Hi I now have Bronchiectasis on the back of Pulmonary Fibrosis. Consequently I’ve had chest infections this winter which I haven’t really had before.
I have a consultation coming up with my hospital consultant in a couple of weeks & knowing there are many on here with greater experience just wondering if you have any good pointers/questions for the discussion?
(Ps I’m now listed for Lung Transplant so trying really hard to stay healthy !)
Can’t really advise but I think I could be going down your route but won’t know until inflammation is under control? That’s if they can get it under control. I’ve had serositis causing bilateral pleural and pericardial effusion for over a year, numerous infections also have bronchiastasis and asthma plus RA . My consultant has told me there will be a lot of damage but they won’t know how much until the inflammation and fluid is cleared. I scored very poor on spirometry. I won’t be a candidate for lung transplant due to cormorbidities.
Good luck
Wendy xx
I'm sorry that you have all of this to cope with. Bronchiectasis in addition to pulmonary fibrosis makes life complex. As far as the bronch is concerned. You need to make sure that you keep infection to a minimum by emptying your lungs strictly every day to rob the germs of the warm wet environment which they like to breed in. Ask your consultant for their physio's help to learn to do that.Prompt treatment of any exacerbation is important and so your consultant should write to your GP to give you 14 days of the antibiotic they think most appropriate as an emergency pack to keep at home and as soon as you feel unwell,( darker thicker sputum, tired breathless) you take them.
Try to stay away from people with viruses.
I don't know what the routine is with pulmonary fibrosis but with bronch, regular exercise that you can cope with is good because it helps with breathing and loosening mucus. I hope that helped a bit.
No advice sorry Tawny10...but just want to wish you well.🐕Gnasher
Self management& self care are the mainstay of managing bronchiectasis. Swizzy covered the main aspects of that.while u wait to see a lung physio,take a look on aluk website at lung clearance techniques- acbt,huffing etc.there are videos too so u can practise this - everyone has own way but I was told to use salbutmol first to dilate airways+ I use disposable cups, which i put used tissues in to dispose of in nappy bags.i like to lie on my bed to do it,on alternate sides( postural drainage). Ask consultant to request that gp allows sputum samples to be put in as needed xxx
See if you can get confirmation of the current N.I.C.E Guidelines for bronchiectasis treatment , I believe it used to be a renewable prescription for 14 days of a good antibiotic, sputum pots to use for testing the mucus when infection is suspected along with the relevant form, referal to a consultant (which you already have) preferably one with experience of bronchiectasis & something else I cannot recall. Check the consultant will write her/his instructions to your gp as the gp is obliged to follow cons instructions. As the others suggest some some support in learning lung clearance (some people use a device like aerobika). Somewhere within this forum is some info on bronchiectasis/bronch which maybe useful and there's also NHS website.
Wishing you all the best, P
Edit: I just remembered the other thing - twice yearly reviews!
Hi, ask about use of Azithromycin 3x per week, to help keep bugs away. My wife has been on Azithros for last 6 years or so and has fewer infections than otherwise. Also, take as much excerise as you can to make your lungs work, and get rid of the congested muck. Hope that all goes well, Chris.
Hello,
It’s been a heck of a winter hasn’t it for assorted lung infections. I don’t have PF but severe COPD and have had the worst winter ever in 22 years plus picked up a diagnosis of Bronchiectasis as well.
You have had done good advice here from folk who have it as their primary diagnosis. Keeping the lungs as clear as possible is the main thing for me.
Go well and wishing you good health when your transplant comes along.
Pauline
I can't add to the good advice you've already had. Just wanted to send best wishes.
So sorry you have so much to deal with!I have bronchiectasis & with constant infections was put on azithromycin daily, then reduced to 3x weekly. Infections reduced dramatically.
Other stratgies:carbocisteine 2x2 capsules daily, 7%saline nebulised followed by postural drainage & just recently nebulised colomycin to combat pseudomonas. Also ventolin & Symbicort inhalers.
You u need to know what the infections are caused by & have a rescue pack of antibiotics. Put regular sputum samples in especially if unwell to check antibiotics are correct.
Good luck! Xx
Wishing you well. You have got some sound advice from others. I think it’s been a bad winter in regards illness for quite a lot of us. X
I don't have bronch. so others are better placed to advise about that but wishing you well Tawny. x
thanks for all your help & support. Some really useful tips here 😁
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