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
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carol78899 Guest
Posted
wot is the PA
mary_ann_0313 Guest
Posted
I am in the states and I have not heard of any facilities in this country doing this.
There are clinical trials going on for this at U C S D, (medical college in San Diego) but they have only taken people who are close to dying with PA. I don't want to wait until my lungs are damaged badly. I am 71. I have had it for a year and it has changed my life drastically. I stay close to home due to this infection.
Thank you for the info.
I will try to find the facility you are talking about.
Thank you so much!
sharon_50145 mary_ann_0313
Posted
mary ann, I'm in Seattle wa, area. I go to Dr Richard Wall at Valley hospital , UW, in Renton Wa. He helped to save my life. Got me on the proper medications, treatments etc. I wish you all the best.
carole74618 sharon_50145
Posted
I have found all these posts 4 Pseudo are in the US. I live in the UK. Wish I could get one of those Aflo vests or similar.
bronchi0810 carole74618
Posted
i feel completely the same I am in the UK too!
They will not even give me a normal vest let alone an afflo one. MY physio tried to tell me they are too expensive and not effective in bronchiectasis patients. I tried to tell him it is trial and error really. either way I will have to pay for one myself and an afflovest is 10k.
mary_ann_0313 Guest
Posted
Before I was given the okay to get a VEST from my health provider through Medicare, I had been looking around for a used one. Before I knew about Pseudomonas and was infected, I found more than one VEST online and in my area. I called the company who makes them for info on helping me get it suited for me and sterilized. There was no help from them available and I understand their reasoning....no money to make on used ones and they can't determine settings for anyone without a doctor. You need to know what your doctor would recommend for you. My VEST cost Medicare (U.S. health program over 65 yrs old coverage paid by taxes we pay while working) over $12,000. I pay $136 a month. Knowing what I know now, I was better off not buying a used one because I may have thought I got PA from the used unit.
sharon_50145 mary_ann_0313
Posted
Mary ann, it is important to keep your vest clean for sure. I wipe mine down with bleach wipes everytime I use it. inside and out.
Carol and Bronchi, I truly hope you can get access to one. As I said before, it really improved my quality of life a long with the inhaled Cayston antibiotics. My chest used to be full of mucous all the time. I was so embarrassed to go anywhere because I was always couging up stuff. Not anymore! I can feel my lungs now when they need to be cleared. Which is always in the evening. I just use the vest and it does the trick! I wish you both all the best.
bronchi0810 sharon_50145
Posted
hey sharon!
do you recommend a particular vest, ie afflovest or hilcom? I am thinking whether to put down 10k which is ridiclous on the afflovest or will the hillrom one for 4K be suffice?
thank you
sharon_50145 bronchi0810
Posted
Bronchi, I'm not familiar with any other styles other than Aflo. If the two seem similar, then I'd go with what I could afford. I'd also mention it to your doctor or whoevers care your under. My Orthopedic Drs seem concerned about me using one because I also have a degenerative bone disease w/osteo. I choose to use it regardless because it keeps this crud pushed out of my lungs. Also, I drink %100 pineapple juice constantly. It has an enzyme in it called bromelain that helps with pain, lungs and helps fight off infection. I swear it works for me! I also suffer from chronic pain due to bone disease. Please feel free to email me: I'm also on Facebook under Sharon Smith Fox.
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