Bronchiectasis

[Primrose63]

It’s about a year since I was diagnosed with BX following pneumonia and pleurisy. In hindsight, it may sound odd but being ill was the easy bit, what I found so difficult was getting better in body and mind. I was scared! I was very fortunate to have a chat with a retired GP who said “walk” and I now do. I have been religious doing chest clearance twice a day - my Acapella is invaluable. It can be awkward when out of routine ...I.e tomorrow off to London for the day so ACBT in the morning but then I usually do pm exercises at 5 or 6 o’clock....so worrying am I going to feel uncomfortable if we are later back on the train.

I get anxious about being in busy with people places for fear of germs....although looking back I must have been suffering with BX for sometime because I was often below par with colds and exhaustion, but nothing I could really put my finger on...so now I hope by doing the exercises I am less vulnerable to germs.

This forum is a great support just knowing I’m not alone....Thank you

[Hidden]

Hi Primrose and congratulations for getting to grips with the management of our friend bronch. And yes, you probably had it for years before it was diagnosed but now you are getting used to controlling its effects on you.

As a very very long term bronch I have a system for handling days out. For me this is important because I can never move significant amounts until at least lunch time.

So

Wherever you go make sure that you know where the loos is. If you feel uncomfortable go there and just get rid of the stuff. Ignore any funny looks when you are washing your hands.

I always keep a plastic bag and strips of kitchen roll in the car or in my bag just in case I get caught out where there is no toilet. This rarely happens, maybe if I have an exacerbation coming on.

Yes, avoid the virus spreaders like the plague- literally. Whenever I go to the theatre or other public place I put Cold and Flu Blocker ( tiny tube from Boots) around my nose and mouth. I used to use First Defence but I found this more effective and less harsh on my nose. If I start a cold I use coldzyme which usually stops it in 2 days. I take 1600iu of vitD3 every day on prescription frpm my GP.Lots of handwashing and antibacterial gel. I hope that helps a bit.

[Ergendl in reply to Hidden]

Yes, I use Nasalguard Cold and Flu Block during the occasion, and then Vicks' First Defence after I've left the danger zone, to zap any that may have got through. The challenge is remembering to breathe through the nose all the time.

[MfgWorriedmum in reply to Hidden]

Hi we chatted along time ago about my son who has persistent bacterial bronchitis, I was just wondering if you take any other supplements to keep your immune system strong? He’s just picked up a cold and I’m giving him echinacea which seems to be helping but am constantly trying to prevent this flaring up. He gets very tired. Thanks

[Hidden in reply to MfgWorriedmum]

I am concerned that your son has been left to go along with repeated episodes of bacterial infection without further investigation. Persistent bacterial bronchitis is a description of what should be a situation which goes on to be resolved. Not a diagnosis of an ongoing condition. In response to your post I have done some reading. PBB can develop into bronchiectasis if left without proper management and treatment. As you say that this flares up, I do urge you to find a very good respiratory consultant who specialises in bronch for your son.

[MfgWorriedmum in reply to Hidden]

Thanks for your reply. Yes he has an excellent specialist and is very well monitored and has t had an infection for 15 months now 🙏🙏🙏 I was asking about what I can do at home to help keep his immune system strong etc as when he gets a cold it’s a worry for me that it will go to his chest.

[Hidden in reply to MfgWorriedmum]

All I do is take vit D3

Hopefully others will see this and give you some of their ideas.

[cofdrop-UK]

Hi Primrose

You seem to have a good handle on the self management of BE and that should stand you in good stead. It is often the case that folks are misdiagnosed or undiagnosed for quite some time.

Good advice from LP re lung clearance whilst out. You can sit and do ACB and use your acapella at a pinch in the loo. Probably not as effective as doing it at home but needs must.

Cx

[Caspiana]

Hello Primrose63 . 😀

You are right to be cautious. Being sensible and taking precautions when out is the best thing we can do to keep as well as possible. Keep walking! I am slowly but surely getting back into walking, but it's taking me some time. And no , you certainly are not alone!

Have a lovely weekend.

Cas xx ☕🍀