Bronchiectosis/ aspergillosis - Bronchiectasis Su...

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Bronchiectosis/ aspergillosis

Chelseyjane
Chelseyjane

Hello ! So after 10 years of being told I had asthma .. countless infections and breathing problems needing antibiotics and steroids constantly ! .. I finally had a diagnosis of Bronchiectosis/ aspergillosis .. could anyone tell me how they’ve managed with / without medication for this disease anything special I should be doing to try and stay well ? .. I have my inhalers and steroids daily but are there other alternatives to help ? 😊

12 Replies

What is your lung hygiene like? Have you had advice about clearance?

Chelseyjane
Chelseyjane in reply to Bella395

Lung hygiene ? .. that’s a new one to me I was just given steroids and sent on my way ! ..

Bella395
Bella395 in reply to Chelseyjane

Oh dear, that’s bad. Lung clearance is key to keeping infections down. Sputum that is stuck in the lungs is an ideal medium for the growth of bacteria. You need to see a bronchiectasis specialist if possible. They will have a physiotherapist who can help you with this.

There are various techniques, devices and medications that help get the sputum up and out. Twice daily clearance is useful. There are lots of posts about this - just use the search box. Some search terms: hypertonic saline, carbocysteine, Flutter, Aerosure, Acapella, active cycle breathing.

It’s also useful and recommended to have immunity tests but a specialist consultant will know this and will arrange for them to be done.

Chelseyjane
Chelseyjane in reply to Bella395

Blimey you’ve told me more than the respiratory doctor at the hospital!!! I’ve got quite a lot of sputum .. they told me I had damage to both my lungs I was given a 5mg steroid to take every day for 6 months which I’m not a fan of taking really .. my next appointment is quite soon I’ll enquire about physio I’m constantly coughing and not clearing properly 😓 I get quite a lot of pain too it’s not a nice condition

Bella395
Bella395 in reply to Chelseyjane

Steroids can only help so far and of course they can have side effects. You must be proactive and push for the proper treatment to get your illnesses under control. Bronchiectasis with asthma is double trouble so please see someone who knows how to deal with it. You should not settle for a general respiratory consultant - they don’t always have the information and resources to deal with complex cases like yours.

Bella395
Bella395 in reply to Chelseyjane

Please push your gp for a referral. If you don’t know any bronch specialists just ask but mention your home area. This, and lung clearance need to be your priorities at the moment.

Chelseyjane
Chelseyjane in reply to Bella395

It was a battle to be referred to respiratory in the first place .. this just suddenly started 10 years ago when I was pregnant with my first daughter .. they just labelled me asthmatic without tests .. I can’t tell you how many times I’ve been back and forth to the GP .. thousands I expect ! .. it wasn’t until last year they finally referred me to the respiratory they did me a spiro and said it was normal I’m not asthmatic .. I carried on complaining to another doctor who was just a stand in for the original speicalist and I think he must have listened to me this time he sent me for a CT on my chest and that’s what they found broncho .. so when they did finally tell me what it was I think I was probably overwhelmed and shocked I didn’t know what to ask about .. but then I would have thought they would of given me information on the condition but nothing so I’ve been left in limbo again reallly .. I’ll mention the things you’ve said and see what happens. Id never heard of it before he said it was quite a rare lung condition I also didn’t realise there was a Bronchiectasis specialist I just thought it was respiratory and that’s it .. it’s been a real nightmare to be fair maybe I should complain 😂

Bella395
Bella395 in reply to Chelseyjane

I will explain why I have commented on your thread in case it is of any use to you.

I am a carer for someone who has bronchiectasis and asthma. He was under the care of a respiratory unit who treated him as COPD. He was very poorly with virtually back to back infections and frequent hospital admissions. They did not address the issues that are specific to these conditions and they did not follow the British Thoracic Society Guidelines on the Management of Bronchiectasis. He is steroid dependent and at one point the consultant put him on high dose for a month. He was no better and the high dose steroids were contributing to his immune deficiency which they didn’t test for and should have.

He is now under the care of a specialist at another (teaching) hospital with a large respiratory unit and team of consultants. Treatment changes have resulted in a much more stable situation. In ten months he has only had one infective exacerbation. This is the result of better clearance and appropriate long term antibiotics. They also immediately tested for immune deficiency and he was found to have panhypogammaglobulinaemia. This has now been followed up by an immunologist.

You are more likely to find a bronch specialist at a teaching hospital but you might have to put your foot down and insist on another referral. From what you have said you are currently not being given treatment specific to bronchiectasis. It can be hard to get the referral so my advice would be to find a suitable consultant who is reasonably close to your home and ask your gp to refer you. It is your right to have a second opinion. I found a consultant online and telephoned the medical secretary for advice. It worked well.

Chelseyjane
Chelseyjane in reply to Bella395

Thanks for your advice ! .. I live on the Isle of Wight I don’t think we have. Very wide range of care here for a lot of the medical needs here a lot of people have to go over to the mainland to get treatment for things now it’s quite poor .. maybe I’ll discuss it with the specialist when I next go .. I’m only 32 ! Im a mum of 3 I want to be well for them as best I can .. I know this thing is incurable but I want to be able to manage without having the steroids as much as they help as soon as your off them your back to square one it’s ridiculous!

Bella395
Bella395 in reply to Chelseyjane

Re seeing your current consultant about a referral - I asked the previous consultant about this and he said there was no point. He was wrong. It is up to you but it might be better to discuss it with your gp once you have found someone on the mainland who specialises in bronchiectasis. At your age and with aspergillosis a specialist would be useful. Bronchiectasis can deteriorate with repeated infections, that is why it is important to prevent them. Steroids will dampen down the inflammation but that’s all. Bronchiectasis is also known as non cf bronchiectasis because it has a lot in common with cystic fibrosis.

Chelseyjane
Chelseyjane in reply to Bella395

So I had an appointment with the ENT for a long running seperate issue nasal polyps/chronic rhinosinisitus which I’ve had 2 ops on etc and that doc decided to refer me over to Southampton general which apparently also is one of the biggest lung specialists too ! So he recommended me get in contact with my respiratory one and see if he would do the same .. so called his secretary and explained my case and she was in agreement I should be moved over so fingers crossed that will happen now :. She was shocked id been palmed off for 10 years as something else and not had all the right tests .. I wonder if I should complain ?

But anyway if you hadn’t of responded I wouldn’t of had any clue about what could potential be available to me ! So thank you !!

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You could try a Himalayan Salt inhaler - this helped me.

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