Received results ofor CT scan this week. Not sure if I should be concerned or not.

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My recent CT scan reads, "Both lungs are diffusely emphysematous. There is apical lung fibrosis. There is small volume mediastinal lymphadenopathy." Dr described Emphysema as "significant". I am a 54 year old female and diagnosed with emphysema at 38 years. Should I be worried?

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  • Posted

    So you then asked doc what he meant by "significant?" In terms of daily life? Because he's the one who said it, he's the only one who can explain further. I would think that you already know what he means, especially in terms of how your breathing & life have changed since your early 30s.

    As to the terminology on the report, you could've asked him. But that's okay: you can look all that up online.

    Do you by any chance smoke?

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    • Posted

      Thank you for ypur reply.

      When asked what he meant, he continued to say significant. I asked how it was in comparison to another woman of my age and he replied that I should not have Emphysema at my age.

      I saw my GP and asked him how serious things were and he asked why I needed to know as my treatment would be the same.

      I did smoke in my early years but gave up 12 years ago, after a prolonged stay in hospital. The specialist has now tested me for an hereditary cause for the emphsema.

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    • Posted

      Pretty awful replies from those docs! Good to know that you quit smoking a while back.

      I hope that all the testing leads to you getting some more communicative docs. It is okay to say to any doc/nurse that the lungs in question are yours and you want to know everything doc's find out, goid or bad -- IF you're certain that you want to know.

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  • Posted

    Hi Eco  if you are in the UK I would suggest getting in touch with the British Lung Foundation Helpline.  

    Just search patient UK for  'British Lung Foundation' and the web address and contact page will come up.  You can search the BLF pages regarding certain conditions relating to your CT scan.

     

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    • Posted

      Thank you for your reply. I will contact the BLF tomorrow.

      I guess a little more research is needed.

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  • Posted

    You have said that 38 they diagnosed you with emphysema, did they test you for Alpha One Antitrypsin Deficency? Its a simple blood test I would recommend you ask for one or contact a Clinic in UK if your in UK to have the test done from home, if you need more information pm me. You appear to have classic symptons of AATD. That has and needs to be established quickly this is a genetic disorder. 
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    • Posted

      Hi. It was suggested to me last week that there is an inherited form of Emphysema. I have had bloods taken now so hopefully will find out more shortly. Any further information will be appreciated though.

      One question I do have though; I have noticed that I am getting increasingly more tired. Could this be a symptom of my condition progressing or my medication being increased. I have now been prescribed log-term antibiotics.

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    • Posted

      Do you have a email address? Let me know i run a group for AATD for the UK and one for Global we are big community , I can add you up with us on F.Book pm me . I was diagnosed aged 46 after suffering a yr. Out the blue no warning its a genetic disease and a progressive one so there is a great deal I can help you with and also advise you on. You inherit one bad gene from Mum and one from Dad your family will need to be tested if your a positive and I suspect you will be. Let me know there are lots of organsiations that help with AATD as we call it, it is a metabolic disease so the primary is Liver, you cannot relese a glyco protein that protects the lungs in most people which is why we get damage young without the protection and such we are open to severe damage which is mostly early emphysema and sometimes liver damage too due tot he build up of the protein we cannot relese into our bodys, we only have a very small amount of this which should come back as your serum count and your genotype should be included in that too. Most people with alpha are ZZ but there are over 100 alleles out there . We are not rare just rarely diagnosed do you live in UK? I can pass on lots of info our group is there to help too...let me know your e mail address and I can talk there in private when you find out more or happy to add now its up to you. Sending my thoughts for a postiive outcome.   
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    • Posted

      Eco and Kitten:

      For more security please be sure to exchange email and other private info via PM on this site, rather than in forum posts.

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    • Posted

      Thanks for the info aitarg 35939 can you explain how to pm on here please new to this site? thanks in advance! 
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    • Posted

      I can tell you, just click there name if they have private message enabled you will see the send message option.
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