Alpha-1 sufferer

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Hi all i have been looking for someplace i can seek advice and reasurance as i feel alone ,i have my parents support but they dont know how it is or feels.i am 26 and since my mid teens i have had shortness of breath so i went to the doctors and they put it down to asthma and allergies but inhailers didnt help and anti histermines didnt help either. So i let it go and gave up thiniing it was just me being unfit. Fast forward to abput the begining of last year , i was sitting down watching tv when i couldn't catch my breath so we went to the doctors the next day , they took bloods and did two tests one basic and one detailed , they refered me to have a chest x-ray . Chest xray came back with a mucus mass in the lower part of my lungs, and bloods came back as ok and the detailed bloods came back with a "deficancy" and then i was refered to the respatory specalists at hospital and thats when i learned about ALPHA-1 , so they sent me off to do a lung effancy test , and a 3D CT scan . And these confirmed ALPHA-1. Today i thought i would sit down and do some imternet research on it and its almost as scary as it is interesting. I have taken steps on trying to reduce the effects by going to a gym and inhave a NHS referal trained personal trainer , and he is helping me with this. I have been 4 times now and my fitness has greatly improved cardio is up but my lungs still dont want to play ball . But breathing is a tiny bit easier but not completely. I have started to diet and i have an appointment with the medical and treatment team in april to hopefully find out where i go from there. I was wondering if there is anyone else that could kind of give me a head start on what else i can do ,and what else to exspect in the future.kindest regards tony

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12 Replies

  • Posted

    So sorry I know nothing about this lung disease,  is it the one were you get sick easy and infections take a long time to go away.  Also if it's the one I am thinking of Sint you be getting a lot of transfusions?  How will they be treating you, and how did they figure it out?  Maybe someone will come along that has more info, I wish you the best of luck.

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    • Posted

      Hi pam, Yea im more prone to flu and viral infections.yea i think i van have an IV to put the required protiens back into my body, but sadly at this time i dont know what my form of treatment will be i habe to wait till april to find that out , it was first red flagged when they did a detailed blood test where they test my genes/DNA
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    • Posted

      If it's the dessert I am thinking it's about 100,00 a year to treat you,   Did they say if it's because your liver does not make the protein.

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    • Posted

      lol spell check is my worst enemy.  I have been getting tons of infections for months now,  my only advice is to stick around read some posts and wash and sanitize your hands a lot.  Avoid sick people and keep your room clean but no harsh chemicals.  What did the dr give you for advice.
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    • Posted

      Na but when my bloods came back with the ALPHA-1 i decided to do some reaserch and thats what my research has found out
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    • Posted

      So far my doctor hasn't given me any advice or anything, all i am learning is from my research on the internet

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    • Posted

      From what little I know you can live a very long happy life once they start the treatments.  You must of had a very hard time before all this.  I am just happy your dr was smart enough to figure it out.  
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  • Posted

    Hi you are very unlucky to have the Alpha 1 gene as it is quite rare.  At least it has been found now and you can get the right treatment to help you.  You need to make sure you look after your health and lead as healthy lifestyle as possible.  There is no reason why you can't hold your lung function steady for many years or only progress very slowly.

    Please don't google indiscrimantly as you will go from mild to dead in a few clicks.  Stick to recognised sites like this one for your information to ensure it is accurate and up to date. 

    There is another very good site called the British Lung Foundation and while it is based in the UK they have a number of members from around the world.   You would also be very welcome on there.  x

     

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    • Posted

      Hi hypercat, yea from what i have found its quite common with the irish bloodline, although im adopted its thought that my biological dad was from ireland sadly due to the data protection act when i was adopted i wasnt allowed to have access to my family medical records so this was left undiagnosed and unknown

      Yea my mum said "your lucky you have it mildly so you dont need to worry" given how rare it is i did kinda have a giggle at that lol

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  • Posted

    Hi Tony.

    So sorry to hear of your problems.

    This is not realy an area I am familiar with, so I did a search using the page to the RIGHT of this one.

    Just do a search in that area and you will find plenty of help and advise there.

    The box you need is just about the box marked " start a new discussion ".

    Hope this is of hep t you.  

    Regards  Robert

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  • Posted

    To contact the British lung foundation website and helpline Tony, they will list the UK contacts for Alpha 1 by phone and include links on their Alpha 1 information page.

    You can search patient UK top right for the British Lung Foundation which will provide contact details.

    On the BLF website you can put into their search box alpha1 which will allow you to read more and view other UK contact information links from the Blf website.

    Best wishes V

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    • Posted

      In addition as suggested by Robert

      if you search patient UK (search box top right) and put the words:

      alpha 1 antitrypsin deficiency

      You will find several information links come up, the 4th one down is a discussion support forum here on patient UK.

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