Hi I'm new here I'm 37 and been diagnosed with moderate emphysema , copd , asthma I've had loads of test which found the defiency alpha1 antitrypsin my fev1 42%

I'm so breathless all the time it worrys me that it progressing really quick

Does anyone know if the defency makes it progress quicker? Sorry about spelling I've just taken my daughter to school the walk use to take me 7 mins it now takes me 20 mins ?? I tried upping my pace abit this morning took me 15 mins but got home so breathless it made me really sick and still recovering now 20 mins later ??. Is this normal ?

10 Replies

  • HI Nik.

    Sorry to learn of your condition & the struggles you are facing.I,m sure other members wll come to your aid.All i can say is that i go swimming 4-5 mornings per week & i feel better for it.I have to stop & collect myself after each lengh.I get sob very quickly,i just hope i,m exercising my lungs enough to keep the grim reaper at bay.Good luck & best wishes. :)

  • Thanks pedantic x

  • Hi,

    check this link by clicking on it for info:- bbc.co.uk/health/physic...

    best wishes

  • Thanks have read this its very help full

  • The link won't open for me!

  • Alpha 1deficiency depends on the type you have. Mine is never likely to effect me so i have forgotten about it. It is a bit of a specialist area so i recommend you call the blf helpline and talk to a nurse.

    On the other hand accept that despite being sob, that is short of breath,nyou need to keep as active as you can. This will keep you cope better.


  • I have type z both defective genes

  • Hi Nik. I can't help with alpha1, although I am sure others will.

    I just wanted to say hello and welcome to this site. It will help you to learn more about your condition as well as like minded people who all share this horrid illness.

    Please ring the BLF helpline as suggested, they are really good.

    Lynne xx

  • Hi Nik,

    Just to reiterate what Lnne said, please do call the BLF Helpling for some advice: 03000 030 555 Monday - Friday 10am-4pm

    You should also ask your GP for a referral to Pulmonary Rehabilitation or at least Exercise on Referral.

    Best wishes, BLF Active

  • I have been living with alpha i for about 7 years now, i have bronchiectasis. I walk or exercise on the elliptical 4 days a week for 30 minutes a day. it does help and when I have bad days I just tell myself to keep going.

You may also like...