hi all more help required please!

After a couple of weeks of trying to get my head round the latest diagnosis of bullous emphesyma, i have had a call from my GP who wants me to take a blood test to see if i have the a1at deficiency and that it may be genetic. He is also referring me to a lung specialist because he said its very unusual to have this at my age (49)! I just dont know what to think or should i say i do know what to think and it terrifies me.

thanks Tasha

13 Replies

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  • Hello Tasha

    We all understand how you feel it is so frightening when you first find out, I was only diagnosed this year. I would ring the help line on here they are brilliant. And if you just need to let off steam someone on here is always on hand.

    Kim xxx

  • Hi Tasha, the trouble with young age is that you think that nothing bad should be happen

    and when were told different its a hell of a shock, but after talking to others or even sounding it out on sites like these you will find a lot of comfort and understanding, I have and I was 47 when I was told about my copd.

    Take care i beleive you still have a long life a head.

  • thankyou both, at the moment i just want to cry! knew i had emphesyma 18 months ago but the bullous thing more recent. I feel fine at the moment breathing wise but after seeing my brothers health deteriorate i know what a horrible illness this can be. i did give up smoking after 1st diagnosis and thought this would make a huge difference, but it doesnt seem to be the case just wish i knew if it is still going to get really bad even though i no longer smoke? I know we can never really be sure just need moral support.

    thankyou Tasha

  • Emphysema shouldn't get worse if you give up smoking. Your lungs, like the rest of your body, will just deteriorate naturally with age.

  • Hi Tasha

    It is understandable to feel the way you do, so allow yourself to!

    A1AD is a rare genetic disorder and this will often be looked at if there is a COPD diagnosis in 'young people'. It is quite natural to feel apprehensive about this.

    Please feel free to call us on 03000 030 555.

    Best Wishes

    Jo

  • It is about 20 years since I was diagnosed with Bulous disease. I have multiple lung conditions although not emphysema, and I am still here at 65. so please don't despair! xx

  • Thanks everyone, had a damn good cry today and now ready to face it head on! spoke to one of the BLF team who gave me some helpful advice. We will see what tomorrows blood test and pending hospital appointment show up. I have no one at home i can talk to so hope no one minds me having the odd wobble on here?

    Tasha

  • Come on here as much as you want!

    Lynne xx

  • Hello, that's what I have and was also youngish when it was found. I was so frightened at first, expecting to burst the bullie things when ever I got a coughing fit. I still get frightened but not as much. I see the consultant every 3 months and he keeps a careful eye on me. Good luck with it x

  • thanks linsabout, any info about the progression/treatment/long term effects would be very much appreciated. at the moment i am feeling fine and desperately want to stay that way!

    tasha

  • Hopefully you will feel that way for many years to come. Just be guided by your doctors. I don't think we are worse off than anyone with other forms of emphysema. I have always thought keeping active helps-you know use it or lose it. Wait and see what the specialist says and try not to worry unless he tells you too! I'm only daily anticbiotics as my immune systems low. I have mucodine and 3 inhalers. Please don't read all the stuff on line about it. Take care & keep away from germs! Have you had the pneumonia and flu jabs?.

  • thanks linsabout, had my flu jab but the doc didnt mention pneumonia jab must check that one out. Not on any meds yet but will see what specialist says not had appointment through yet, had A1AT blood test yesterday so waiting for the results of that. Thankyou for being so positive do you mind if i ask how long ago you were diagnosed?

    Tasha

  • The doctor says I've had it about 20 years.scars on scan that show some of the bull things have burst without too much discomfort, at least I and docs at time thought it was pneumonia and or pleracy pain. In my late 50s now. It is a frightening thought that these things are there tho isn't it? Especially when you have a cough. I didn't have meds for a long time, I didn't need them and then it was just the ventolin. I have looked after several grandchildren till school age over the past 20 years and just couldn't quite manage the youngest this year. So you see its so slow you hardly notice the changes. But keep active please even when you don't want to. I promised my 6 year old granddaugher I will be at her wedding and I will. Take care

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