New journey

[Dawnsunny]

Hi I’m wondering if there is anyone like me just starting on their Bronchiectasis with Pseudomonas journey?

It would be good to talk.

😊

[Hidden]

I was told for last five years I Bronchiectasis to be told other week by new doctor I don’t and duly had my maintenance antibiotic’s stoped.

Funny thing is I have elarged airways expect given resented events it’s not very funny.

Even talk of care of community I guess like that Liverpool Hospital Scandle.

Hope you journey going to be better than mine.

[Dawnsunny in reply to Hidden]

Thank you for your reply.

How do you feel now they have stopped your antibiotics?

Do you still have the same symptoms? And what do they think it is if not Bronchiectasis!

[Hidden in reply to Dawnsunny]

Hi I know I feel scared now stoped them I do have steroids and antibiotics BUT have not taken them yet.

My Spo2 is ok SO don’t know if it’s asthma or panic but am congested.

Still got throat issues but think that’s fungus oral thrush AND that makes you breathless.

Since been on thrush drops not suffers ascid or terrible bloating.

Would be nice if doctors was tad more intrested and explained things as am sure lot less suffering would be going on.

As to what they think is going on I think they think I have been colonised GUESS time will tell.

But think am going to hold of on antibiotics well for now

[Kerrieblue]

Hi, I nebulise Promixin for pseudomonas, a bit of a faf twice every day but it keeps it under control. I was told you never get rid of this once it arrives, I’m ten years into my journey with it!! PM me if you want to talk.

[janice01 in reply to Kerrieblue]

Don't give up hope, l had it for around 7 or 8yrs.

Have been free of it for past 5yrs...

[Dawnsunny in reply to janice01]

Wow Janice01 that’s brilliant!

How did you manage that?

Do you take any medication now?

[janice01 in reply to Dawnsunny]

Yes l have the usual inhalers and taking co-trimoxisal (not the correct spelling) ×3 weekly.

Have ciprofloxacin as rescue meds. 750mg x 2 daily for 14 days.

Recently had a stenotrophamonas m. In lungs so was told (by Brompton) to take co-trimoxazole 160/800 ×2 daily for 7 days.

Awful side effects but did an excellent job!

Good luck, stay in touch

Janice

[Hidden in reply to Kerrieblue]

I had to nebulise Colymycin 4 times daily with my first Pseudomonas (after 2 weeks IV ABs). Now I only need the IVs. It's a dreadful infection.

[Dawnsunny in reply to Hidden]

O no 😞 so sorry to hear that . Hope your ok

[Dawnsunny in reply to Kerrieblue]

Have done Kerrieblue, thank you

[Claudine]

Welcome - you've come to the right place. Lots of help and info on here.

My Bronchiectasis was diagnosed approx. 5 years ago. Pseudomonas now colonised. I have Duaklir inhaler twice a day. Azithromycin 3x a week which keeps the pseudo just below the surface. Rescue pack from GP of Ciprofloxacin for any flare-ups. I have had Tazocin by IV on one occasion when the above didn't work. The most important aspect I think is the clearing out of mucus otherwise the pseudo will take over. It's hard work and exhausting but well worth it.

Please ask if there's anything I haven't covered! Good luck - it's not a disease, it's a condition.

[Dawnsunny in reply to Claudine]

Hi Claudine,

Thank you for your reply.

I was diagnosed with Bronchiectasis in September last year and I now have Pseudomonas. I was given 6 weeks of cipro to try and eradicate it but sadly it didn’t. Consultant is now arranging for me to go on nebulised antibiotics. Obvs being new I’m wondering why you aren’t on this?

Do you have flare ups often on your regime? Just how poorly do you feel during one and are you able to still maintain your normal daily routine?

Just wondering if s flareup means I’m in bed for days as I work full time xx

[Claudine in reply to Dawnsunny]

Anything nebulised has never come up. The IV antibiotics I had were in hospital, every 8 hours, although he would let me go out and back home in the day time between these. That was 18 months ago now. Presumably he is trying to keep you at work and this is the best solution for you I guess. A flare-up usually results in temperature, absolute lack of energy and generally pathetic, quite apart from hacking cough! Have you seen a physio? They are handy for advising about mucus clearance. The one in hospital said I'd got it licked and he couldn't offer anything else so I've learnt quite a lot on the way. Good luck.

[Dawnsunny in reply to Claudine]

I just wondered if everyone with Pseudomonas went the route I’m being sent on, it’s interesting to hear it’s not. I shall ask my consultant next time I see him.

That’s fantastic that you have been so long without a flare up!! 👍

How long does a flare up last?

I have been seen by the hosp physios, I couldn’t get any mucus up doing the breathing so I now have s flutter device. I find that better, but thankfully still not loads of mucus. I hope I’m doing it right.

How do you do your clearance?

Sounds like you have done so well xx

[Claudine in reply to Dawnsunny]

The brilliant thing about this site is the fact that we can share info and it gives us the ammunition to ask the medics about stuff you've discovered! Sometimes I think they involve you more if they think you're 'switched on'! I think you've probably picked up that most GPs seem to be hopeless about Bronchiectasis because they have the most experience of COPD.

A flare-up lasts as long as the course of antibios and then a couple of days! That's why we usually have a rescue pack so that we can start is immediately, rather than waiting for a doc's appt.

My mucus comes up pretty easily if I just lie flat. I can't sleep on my back for that reason. I get up my 'meatiest' stuff at lunchtime after I've been active in the morning. I also take this opportunity to do my pelvic floor exercises because coughing puts that area under a lot of strain!

My next battle is trying to put on weight. I'm being sent to a nutritionist so I'm not very hopeful, frankly. We'll see. We burn up quite a lot of calories coughing and with breathlessness. I need to be a stone heavier really. Heyho.

[Dawnsunny in reply to Claudine]

This is all great info!

I go to the gym sat and sun morning and find mucus comes up itself after exercising. I’ve lost 3 and a half stone so far, don’t want to lose any more.

I was diagnosed with diabetes around the same time so was determined not to have probs with that too so cut out sugar, carbs and no alcohol!

But now I’m not sure what to eat 😩.

Seeing the diabetic nurse on Friday to discuss.

Wow lying flat? So you don’t even have to do the breathing? That’s great, wish mine did!

I’m loving your information thank you x

[Claudine in reply to Dawnsunny]

I'm so glad you've licked the diabetes. That's great. One condition is enough eh? One thing I forgot to mention.... I don't know which inhalers you are on but after my last hospitalisation the Consultant changed mine to Duaklir because he thought the steroid in one of the others was aggravating my pseudomonas. Duaklir is a newer drug than Seretide and Spiriva which I was taking at the time. Yes, I've used the flutter too (my GP had never heard of it!). Incidentally, the lying flat thing does mean I have to sort of start it off but it doesn't take much once I've exercised, as you say. I have to time the coughing session so it's before eating otherwise I run the risk of it making me sick.

Do you know what caused your Bronchiectasis? I have a distant relative who, at the age of 4, developed it in one lung (she lived in the coal mining area of Wales) and, in those days, they removed the lung! How things have progressed, thank goodness. But there are plenty of people on here who've had it for decades so that helps you to feel positive.

Looking forward to the Spring!

[Dawnsunny in reply to Claudine]

I can’t wait for better weather, I’m so fed up of this wet stuff!

I’m on Seretide 500, been on it for about 2 years (I was only told I’d have it for 3 months!)

At my last hosp appt consultant told me he would be changing it on my next visit, can’t remember the name he said it would be changing it to🤦‍♀️but think it did begin with a D.

I’m not entirely sure of the cause of my Bronchiectasis, I think it could have been acid reflux?

Yes I’m glad of that too, it’s s good sign xx

[Hidden]

My son's partner (also Dawn) also has Bronchiectasis, but no Pseudomonas.

[Dawnsunny]

Thank you for your replies.

I think because I feel so well, ie little in the way of cough or muscus im not breathless and I feel normal that I can’t understand why I have to have nebulised abs? I’m just scared 🙁

I’m worried I’ll feel more ill taking it.

Please can you advise x