Hi everyone. So glad to find this wonderful site š 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 šš 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 šš
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Blayney
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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 š Ignoring the Armeggedon predictions. Feeling much better about my life expectancy having read comments on this forum
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.
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 š¤
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 š¤
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.
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 š Works in COPD's favour
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
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. š¤šš¤
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 š¤š¤
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 ā¤ļø.
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 ā¤ļø
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. Pjohnson1965@icloud.com. 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 aāās. 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 š·
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 š½ but they will get used to the new look ha ha
I have Alpha1 and was diagnosed with emphysema back in 2007. Whilst I have only 20% lung function left Iām very much alive and manage to help look after the house and my family.i am 67 but fully intend to live until I am 75 and older. With this decease you have to look on the bright side. Good luck.
Thank you for your encouraging posts and I will also adopt your very positive attitude and defy the doctors and specialists and live my life happily well beyond their expectations. We learn to adapt and to enjoy what we have. Initially I was shocked and frightened but now I am staying totally positive and eating the right foods exercising within my boundaries and enjoying life. All the Alpha 1 people are so brave and it is from them I draw my strength and determination. Everyone is so encouraging
My uncle pass away from this and I'm getting checked for it.. But he made it to 74.. I know I went through the same thing just got a Jack Russel last Dec... I'll find out at the end of the month.... My report said something on my Plumanary Test so I have to get blood work done.. Did yours come out on a report or the Dr deceided to get blood work done..
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COPD by another name could be Alpha-1 antitrypsin deficiency
Alpha 1. 
