support

[Amey94]

hi, I received a diagnosis of bronchiectasis via a letter following a chest ct scan. I’d never heard of this condition before nor had it ever been discussed with me during an appointment. Despite me still being under the care of respiratory, I have been told it is roughly a 9month wait for an appointment. I feel very isolated and anxious as I am worried that by the time I get to see someone and we start treatment, even more damage will have be done. I am needing antibiotics and steroids pretty much monthly now for chest infections.

[MiniGirl22]

Hi Amey

Try not to worry. I was in your position. I had infections non stop for 4 years before diagnosis (and that only happened after I had a major lung haemorrhage!)

I then got referred to see the consultant who ordered lots of tests (xrays, scans, broncoscopy for bugs, and tons of bloods) Once the diagnosis was in, the consultant then referred me for physio to learn lung clearance, and pulmonary rehabilitation to start me moving, which I was terrified about at that stage as I could hardly breathe and was just tired all the time. The process is slow, but you will get there, and it will be ok. Most people end up on long term antibiotics to try and keep the bugs at bay (azithromycin) which honestly was life changing for me. I now have around 2-3 infections a year.

The hardest thing is to keep your mind positive. It will get better. Try and rest if you can. The infections may keep coming until they can sort lung clearance and meds, but it will be ok.

Kind wishes and wishing you well.

[Lybra]

I too have this, but with the state of the NHS, it is difficult to get proper treatment. Best thing I can tell you just now is , look up the NHS site online, it gives guidance on this , and many other conditions.

[Mooka]

So sorry you find yourself without support. Head over to the asthma and lung conditions website where you will find a lot of guidance on Bronchiectasis. Then look up active cycle of breathing on YouTube to see how to clear your mucus. You need 2 weeks of antibiotics a week won’t clear the infection. You will also need a doc that specialises in Bronchiectasis because GPs know next to nothing about it and general respiratory docs don’t know a lot more. As for treatment it usually consists of taking something like carbocistene to thin the mucus and clearing your lungs daily. Getting two weeks of antibiotics at the first sign of infection. It’s a good idea to take a sputum sample to your GP to get it tested to see which antibiotics you need. The asthma and lung conditions threat on HU have a few bronchs who will also give you plenty of advice. Get this under control and you can live a pretty normal life again. Just avoid people with colds etc.