Bronchiectasis

[Claudine]

I've had the above for over ten years. I know it is a condition and not a disease but it does take a lot of effort to manage and it does impose restrictions on our lives. I have heard of a case recently of someone being diagnosed a matter of weeks ago and she is in hospital already. Routines to follow and emphasis on the physio aspect would be particularly helpful I think.

[RoadRunner44]

Hello and welcome to our forum Claudine. Firstly, I believe bronchiectasis is a lung disease . When I was given my first diagnosis my consultant referred to it as being an irrerversible lung disease but is a manageable condition.

As you have had bronchiectasis for 10years I'm surprised you haven't been offered to attend a Pulmonary Rehabilitation Programme? I very recently attended one, a 6 - 8 week course which is a combination of exercises and education. I couldn't finish it due to the lockdown but when it is over I would suggest you contact your doctor and ask to be referred to one. You would get the answers you need and I'm sure you will find it extremely helpful.

You've found the right forum here. There will be many knowledgeable people who will be able to offer you advice.

Best wishes, I think you will enjoy being part of our friendly forum.

😊😊

[Claudine in reply to RoadRunner44]

This post was meant for Simone, Head of Product at HealthUlocked in response to her email. She is compiling packages for different conditions/diseases and this was my suggestion. Maybe it has gone to the wrong place?

I have in fact been a member here for years. It has been very useful to me but there are still a small number of Bronchiectasis sufferers compared with some others. I did also send a contribution yesterday via Adam for help with expenses as a result of extra calls since coronavirus. Just want to put our case!

[Bkin in reply to Claudine]

you've probably posted in the wrong place then Claudine if intended for Simone, Head of Product at HealthUlocked

Perhaps there was a link in the email you received to respond to same.

People with Bronchiectasis here are dealing with other lung issues as well.

Good luck with your case.

[cofdrop-UK in reply to Bkin]

I have asthma as well as BE but not everyone on here with BE are dealing with other lung issues as well.

Cx

[Bkin in reply to Claudine]

For those wanting a dedicated Bronchiectasis support there is a forum just for that here in HU :-

healthunlocked.com/bronchie...

[cofdrop-UK in reply to Bkin]

I much prefer BLF and Bronchiectasis R Us.

Cx

[Keep-positive in reply to Claudine]

Yes Claudine, unfortunately bronchiectasis has been very much the "neglected" lung disease, especially in comparison with COPD, and that came from a respiratory professor

[cofdrop-UK]

Was it the post on E-Learning Claudine?

Cx

[Claudine in reply to cofdrop-UK]

Yes, it was. There were various topics covered already but not Bronch of course and she asked for suggested conditions. Just trying to raise our profile! I have now managed to reply direct to Simone.

[cofdrop-UK in reply to Claudine]

👍🙂

Cx