Two lung diseases

[skipwork]

I have had sardcoidosis for 40 years and brochiectasis for 20 years. I have been doing postural breathing twice a day for 35 minutes on the floor with very sloping pillows and cushions. Is anyone in a similar condition and any tips? I have just had a 'wicked' infection.

[cofdrop-UK]

So sorry to hear you have 2 lung conditions. I am hoping you have a respiratory consutant with a special interest in bronchiectasis/sarcoidosis but can’t understand why they haven’t referred you to a respiratory physiotherapist.

I appreciate you have been doing postoral draining for 40 years. I have done postural draining with percussion all my life and I have to say when the chips are down I personally find it gets a lot up. There are however newer methods and you, along with a physio could find a technique and gadgets which suit you. Please make sure you get referred.

Not up to speed with sarcoidosis I’m afraid but bronch and I go back a very long way. There are some vidios on physio on the ERS link which I was happily involved with.

europeanlunginfo.org/bronch...

Good luck

Cx

[skipwork in reply to cofdrop-UK]

How kind of you to reply. Instead of packing cushions on the floor to do 'sloping' postural drainage twice a day, I now use the bed which is propped up and put my head at the lower end. Also I keep my bedroom warm all night. It helps somewhat. The cold air makes me cough.

[cofdrop-UK in reply to skipwork]

Whatever works for you I would say. My physio did have a job talking me round to not doing postural at night due to reflux and I now do other techniques in the evening.

Cx

[skipwork in reply to cofdrop-UK]

Many thanks. I cannot cope with ACBT. Too difficult. Postural breathing much easier, albeit much longer.

[sarcoid123]

I have sarcoidosis an traction bronchiecasis and produce a lot of phlegm every day. I wonder if the following would help you. I take carbocisteine to make the mucus thinner -prescribe by my octor.

To clear my lungs of phlegm every morning and before bed I do Active Cycle of Breathing technique (ACBT) - also known as huffing - which was taught to me by a physiotherapist to cough it up and then I don't cough during the day or when I lie down. If I don't do ACBT at nighttime my lungs "rattle" and can't lie down.

There is lots on the internet, especially Youtube, teaching Active Cycle of Breathing Technique (ACBT). I was taught by a physiotherapist to do it lying down on each side but it can be done sitting up. The link given by cofdrop-UK above is excellent.

Also you could ask to see a hospital physiotherapist who could assess you to see if you would be suitable for a nebuliser using 7% isotonic salt solution. You have to be tested to see if you are suitable. They are not very expensive to buy. After seeing a physiotherapist, I am prescribed individual ampoules containing 7% salt solution which I put in the nebuliser and which produce ‘steam’ to loosen the mucus and make it easier to cough up.

Or you could put your head over a bowl of very hot water with a towel over your head to loosen the mucus which I used to do before I had my nebuliser.

I also have a Flutter device which I bought which helps if the phlegm occasionally gets stuck after I have done my ACBT (Look on the internet to explain what a Flutter is). There is also a device called an acapella which is similar. There is also an Aerosure Medic electric device which is similar, but costs a lot of money.

I never go anywhere without a packet of Fisherman's Friend (includes menthol and eucalyptus), as if I do feel the urge to cough I suck one (a very strong taste so takes some getting used to) and the urge usually disappears.

One last thing. My phlegm is white, but I have been told that if it goes yellow or green that may mean I have an infection and I should ask my doctor's receptionist for a little pot, cough in to it (in private!), and the doctor will send it to the local hospital for analysis to know which is the best antibiotic to fight it.

[skipwork in reply to sarcoid123]

Thanks for your reply. Does anyone know of a self help group for Brochiectasis that meets in the Bromley area, Croydon area or London?

[cofdrop-UK]

Great reply from sarcoid, especially with regard to saline. If you have a nebuliser and your GP will prescribe 0.9% isotonic, you could try that. If your consultant decides hypertonic saline would be beneficial to you, then you would have to be assessed at the hospital. Hypertonic comes in 3 strengths 3%, 6% and 7%. It works by osmosis drawing in fluid into the lungs which makes it easier for you to clear your lungs.

I would have thought if the consultant feels it would be beneficial for you then with your conditions, I would have thought the hospital would let you have a nebuliser on permanent loan. If not pease make sure you get the form to claim medica VAT exemption.

Cx

[skipwork]

My brochiectasis is much worse. I am struggling for breath when I bend over and for the first few minutes of my postural breathing, Any solutions? Should I see a doctor?