Alpha-1- Antitrypsen deficiency

Hi everyone. So glad to find this wonderful site 😊 Was diagnosed with Emphysema on Friday due to this Deficiency. Apparently it is inherited from my parents and has caused my condition. No cigarettes to give up πŸ˜‰πŸ˜‰ but totally freaked out when reading some sites which gave me less than 5 years to live as I am stage two. Hard to believe I would be dead in 2 to 4 when I don't feel that unwell. Of course the Specialist will not give my a life expectancy so I believed those Google sites and had a terrible weekend. I have horses and dogs who need me to stay alive for at least another twenty years ha ha.

Reading your site has given me back my mojo and I am feeling brighter again ... thank you.

Is there anyone out there who has this Alpha 1 thing. In Australia there in not replacement therapy as our medical mafia have not accepted the effectiveness of such treatment. In the USA they have programmes for this. Not sure about the UK. Will try to get on a research programme here which may allow me access to treatment otherwise there is no way for my body to stop the destruction of my lunges and possibly liver. Gloomy outlook so would love to hear from other Alpha 1 people with Emphysema.

Love your site πŸ’—πŸ’—

19 Replies

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  • Hi Blayney and welcome to the forum. We do have other members with the same condition as you and hopefully some of them will see your post. Ignore the 'less than 5 years'. :)

  • Thank you for your reply and welcome πŸ˜„ Ignoring the Armeggedon predictions. Feeling much better about my life expectancy having read comments on this forum

    Thank you again for such a great site πŸ€—

  • Hi Blayney, welcome to the lovely alpha club! I was diagnosed in 2006, and I'm still here. I am pizz, and up to the present time I have been quite active. Recently I had surgery to reduce the volume of my lung, which was a bit tough. I am now back at home, doing as much as I can to regain my strength. It will be quite a long time to get fit again, but I am determined to do it. Don't be despondent, as long as you are on appropriate meds and inhalers, don't smoke or be around smokers, and be as active as you can be, you'll be here for a long time.

    Best wishes

  • Thank you for the encouragement

    I hope your recovery is quick and you feel much better soon. I have read this surgery helps a lot. Sending you lots of best wishes and gentle hugs πŸ€—

    Luckily I don't smoke and in Aussie smoking is frowned upon so very few people smoke. Public smoking is forbidden here so no exposure which is good. I think it is the shock of getting the diagnosis and knowing there is no cure only treatment to make our condition more comfortable.

    I seem to have a great Pulmonary Specialist ( only seen him once but very thorough) and am now feeling much better about everything πŸ€—

  • Hello, a warm welcome from me too - I don't have alpha 1 or copd - those Google sites are something else! I think the worst ones are American. Here in the UK we trust this one and NHS (National Health Service) ones. We have some Aussie members her too.

    How marvellous that smoking is banned in public places over there. How I wish we had the same policy.

    You can type anything in the search bar and lots of information from old posts will come up so you'll pick up more to mull over, knowledge is the key.

    Another thing done over here is that peeps with bronchiectasis take prophylactic antibiotic Azithromycin 3 x weekly during our long dark winters at least.

    Good luck to you. Peege

  • Thank you for replying and giving me the tip about the search bar.

    Our Government has been anti smoking for a long time here so we rarely see people smoking. All beaches, parks, cafes and shops ban smoking and even smoking on the footpaths is considered a no no. A lot of people consider we are a "nanny" place but this is a good thing so second hand smoke is rare. I think we are very blessed with our weather too as our winters are very mild. It is winter now and yesterday I was walking my dogs along the beach wearing shorts and a singlet in the sunshine. Summers are frightfully hot though. Very little cold and wet weather here πŸ˜„ Works in COPD's favour

    Again ta and take care 😘

  • Join the Facebook group alpha people. A very good group for support. By the way I was diagnosed with AATD ten years ago and still life in the old dog yet

  • Hi Mikeadams. Thank you I will join this FB group alpha people. Glad to hear you are still wagging your tail ha ha Cheers 🍻

  • I have alpha gene was diagnosed 6 years ago I am currently waiting for lung transplant never trust what the web says it will give you worst case

    Keep active eat well & do what your docs advise you'll be around for a long while

    There is lots of medication that can help as & when you need it

    It really isn't as bad as the websites make out at least not yet or for a long while to come

  • Hi Georgina and thank you for replying.

    I hope your transplant goes really well. Does the lack of Anti Trypsen cause problems for your new lung/ s or are you on a Alpha replacement programme? Sorry if my terminology is incorrect, I am a new kid on the block. Has the Deficiency caused any liver problems in your case.

    Getting a very bright message to ignore the doom and gloom websites. Felt dreadful when reading about such a short life expectancy and kept thinking that surely the Specialist would have said something if the prognosis was so poor.

    I lead an active lifestyle, will eat well and do obey all medical instructions. As an animal lover and owner ( two horses and three dogs) I have to keep going for them. No early passing for me.

    Must say your UK health and medical system sounds brilliant. You must have the best in the world.

    Fingers and toes crossed for your transplant and cheers and hugs. πŸ€—πŸ˜˜πŸ€—

  • Hi there not on any replacement programs as I'm in London and it's not available here plus there's no evidence it works I take antibiotics daily plus quite a few other tablets I've had valves put in my lungs but unfortunately they didn't help in my case

    My liver hasn't been affected at all and up until this year I have been traveling all over the world so trust me it's not a death sentence as for the transplant I only ask what I need to know right now as everyone is different really hope this helps & feel free to ask anything you like x

  • Sorry to have thought you might have been on a transplant programme. I did wonder if we would be eligible as our Deficiency might attack the new lungs πŸ€”πŸ€”

    Glad to hear you have been travelling and maintaining a great attitude.

    Love your " I only ask what I need to know" and will adopt that myself so I don't over think this too much.

    I am make sure my days are filled with activities I love and having my beloved horses and dogs with me is the greatest gift of all. Surrounded by love ❀️.

    Thank you πŸ€—

  • Sorry I meant I wasn't on the gene replacement program I am going on the transplant list soon as I lost a lot of weight but thankfully I've put it all & more on the help I have received here is fantastic but I do find that only by going on sites like this that I get a lot of my hope & help to truly understand my condition

    Hope you don't mind me asking but how old are you I was diagnosed when I was in my early 30's I'm 40 now & am only now finding that it really impacts my life but I have had quite a few infections over the past few months as was busy enjoying life & probably not taking as much care of myself than I should of

  • Yes this site is very informative and supportive with lots of friendly caring people ❀️

    Being just 40 seems way to young to be going through what you are. I really hope you get a lung replacement soon.

    I am 61 and have always and still do lead an active healthy life. I am dreading the day this condition really starts to impact on my lifestyle as I love the great outdoors and in Western Australia we have such beautiful weather which makes it so easy to exercise.

  • Hi Blan. I. Will. Chat. But easier on my email. I have. A1AD. And it's been 10 yrs. now. Look. My names. Paul. From. London. U.K. 51 yrs. get. Back. And. I will try. To help. See. Ya. Paul.

  • Hi i have the alpha 1. I was diagnosed at 35 still hear at 51 and doing much better than i was then. If its affecting your lungs it probably wont affect your liver. We dont have a replacement therapy eathe hear in the uk. Lots of exercise and a good diet keeping ontop of infections and you will live to a good old age. I am doing pulmanery rehab with a spritly lady of 85 and several in thear late 70s early 80s they are not reddy to go yet. Living proof that empacemia is a death sentance. Just a pain in the aβ˜†β˜†s. Stay well and leave Dr google alone unless its a nhs site or Australian equivalent take care

  • Isent a death sentance lol i realy should proof read better. Oh as you have horses please be carefull around thear hay and bedding too much dust is a bad thing for your lungs and they can carry pollen and mold spores harmeless to moast. But we are not moast 😷

  • Yes I have noticed both the stable bedding and hay are not my friends and have invested in some dust masks. My horses do think I look like an alien πŸ‘½ but they will get used to the new look ha ha

  • Thank you for your lovely advice and I am inspired by all the wonderful people kicking the grim outlook to the curb. Stay well Biggest hugs πŸ€—

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