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?
Sorry i have no idea but i am sure someone will answer soon. But if you have had Emphysema since you was 38 i would not worry to much but i am no expert. i was told last year i have Emphysema changes.
Thank you for your reply John. I just wish the specialist was more specific. What does significant mean?
I thnk it means quite a lot but not really bad ? i have not seen lung specialist only nurse for lung function tests, but when you ask questions it's like trying to get blood out of a stone.
It is John. You either get medical terms which need to be translated or vague statements. I visited my GP and asked home if I needed to worry. He asked why I needed to know as it would not change anything and the treatment would remain the same.
If you have your lung function results they will give you a good indication. Unfortunately, I didn't ask for mine.
yes i have mine 2 lot's from 2 tests over 6 months last one it had improved which is good. when i asked my doctor about it he said don't worry you will die of something else before that gets you ? since then he's sent me to hospital for prostate problems but hospital said it's fine ? now got to go with my tongue again next week. it's one thing after another drives me mad.
It sounds like any improvement is good news. Thank you for your advice.
Well not sure i give any advice to help you really, I know you said you never got your lung function results but you can ask for them anytime you want ? i keep records of everything i do and also record all my conversations at appointments with the nurse and doctors so i can listen to them after because i always forget what they said.
I have never thought of asking for my results before. Unfortunately, I would still need them to be translated. It's all just numbers to me. I know the Doctor was using the test results more than the scan results to aid his diagnosis. I know my FEV1 was 179 but it should be scored as a % and I don't know what that is.
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?
When you get the results you can this checker below, just put the numbers in and it give you all the information you need. My FEV1 was 3.24 but you need the others to check it.
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.
I will call the surgery on Monday and request a print out of the results. Thank you for the link.
No worries glad i ould help, your doctor seems a bit usless you need to be firm and tell him he want to know your not a child. Or even better get online access to your records like i have.
Are you in UK
I know, I am too soft. They always seem toof busy and in a hurry.
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.
Thank you for your reply. I will contact the BLF tomorrow.
I guess a little more research is needed.
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.
Did you get your results and check them ?
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.