rare lung disease

[geordiegc26]

any person got Alpha.one antytripson lung disease

[cofdrop-UK]

A very warm welcome to you. It's a no for me hun but I hope someone comes along soon. cx

[jenss]

Welcome and sorry can't help either, but there are a few members on here with it/ or experience with it and will be along shortly to help. Best wishesxxx

[Hidden]

Hi

I do not have that but i know there are some members on the site who do so please just stick around and im sure they will get in touch.

Mandy x

[hufferpuffer]

Hello Geordieg, welcome to you and yes I have Alpha1 AD. Have you just been informed? Happy to answer any questions if I can, huff x

[Hidden in reply to hufferpuffer]

I didn't know you had that huff. It's quite rare isn't it? I must admit I know very little about it so will be interested in learning more. x

[hufferpuffer in reply to Hidden]

Yes, I only got tested for it two years ago though I was diagnosed eleven years ago with severe emphysema...luckily I met an amazing Chinese Consultant and after she noticed my badly clubbed fingers she had me tested...now I have been on ambulatory oxygen for two years I can still get out and about...fancy a drinkypoos down the local, I'm buying ( hope I win the Grand National! lololol ) huff xxx

[peege]

Wishing you a warm welcome to the site.

It's a bit quiet on the health front at the weekend but there are several people here with Alpha. There are different types and explains why young, non smokers get COPD, that's all I know I'm afraid.

All the best, Peege

[Catnip]

Yes, I'm an alpha-1, Geordie. I sas told as a "throw away" comment by the Registrar a lot of years ago, when not much was known about it. I'm on ambulatory oxygen at 4 litres/min and looking at L-TOT soon, I think. Still, that's the way emphysema goes...

There seems to be nothing that is done about the alpha-1deficiency. We just have to be sensible about not smoking, keeping fit and getting on with life.

Cheers

Catnip

[mikeadams51]

Afraid so. Diagnosed in 2007. The white cells just keep eating the lungs away unless you can stop it with antibiotics. Less than 30% lung capacity now and seems to go down every year even without the normal signs of a chest infection. Since there is no imminent cure I always look on the bright and only moan to my self about my self. My philosophy is if I wake up that's good.

I hope that helps geordie

[Offcut in reply to mikeadams51]

Great PMA. The only way forward.

[Offcut]

I do not have it but it does seem that more are being tested for it now.

[rogerbaldy]

I am AAT, PiZZ with emphysema and 23% lung function. Diagnosed 11 years ago.

[Bryju124]

My grandson and eldest son have alpha 1, they are being very good with my grandson, regular breathing checks, liver function etc etc keeping an eye on him so they can react dtraight away should he start with any problems. Emph son diagnosed with moderate copd and is on inhalers at present, he just can't seem to give up the cigs though which isn't helping him. My tests came back negative hubby won't go says what you dont know .... I could throttle him as I have emphesema and need him around for a long time lol keep breathing

[geordiegc26 in reply to Bryju124]

please tell your son to stop smoking i stoped now if i go near some cig smoke i will be in hospital for 2 weeks stopping smoking is a very must do