Help!

[Manict]

I have been diagnosed  with bronchiectasis  and have pretty much been told to go and enjoy life while I can. At some point I will start needing more and more antibiotics. The doctor wasn't  concerned  that I have SOB and pain in chest. I feel a bit unsupported. Is this really the case? Nothing can be done for me.

[sassy59]

Hi Manict l am sure someone will be on soon who can help and support. I just want to say that Pete was told to go and make the best of life at 40 and he's now 64. He has sarcoidosis and COPD. Xxx 

[Manict in reply to sassy59]

Thank you. At the moment  I'm at a loss as I just didn't  feel I had any support  from the respiratory  doc. Feel I'm left in limbo.

[stone-UK]

hi

some light reading

bronchiectasishelp.org.uk/#...

[Manict in reply to stone-UK]

Oh my goodness. Thank you Stone. Looks like very interesting  reading.

[cofdrop-UK]

Hi Manict

A very wam welcome to you, though sorry you have been diagnosed with Bronchiectasis.

No wonder you feel unsupported with comments like that. 

I assume if you have been dx with bronch you have already had a ct scan.  Are you under the care of a respiratory consultant, if not you definitely should be, especially one with a special interest in cf/non cf bronchiectasis.  If you let us know of a city you can access easily, we may be able to find a good consultant and you can ask to be referred to the con of your choice.

There is such a lot you and the medics can do to help manage your condition.  Lung clearance being the most important and your consultant should refer you to a respiratory physio to learn how to do this yourself.

I hate to see people being short changed.  You will find many GPs are not up to speed when it comes to bronchiectasis and you will need to be your own advocate.

The best information in my opinion (have had bronch since babyhood 67 years) and that of many other bronchs is CHSS Living With Bronchiectasis.

chss.org.uk/documents/2013/...

A lot to take in but if you have any questions or worries at all please don't hesitate to ask.  There will always be someone around who will try and help you.

Love cx

[Manict in reply to cofdrop-UK]

Thank you so much for your help. X

[cofdrop-UK in reply to Manict]

You're very welcome Manict.

love cx

[Pentreath Volunteer]

Dear Manict - that is complete nonsense, your doctor should be ashamed of saying anything like that.  There are a number of us here who have bronchiectasis and manage to live a good life.  The advice in the comments you have already had are spot on - you need to have a high resolution CT scan to confirm bronch and be referred to a specialist consultant.  Ask, and keep asking to be referred for a pulmonary rehabilitation course; they are excellent and you will learn a lot not just from the people running the course (usually a respiratory physiotherapist, respiratory nurse and occupational therapist) but from the people on the course.  I was diagnosed some years ago but had probably had it for much longer as I have always been chesty and have had asthma for well over 25 years.    When I am well I can lead an almost 'normal' life.  When I am not I have learned to adjust what I expect I can do and to take up interests that do not demand much energy - physical and mental.  Most of us have a rescue pack of antibiotics and steroids at home and sputum pots to take sample to the surgery as soon as an exacerbation kicks off.  I am very lucky with my GPs and the receptionist who always see me on the same day I ask for an appointment and are really good.  You will probably have other people coming along to say eat well, exercise and if you smoke, please stop.  Bronch is no fun at all but you can live with it and enjoy life.  I am 75 and still doing just that.  Keep in touch, there is always good support and kindness here.

[Claudine]

It is nonsense for your doc to tell you to enjoy life while you can.  Bronchiectasis can be managed very well with help and knowledge.  Cannot add much to what others have said.  This condition does need you to be involved and your life depends on how you manage it - it takes effort.  Good luck.

[lynnekay]

If you can, try and get to see a respiratory nurse - some practice nurses are specialists in different conditions ( the one I see is a chest and diabetes expert), and maybe join your local Breathe Easy group which will be supported by the British Lung Foundation. The BLF is also a good source of support and information, and a referral to a local Pulmonary Rehab group may help you too

Hope all goes well

[Hidden]

Hi manict I can't add much to the excellent advice that the others have given you. Except to say that you will meet a lot of medical idiots who speak to you as if they know about bronch when they are totally ignorant. When I was 3 my mother was told that I would die when I had my next pneumonia. When I was 16 I was told not to travel to hot countries and never to try to have children. When I was 30 a 'Specialist' told me that I would be in a wheelchair by 40.

I am 65, have lived all over the world, travel to farflung places regularly, have 2 children five grandchildren and a full social life.

Yes, enjoy your life. It's going to be a long and full one! xxx

[Shirleyj]

I have bronchiectasis and asthma, about 4 years ago I thought that my quality of life was not the best, but after seeing my consultant who put me on a permanent antibiotic, learning how to do the lung clearance, my life has changed completely.  I went back to consultant last month and my breathing test was even better than last year.   Proof you can improve your health.   I still work, look after grandchildren, walk a lot and go for a weekly swim.

When you get the right treatment, it can be life changing.  Don't give up, ask to go to pulmonary re hab, and you can go on you tube for lung clearance techniques, this is really important, keep your lung as clear as you can.

When you are feeling stronger, get moving as much as you can, the worse thing to do is nothing.  Gentle walking will also help bring the junk up off you chest.

Take care x x

[Manict]

To all you lovely people out there who have messaged me with your support and advice. It's been really good to see I'm not alone in this battle with bronchiectasis. Thank you. X

I'm off to see GP to see about some rehab!!!

[Pentreath Volunteer in reply to Manict]

Good for you - please let us know how you get on.