Emphysema at 33 updated

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So I posted on here a few weeks ago that I had been diagnosed with Emphysema at just 33 years of age.

My update now is that I've been tested for Alpha-1 and it has shown positive and that I'm a carrier.

I had my lung function tests 3 days ago and am now anxiously awaiting my results. I am very breathless even doing the smallest of tasks so when my results are sent to my consultant, I guess I'll be given some source of medication to help me with my breathing.

I have 2 young children who have to be tested for the Alpha-1 which is another horror I have to face. I'm absolutely dreading those results but I have to stay strong for them.

Any advice now is more than welcome for me such as what's a good diet plan for me and what except use do I need to be doing? I thought about taking up singing lessons as I've heard this is good for the lungs? I doubt I'd be able to go running or anything like that without really struggling.

I'm not in a great place right now to be honest it's all very alien to me but I'm sure I will learn lots more about it as time goes on as I have to live with it

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  • Posted

    The text should read what exercises do I need to be doing sorry for the typo
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  • Posted

    I know you have alot of concerns and questions about Alpha 1.  I had Asthma all my life and when I was tested because of having more breathing attacks and bronchiitis regularly I went to a pulmonologists who was very famililar with Alpha 1 and tested me to make sure. I was definitely diagnosed and genetically coded. I have Alpha 1. I sought a second opinion from another doctor who was more familiar with Alpha and was retested. Confirmed yes.  So in my opinion seek out a pulmonary specalist who knows alot about Alpha 1.  When I was diagnosed I was already in a moderate/severe stage.  The doctor will explain and test you completely. I know your very upset and confused and definitely concerned as I was.  I read everything about the condition and sought out a Alpha group in which we attend always. They are a terrific group and I am very conmfortable with them as they have discussions about different topics, updates, etc.  If you have questions, they will answer and we also have a advocate from Alpha net who is the most terrific person who calls us monthly with any concerns.  You can join Alpha net also.  This site is great for information.  
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  • Posted

    Possibly you have read the health information leaflet on this site (search for Alpha-1 Antitrypsin Deficiency) and when you do you will discover that your children are very unlikely to suffer from this condition, although they may carry the faulty gene. In the unlikely and unlucky case that your husband also carries the faulty gene (about 1 chance in 30), then the above MAY not be true.

    Dont worry about something that may not affect them, consider your own solutions first. It is essential that you do not smoke, and that in the event of lung infections, you get prompt and full treatment, which may include antibiotics and steroids as well as inhaler therapy.

    You will get a lot of support on this site, and I wish you every success in overcoming this challenge.

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  • Posted

    Hi Jodie

    I'm so sorry your going through this.

    I'm 31 and I'm going for further tests this week regarding shortness of breath and spirometer showing narrowing small airways and I'm so nervous as I'm almost certain I have emysemia/copd as Iv struggled with sob for the last year worsening the last few months. I also have a young child and feeling so scared. Sorry I don't have much advice but if you look up health unlocked and join the british lung foundation there are loads of lovely people on there who may have advice and will offer support. Take care and I hope for good results for you.

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  • Posted

    I think I have posted previously jodie, you need to make contact with the BLF or the lung foundation in your own country and also the alpha1 organisation in your own country

    the discussion forum for alpha1 and information at patient UK is from this link:

    http://patient.info/doctor/alpha-1-antitrypsin-deficiency-pro

    The alpha1 organisations in UK also have their own dedicated discussion forum and I daresay other countries do too.

    I repeat myself when I say do ask to be referred to a pulmonary rehabilitation course which will help you understand and manage the breathing difficulties and illness, in understanding and managing the illness can go a long way to helping to keep the condition stable and slow down is progress.  By your own understanding through attending such a course you will be better able to help your children, if you find other siblings are also been diagnosed perhaps you could attend this course together.

    Wishing you all the help you need for you, your siblings and your children should they have inherited the gene.

    Best wishes V

     

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