Emphysema, I need to ask a few questions as my mum has just been diagnosed

Hi, as said my mum who is 46 has just been diagnosed with emphysema. She was told yesterday that she is ZZ (something to do with genes) which apparently is the worst case. They have also said she might have to have a lung transplant. Im just after a few stories as an insight so I can understand a little more

Thanks Gemma

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  • Thanks Kant, He specialist has sent a letter off to her GP and he will give us copies for us to go get tested as they have said she is a carrier. I know that the said her lungs are like that of an 80 year old and that scares the hell out of me. Also the talk of a transplant.

  • Hi gemmalou

    So sorry to hear the news about your Mum, I don't know about the zz thing, but if its genetic it may well be Alpha-1 Antitrysin Deficiency, this is something your Mum will need to clarify with her consultant. Alpha-1 AD is the hereditary form of emphysema.

    Generally Emphysema can be slow to progress if certain precautions are taken and the best course, to learn how to manage symptoms and wherever possible avoiding further lung damage, is called pulmonary rehabilitation, GP or Consultant referral. I would highly recommend this course.

    For infomation about Alpha1 see links below,

    (be sure to ascertain with your Mum's Consultant, IF the zz to do with genes is A1AD):

    BLF's page: blf.org.uk/Conditions/Detai...

    Alpha-1 Website: alpha1.org.uk/

    BLF's page, Living with a Lung Condition: blf.org.uk/Page/Living-with...

    BLF helpline on Monday- Friday 03000 030 555 between 10am and 6pm.

    Hope some of this helps.

    All good wishes

    Zoee

  • My case not to bad as some of yours.

    Prescriptions are to use spiriva in the morning,

    symbalta once or twice later. Carry a

    Ventolin inhaler outdoors, using it as URGENT.

  • Julierad, your post eases my mind. I just found out I have emphysema, and have been told to use Spiriva once daily and to carry my Ventolin inhaler and use if/as needed. Other than that, the Pulmonologist said he'd see me back in 6 months. I guess I'm on the right track, unless symptoms progress.

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