Bullous emphysema Question ‘info needed please’

[Jamesdimitri]

Hi everyone hope your all doing ok and enjoying your Sunday I’ve been a member here for about a year now and I really enjoy reading all of your posts I’ve not ever posted my self so if this ends up in the wrong place my apologies. I was diagnosed last year with widespread bullous emphysema and copd I wasn’t given any details or explanation of the deiese or how it will progress so today I was wondering and I decided to google which upset me greatly as far as google is concerned I get 5 years to live from diagnosis so I was wondering has anyone here got bullous emphysema and when they were diginosed and how it has progressed and so on as like I said I wasn’t given any information at all when I was told. Thanks in advance dimitri

[Damon1864 Volunteer]

Hi and welcome, please take some advice don't Google it, I've had COPD for about seventeen year. Eat healthy and exercise daily only as much as you feel able to, and if you smoke please try to stop, and always stay positive you will soon start to feel much better. Get some leaflets from the site it will help you and there are people you can talk to. We all support each other and help out, but we aren't medically trained so best to as the site administration or your GP and respritory team. Hope this has helped, please keep posting have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx

[Jamesdimitri in reply to Damon1864]

Thanks for your reply I appreciate it have a good night

[Hidden]

Hi James

I would really go with what your own consulting doctor advises about this. Some of the information when searching google is not accurate for individual cases so I wouldn't pay too much mind to it.

You are in UK so any searches you may do, be sure to put NHS UK after it,

Websites such as BLF.org (the BLF link below explains about emphysema and when it is referred to as Bullous. I hope this helps

blf.org.uk/support-for-you/...

NHS sites

Patient UK etc

Don't hesitate to give the BLF helpline a call on Monday for further advice and support.

Best Wishes

BK

[Jamesdimitri in reply to Hidden]

Thanks for your reply, I don’t usually google but when I was diagnosed last year before covid my consultant left it down to a junior dr to notify me of my condition which she did while I was standing in the waiting room full of other patients so she didn’t give me Evan the slightest of what the condition entitles or how it would progress and all the nurses I’ve spoken to since talk simply about copd which I think is quit different to bullous. I will take your advice and call BLF Helpline tomorrow thanks and have a good night

[Hidden in reply to Jamesdimitri]

Emphysema does come under the Banner of COPD as dose chronic bronchitis. So glad you will give the helpline a call tomorrow as they can also advise you what questions you need to ask.

Best wishes BK

[sindypiper]

If I trusted everything on Google I'd be in a mental institution by now. Everything related to COPD always states the 5 year life expectancy which isn't exactly true. Best to speak to a medical professional.

[Jamesdimitri in reply to sindypiper]

Yeah I know I don’t usually Thanks

[Alberta56]

For what it's worth, my dad was diagnosed with emphysema in his early 70ies and lasted for another 12 years or so. He was pretty fit but had smoked all his life and never managed to kick the habit. That was way back when not many people lived beyond their 70ies. I hope you can lead a good life and last into your 80ies- or 90ies.

[Jamesdimitri in reply to Alberta56]

Thank you for your reply have a nice day

[Hidden]

Hi to you Well when I was first diagnosed it was emphysema then they found bullae then they say I have chronic bronchitis so I’ve been rounded off having copd, but my point is I have lung bullae with emphysema not bullious emphysema I’m not sure if there is a difference between the two but when I have x-rays sometimes it will say some bullae changes, I think that means they have grown a bit. I have had this for 17 years and they have not changed too much thankfully 😅 if you do google you should use the nhs sites only, you say you have been reading this site for a while I’m sure you will know how good people are on here they are very well informed more than the experts as we are living with these diseases where as the medics only read about our diagnoses. Like yourself they don’t inform us about lung bullaes I got a copy of my medical records to see exactly what was going on and I found out I have multiple lung bullae but again I have been living with this for many years and you more than likely will to!

[Jamesdimitri]

That’s a little bit reassuring for me thank you for taking time to reply to me I really appreciate it the fact that your still going 17 years after being diagnosed is some relief for me. I wish you well, have a nice day

[Snackjack]

When I was diagnosed with Emphysema and Lung Cancer, like you I went to Dr Google, bad idea as like you it appeared that I only had 5 years to live - wrong . I suspect that the 5 years comes from how long that people are followed after diagnosis. Speak to your GP or your Consultant for factual information. I have learned not to go to Dr Google. Check out BLF or the NHS but NOT Dr Google as like you it did upset me as well. Best wishes xx

[Jamesdimitri in reply to Snackjack]

Thanks

[lgf151t in reply to Jamesdimitri]

I had two large boullious removed through keyhole surgery Dec 2019 I was in for lung volume reduction surgery due to extremely bad chest discomfort, I did not know until after op that that I had bullae ( dunno bout spelling) I had to be persistent as some docs did not want to operated due to high risk as my lungs are v bad and I'm very frail but life was unbearable, my breathing had not improved much but this not a given, the reason for the op was to make me more comfortable and I am, I don't suffer as before and am grateful for the docs and surgeon who took me on at Golden Jubilee Glasgow. I can only advise if things get bad there are things they can do for these conditions and how long a person will live is very hit and miss lots of the time, see your docs don't always rely on Google. Best wishes.

[Jamesdimitri]

Thank you for you response I appreciate it wish you well with the future goodluck

[1968]

Welcome to the club.

Don't google, get a CT Scan and lung function test, ask your doc loads of questions.

I have the same as you, wide spread in top left/right lobes.

Exercise is key, breathing exercises, give up smoking & dont near/in hael fumes, smoke ect.

Study up on your condition, its a life sentence but bet you dont die from it.

[Jamesdimitri in reply to 1968]

Thanks for your reply I appreciate it I see a few of your old posts and reading them gives me hope for the future for myself I’m waiting to get on a pulmonary rehabilitation course iv heard they teach you breathing exercisers so hopefully that comes up soon iv also got a nodule which was in my left upper lobe and was 7 mm when last done a ct scan a year ago before COVID iv just done another ct this week so I’m hoping it’s not growing and it might disappear if that’s possible anyways good luck too you

J