had told me that but no one else is telling me anything either , its depressing why save for a house etc if im jus going to die i want to be around for my son as long as i can , i can still run a cpl of kms not to bad so i really dont know how bad ive got it or what and cant compare myself to anyone coz i dont know anyone with it and a similar smoking history, but if it does come back copd, then how were my x rays and spirometry normal only 1 year ago im lost i need help from other sufferers since ive givn up smoking my breathing is way worse i never use to have this problem in the past when i quie smoking i use to feel good and fit anyone out there can give me advce plz thanks

27 Replies

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  • Hi thanks for that

  • Hi wadeq1. Please read the link itsBAme posted .

    A lot of us made the mistake of looking on the web and scaring ourselves ! Some members on here have had it for 20 or 30 years. You will probably see your son grow up and you'll probably die of natural causes. You are quite fit and I have found keeping active the best thing for me. I still work and do most things but I do it slower and plan ahead.

    I have very severe emphysema. It hasn't got any worse since being diagnosed just over 4 years ago.

    Don't let it rule you. You rule it. Please don't let it get you down. Live life to the full as I'm sure you have plenty of years ahead of you to enjoy !

  • Hi i just read all the posts in that link i was sent, there was quite a few i could relate to and yes i think im just gonna have to stay as active as possible i believe i can still work myself up to a reasonable fitness with hard work and healthy eating etc i also suffer alot of fatigue to though was diagnosed with chronic fatigue syndrome about 5 years ago after a virus, but startin to think its probably more related to alpha 1 if anything i will be having spirometry test in 2 weeks so hopefully that will show where i am at

  • Hi there thanks for your reply , im keen on giving anything a try that helps, although in saying that i havnt had a formal diagnosis yet and dnt know how bad it will be classed as i can still exersise just have breathing problems but either way im sure theres goin to be a diagnosis of some sort in next 2 weeks or so maybe mild emphysema

  • Hi im keen to find out now i think from what i knw and have been told the diagnosis of copd or emphysema is going to be inevitable just dnt knw the severity yet

  • Hi i actually read an article in the news a while bk about it possible curing emphysema wow thats awesome i live in nz so will they ship in to nz im really intetested thanks alot

  • yip cant buy from chemists here need a prescription im going to ask my doctor for some, had your wife had any side affects from it, and has her condition improved dramitically or jus a little bit either way sounds good , do you know of anyone else that has taken it and improved i have read there had been quite a few promising trials done on it

  • i will try anything as everything i have been given doesnt work inhalers herbal lung remedies none of it has helped my breathing in the slightest the only thing that helps is prendisone but thats a steroid and cant be taken constantly and the only other thing thats helped me over the years is exersise as i was a fitness freak and qualified personal trainer , i believe i have had some sort of copd for a few years at the least due to my alpha 1 defieceney and smoking history doctors failed to pick up on it , so i will try anything you throw my way

  • Hi wadeq 1, you mention that it was suggested that you breathing problems were due to anxiety.....it is easy to get into a cycle of breathlessness and anxiety. Have you tried the pursed lip breathing technique....breathe gently I through your nose with a relaxed diaphragm...gentle belly breathing...then out through your mouth with pursed lips. Repeat a few times...you can find it on You tube too.

    It is easy to hyperventilate, try to breathe gently with a closed mouth...that warms and filters the air..at other times, even when you are exercising.

    I went on a mindfulness course for people with long term chronic conditions, I found that useful as well as practising meditation at home.

    Take care

  • thank you for your advice im finding this website really helpfull ive had more advice in the days since ive joined here than in over a year from my doctors unbleievable

  • Hi a lot of us have been smokers so please don't feel too bad about it. From what I understand alpha1 deficiency is genetic and not caused by smoking but obviously made worse by it. It is apparently quite rare but often overlooked because of this, If anyone at your young age has a diagnosis of copd, you should automatically be checked for alpha1 but often that doesn't happen.

    At least you have got a proper diagnosis but please don't google indiscriminately as you will scare yourself silly. Only come on recognised sites like this one. I don't know about alpha1 but copd sufferers can still have a long and relatively healthy life if they look after themselves.

    Stay with us here and we will help and support you all we can. I have copd and virtually all I know about it I learned from this site. Take care. xx

  • Thank you for your kind words for the over a year ive bn livin in my own world googling things putting scenerios together tryna estimate my life expectancey because i dnt know anyone else with alpha 1 or copd well not anyone my age with copd the best advice i can get is from ppl on here who live it and am greatfull for every advice i get

  • You are welcome wade. I am trying to remember if anyone on here has alpha1 - I am sure there are a couple and if so hopefully they wil come in soon. There must be a community purely for alpha1 sufferers? x

  • Hi Alpha1, i can't help you with you other problem but i can relate to breathing problems after you quit smoking. I quit nearly 2 months ago and 48 hours after i stopped i had breathing problems, coughing. Struggled to walk 50 yards to my car, a trip to Tesco was a nightmare and had to turn back a couple of times as i would get breathless, start coughing then dry retching. Several times a day it would feel as though someone was gently squeezing my throat cutting my air flow off, which would put me into a panic and start dry retching again.

    Decided to look into my diet, bought a juicer and never looked back. I have a fruit smoothie in the morning, greek yoghurt mid morning, tuna sandwich and a green juice for lunch, mid afternoon instead of a cup of tea (Now 3pm) i will have 2 large carrots and 3 oranges juiced, maybe through some mint in. Dinnertime is usually a salad, sometimes some fish. No salt and nothing fried.

    Within 48 hours of starting this diet i felt great. No breathlessness, no cough and lots more energy.

  • hi there i use to juice alot due to my kickboxing and gym commitments i trie to stay healthy as poss other than smoking i know doesnt make sense , my juicer broke about 2 years ago after reading this and now that my breathing is worse i am going to buy a new one thanks swerv much appreciated

  • Do give the BLF helpline a ring. 0300 003 0555. The nurses are really helpful and knowledgeable and can give you information about Alpha1. there are a few members on here who also have this, so hopefully one will be along soon. Meantime, do keep asking questions. We try to be friendly!

    Best wishes, Monkey

  • Also forgot to mention there are Alpha 1 communities you may like to get in touch with - alpha1.org.uk/index.php/wha... .

  • thank you very much i went on that website and read the entire thing it was really interesting as it had a slightly bit more info than alot of other alpha 1 sites , from what i have read i believe the uk is probably ahead of usa in terms of alpha 1 info help etc all the help and info seems to be coming out of the uk in saying that the alpha 1 defective genes are believed to come from europe ireland etc from the viking

  • Hi Wadeq1, I have alph1and I'm a mz,( from Ireland ) because I smoked I developed emphysema. I'm very glad I stopped 11 years ago because I don't think I'd still be around lol!

    If you're on Facebook check out the New Zealand site , they are a great bunch and I learnt a lot from them. There's also other alpha groups there and they post lots of info.

    Try to stay positive and look after yourself, huff xxxx

  • Hi may i ask how old u are and how many years did u smoke also do u knw ur alpha 1 blood level from wat ive read alpha 1 originates from or around ireland and has the most ppl with alpha 1 on earth

  • Yes I was 60 this month 😃 I packed in smoking when I was 49 after about 30 years of puffing away. I'm not sure what blood level I am and only found out I had genetic emphysema a couple of years ago when I was tested for it though I was dx 11 years ago with severe emph aged 49.

    At the time they said my lung age was 118 but now they are 108 ! I've been on ambulatory oxygen for two years, I'm still fairly active.

    Glad you're finding the site helpful, it's good to find out as much as you can😃🍻 huff x

  • Hi You are doing ok for now I know a guy here in OZ that has been on o2 24/7 for over 12 years and of course had emphysema(COPD) for many years before that his is Alpha1 as well. He is still doing well he lives on his own so see your specialist and get on preventative meds and keep healthy and walk as much as you can. I would still be saving for that house deposit you have a son to think off and I am sure you will be around when he is old enough to take it over. Little choc eclair

  • Hi Wade just thought I would add in I am 58 and have severe Emphysema I think I am probably Alpha 1 also as I can remember getting breathless way back in my twenties. There is nothing more frightening then being breathless but really you need to calm your self down and give the pursed lip breathing ago that was mentioned to you a few messages back. I do it and its great. I too thought my life was over when I was diagnosed but I got onto a lung support group here in Australia and that changed my life similar to what your finding out here. Drs and pulmonary nurses are great for the medical side of things but how to live day to day is a different story. You need to talk to others who actually live it. As you said you have learnt more just by being on here. Ask any questions you feel like nothing is too small or silly. When I saw my lung specialist for the first time he did blood tests and ordered a CT scan Xrays Full lung function tests Echo Cardiogram of the heart to see how much if any damage has been done to my heart by lack of o2. That's the sort of specialist you want and if you don't feel comfortable with yours ask to see a different one. Its your life literally. I added this message onto the first one I wrote as I wanted to let you know your not alone and also your young so have a lot more chance of slowing down the progression of it by keeping fit and looking after yourself ok Good Luck mate.

  • Hi sounds like its not a desath sentence unless you carry on smoking ive learnt more on here in the week that i have joined than all the googling i have done over the year, do you think there will be a cure in the next ten years or so , how long did you smoke for? and how long have you had empysema? thanks for reply

  • Hi Wadeq1 I don't think there will be a cure in the next 10 years for the simple reason that all the testing and permission and trials etc take so so long before we get to try them. Still you never know I mean we all need to stay positive and who knows this Vitamin d and K or A or what they are may work and something may come of it through the medical channels. All I know is nothing happens quickly in the field of medicine when we are talking about organs repairing themselves etc. At the moment there is only a Lung Transplant or Lung Reduction but that one only lasts about 5 years and then your back to were you started.

    I smoked from the time I was 14 though I did pinch a smoke once or twice before when I was 10 and 12. I gave up 2007 so that's about 36 years I smoked and it was approx. 30 a day. I was diagnosed by a GP in 2000 but had all my tests etc and went onto medication full on and stayed under a lung specialist from 2006 onwards. Any other questions just go ahead and ask ok. I am sure everyone is happy to help.

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