Apologies for the long post but I would be so grateful for any advice or shared experience.
I was diagnosed with Bronchiectasis ten years ago and then given Azithromycin for three days a week. I took this for a year and it helped enormously but I developed Ulcerative Colitis and had to stop taking it. Since then my Bronchiectasis has been fairly well controlled until this year. I’ve had seven chest infections which have finally cleared up and I have not had to have antibiotics for two months. Unfortunately I have developed a very bad wheezing at night time which is causing terrible sleep issues. It’s still there during the day but intermittent and I can ignore it. I am currently having to sleep (or attempt to) propped up on four pillows, but this still does not help. The wheezing is in the same place; it feels like something is sticking or obstructing my breath. I have had several visits to the GP who has referred me back to the hospital but I am still awaiting an appointment.
To be honest, I feel quite worried now; and exhausted with such poor sleep.
Any advice would be gratefully received.
Post Covid/Long Covid with Bronchiectasis
bronchiectasis flare up
Bronchiectasis and Infections
Help with Bronchiectasis flare up.
hi rosco59. I' sorry that you have been struggling this year. 7 exacerbations in a year is not usual for bronch and means that it really needs attention from someone who knows what they are doing.
Your GP is out of their depth with you and you need specialised help. It seems that you have not been getting the right antibiotic in the right dose or length of course to really tackle whatever bacteria is giving you the problem. Hence the resurgence very quickly afterwards.
Bronchiectasis is far too complex to be left to the efforts of a GP. They simply know nothing about it and confuse its treatment with copd.
I'm afraid that you are going to have to get pro active. Simply being referred to the respiratory unit leaves you at risk of being seen by a general respiratory consultant. These do not have enough training or experience in bronch to know how to treat you efficiently. You need a bronchiectasis specialist and once you get to them you need to remain under their care with regular visits at least every 6 mths and the help of their physios and bronch nurses.
I suggest that you look on the websites of teaching hospitals in your area. Find a bronch specialist. Take the name to your GP and insist on a referral. DO NOT TAKE NO FOR AN ANSWER.
It could be a good idea to ring the consultant's secretary, explain that you have bronch which is not being treated properly and ask if they would take you on from a referral from your GP. You can then go to your GP armed with this information.
The normal amount of bronch exacerbations in a year is 1-3. Getting into a spiral of many and frequent exacerbations leads to more damage and needs to be knocked on the head asap.
Good luck. I do hope that you soon get proper help to end this cycle of misery.
Thank you so much. That’s very helpful. I’m afraid I’m not very proactive but I see that I need to be. I really appreciate you taking the time to reply.
Take someone with you when you see any medical people Rosco. That really helps us to have the necessary courage to communicate firmly with our GPs. Also I think that knowing they are being witnessed make them feel more accountable. Good luck.
That’s a good idea. I will do so. Thank you