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

1 Reply

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  • Hi, I have just come across your post and seen that you didn't get a reply - sorry about that. Please do give our Helpline a call if you haven't already on 03000 030 555 as we have respiratory nurse who will be able to help. There is also a Facebook group for Alpha 1's which might be helpful. facebook.com/groups/alpha1a...

    Take care,

    Melanie at the BLF

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