bronchiectasis/pseudomonas

Hi Debbie again.  Look up online a search of mold implicated in bronchiectasis.  Another site is Breathing Matters.  Aspergillus is the primary fungus in mold and is usually not a problem UNLESS IT IS DISTURBED.  Well, we all disturb it!  No one frankly seems to know very much at all what causes this and what to do for it!  Very scary.  My pulmo said the 2 trains of thought are:that you have bronchiectasis and because of that you will easily get bronchitis, pneumonia, etc.  the other train says frequent bouts of bronchitis and pneumonias cause bronchiectasis.  He also said that there is research being done as many menopausal women are contracting it.

I have just joined, and your post is over a year old but I will reply. This is exactly how I am. The Pseudomonas also started about 8 years ago and has made my bronchiectusis much worse. I can't do anywhere near what I did prior to Pseud diagnosis and I use antibiotics much more. At the moment nights are a problem - 3 bouts of coughing, yet not bad during the day. However, I do do exercises 3 times a day to try and keep the lungs clear. Dreading winter of course, the cold  weather doesn't suit me. This is not much help, but you may not read it anyway after all this time. 

Hi there.

I'm just laying in bed reading all conversations/advice and thought I'd say how im feeling. I was diagnosed with bronchiectasis when I was around 22 (I'm now 47) but have had it most of my life. I always had many infections throughout the year and was prescribed oral anti biotics but the infections never stayed away for very long. Then about 10 years ago they discovered pseudomonus in my sputum & I was told by my consultant that once you get it in yr lungs you rarely get rid of it. After months of being poorly I was sent to Papworth hospital in Cambridge and I was put on 2 drugs through ivs they were Trobramycin & ceftazadine. After 14 days I felt really well & infection free for 18 months I hadn't felt that well for that long in years. I had always exercised (mainly running) & believe this helped over the years but now things are completely different. , for the past 3 years my health has deterioted & I don't know what it's like to feel really well anymore. I ache all over every morning when I wake up I certainly can't run anymore (that stopped about 2 yrs ago) & I get tired easily. I have just done another 3 weeks of ivs (my 5th lot of ivs this yr) and the pseudomonus hasn't shifted. I have tried loads of different combinations of drugs but now nothing works. I used to nebuliser gentamycin twice a day but my hearing is deteriorating so I stopped that & trialled ceftazadine but that made me wretch. I'm waiting to trial meropenem but I can't see anything helping because they can't get the pseudomonus under control. I don't say much to my family of friends about how I really feel but I'm so fed up about things as it's a struggle to get out of bed somedays it's like having the flu most days. I would do anything to feel normal again but I know I never will which is the hard bit to accept. My advice to run as much as possible if your well enough, try to avoid touching soil, change the water in your vase of flowers everyday if you have flowers, avoid mould & be careful around Jacuzzis & swimming pools if they are not treated properly they can be full of pseudomonas. I'm happy to receive any advice as I've run out of ideas & so has my consultant!!

Hi Everyone.  Have you been using the Acapella Flutter Valve device?  This really does help getting the mucus up and out.  It has to be used correctly, so a breathing therapist should show you how. Also, the nebulizer solution keep it thinned and easier to cough up.  The Vest is another device I use to shake the mucus loose so the other tools can work more efficiently.   Please let us know how you are doing. 

Hello, just to tell you that I have had P.A. for the last 7 years as well and that  they cause many infections. I am on colistina (inhaled) twice a day, bretaris and seretide ( inhalers) twice a day, azitromicina 250mg. once a day for the last 4 months. Besides that I take a lot of supplements, eat very healthy, walk every day and should do exercises, which I don't... I do lots of research to see if something on this earth could help me get rid of the PA....

I. Have had bronchoectasis for the last 27-29 years..very important is the auto drainage which I do twice a day to keep my lungs as clean as possible.

i hope this information is useful and wish you all the best!

Christianne

Hi,

For those who have been hospitalised with the infection - can you tell me how long you were in hopsital for? And did they do any procedures other than the IV drip? Any bronchoscopies or anything at all?

And did the antibiotics have any side effects? Tiredness? Need to rest?

I have been told I'll have to go in in the New Year but they didn't give me any other details.

Feeling very nervous so anyone else's experiences gratefully recieved!

I'm in the UK.

pinksnugsy   I have an appointment soon with my Cons,   and I am hoping to explore IV at home.   at my hospital they do do it ambulatory  but its staill a fag going in all the time ( although better than in patient)   is it easy to do it at home?,  I have now heard of several that do do this, but mostly they live far away from their hospital, which I am not

Will they do another trial of Pulmaquin or is the 3rd one the last before it goes to the next stage?