bronchiectasis/pseudomonas
Posted , 76 users are following.
I am here to find patients like me with Bronchiectasis and the complication of chronic Pseudomonas Aeruginosa. I am intersted in knowing what kind of treatments they use to stay healthy. I have had theP.A. for seven years but do not have Cystic Fibrosis.[/b]
8 likes, 277 replies
flicity94519 Guest
Posted
does this bacteria get eradicated with this treatment or can we xpect it to rear its ugly head again.
our troubles seemed to start following a total knee replacement.
pseudamonas Aeruginosa is in left lung.
appreciate any insight
pinksnugsy Guest
Posted
Hi there
I've had pseudamonus in my lungs for about 10 yrs I'm afraid to say that once you get it in the lungs it rarely goes. I have about 5/6 exacerbations every year & I have to have intravenous anti biotics (when I'm not on ivs I nebulise anti biotics daily) it's all about management. Keeping your lungs clear everyday is paramount. I use an acapella which is really helpful plus I nebuliser hypertonic saline. Exercise is key so when your well try and exercise daily. I also take manuka honey and tumeric & black pepper tablets (someone on this forum recommended them).
When I'm well I make the most of life I think that's what keeps me sane lol.
Hope this helps
Rachel.
flicity94519 pinksnugsy
Posted
years and is either the cause of five bouts on pneumonia or exacerbated due to these bouts. At present only on oral antibiotics, nebulised antibiotics seems to make more sense, is this something that is applied further on in treatment? He uses a acapella device to help clear lungs so this seem to be consistent with best help for clearance. Does gym 1 day per week as well as hydrotherapy, but effort does need improving to boost overall health. Am. Concerned with a further knee replace in six months what affect it will have on the lungs with p Aeruginosa and whether it will cause any unpredictable outcomes. Have you any thoughts on this.
thanks
naila17308 pinksnugsy
Posted
pinksnugsy naila17308
Posted
Hi there
An acapella is a device you blow into that gently shakes your lungs to help clear the mucas. I got mine from my hospital but if you aren't able to get one off your hospital they are available online to buy. I find it very useful especially when the mucus is thick and hard to shift.
Hope this helps.
Keep well
Rachel
naila17308 pinksnugsy
Posted
carol46980 Guest
Posted
Hi, I have had sever bronchiectasis/pseudomonas for over 8 years, then an autoimmune diesease 3 years ago. Did a lot of research on the internet, tried many diets and spent heaps on pills. But how do I know if this is what my body needs? Then I come across Functional Diagnostic Nutrition (FDN) health coach (11 months ago), they test your hair, urine, blood and stool, questionaire about you/health. I haven't met the coach, this is done over the phone and email, and tests by mail. I was put on a diet to suit my body type; for me, meat and veges. My body was lacking nutritents and minerals. Taking a few supplements. Going organic and natural personal products. I decided not to take any antibiotics and most pills offered by doctors. I wanted my body to heal naturally. I feel when I get sick, my body does the same thing, whether on antibiotics or not. Antibiotics has really messed up my body/stomach. I started walking, doing up to 7km walking a day, my dogs loved it. The hospital was surprised by my lungs improvement and coughing a lot less. I feel confident that I am doing the best for myself. My FDN coach got my health better, and the hospital said the autoimmume is in remissiom and don't need to see me, and I'm slowly coming off the prednisone. I am hoping with better health, to control my bronchiectasis/pseudomonas. I don't know if it will go away completely, but am very happy with the results so far.
ohara carol46980
Posted
elizabeth49611 carol46980
Posted
Wow! I will need to check into that. Is there a website?
think the more that you go natural and less prescribed med, the better.
Beth
carol46980 elizabeth49611
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Carol
carol46980 ohara
Posted
Carol
debra64041 carol46980
Posted
Hi Carol...wondering how you are doing now? I have had asthma, bx and pseudamonas for just over 3 years-can't imagine 8! I seem to only go one or two months before needing to go back on antibiotics again. It takes almost that long to start getting over being on them. How do you deal with this? Mentally it is really wearing me. Seems like just existing in my days and not enjoying. I really try to keep happy for myself and loved ones but it brings me down quicker with each flare up. Walking on my treadmill seems to help but its like mountain climbing some days. Any good coping techniques? My best to you😊
ohara debra64041
Posted
Hi Debra, this happened to me for years, an infection every two months...then I read that every infection damages the lungs more each time ( like a vicious circle) so I was where you are now, researching .
Do you give in sputum samples EVERY infection...this is MOST important. and the sample has to be fresh when tested, so investigate how your samples are tested ( ie do they go to a lab or what and at what time) you should get the sample to the doctors within an hour or so of producing it. and that should be at the labs whiten the next few hours if possible. Unless the doctor knows what the bug is then you may not be getting the correct ab for that bug ( this turned out to be my problem) so after having Bx since a baby I have now managed to stop the 2 month infection cycle I was on
I don't fly anymore ( I always picked up an infection on any flight)
evelinda33736 Guest
Posted
nebs,advair ,Asmanex,Cipro,Topomycin,the vest just about everything.The doctors referred to the Mayo clinic but there is just no openings,Need help just feeling hopeless and tired of being this way.
mizsuzyq evelinda33736
Posted