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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sharon_50145 Guest
Posted
mary_ann_0313 Guest
Posted
Did you know that you get paid to do a
clinical trial?
pinksnugsy Guest
Posted
Hi there
I had pseudamonus for about 10 years unable to get rid of it. I tried several different combinations of anti biotics through IV's and none seem to work then 2 years ago after me begging for increased doses of anti biotics through IV's my chest consultant put me on 4 grams of Tazocin 3 times a day coupled with 1 gram of meropenum 3 times a day for 14 days and it wiped the pseudamonus out. Since then pseudamonus hasn't shown up in my sputum which for me is nothing short of a miracle! I'm not sure if any of you have had these drugs but hopefully it will give you hope that you can get rid of it.
Best wishes
Rachel
bronchi0810 pinksnugsy
Posted
hey there,
are they antibiotics adminstered via IV, i have never had them before?
how long have you been pseudomonas free and if you dont mind me asking, do you have any lung conditions?
thank you!
pinksnugsy Guest
Posted
Hi there
I have had bronchiectasis since I was a child I am now 50 years old. I have a portacath so I administer my own ivs when I'm poorly. Yes these anti biotics are via IV's as I stated in my comment. I had pseudamonus for about 10/11 years (I thought I stated that in my comments also). I have tried many combinations of IV anti biotics but the drugs I mentioned are the ones that finally got rid of it and I have been clear of pseudamonus for around 2 years. I still have frequent infections but they are just general bugs. I'm very lucky I have a fantastic consultant here in the UK.
Hope this helps
Rachel
bronchi0810 pinksnugsy
Posted
thats great to here! I am Uk based also, in birmingham, which hospital are you under?
I looked up those drugs for pseudomonas, and they are very strong drugs usually used for infection of the blood! Do you still take the Ivs to prevent the pseudomonas coming back? I Wonder if my consultant will adminster these drugs or not, she will probably go on her recommendation.
thank you!
pinksnugsy Guest
Posted
Hi
I'm actually looked after by 2 hospitals. The main one is Papworth hospital in Cambridgeshire this is one of the worlds best chest hospitals. They do things very differently to main stream hospitals. I was referred there by my own hospital about 12 years ago when I was so ill and unable to get well. After a week at Papworth my life changed completely and it gave me hopr that I could control bronchiectasis. My local hospital is St woolas in NEWPORT gwent. My local hospital are guided by Papworth hospital. The other hospital I used to attend is Brompton hospital in london that to is another great place for chest diseases. I've tried to attach photos of the anti biotics as I always got spare at home just in case I need them but it says the file is too big to attach.
I Only do 14 days on these drugs as and when needed. Also I used to nebulize meropenum twice a day but my body built up an immunity to all nebulized anti biotics so now I just take mucodyne everyday plus Fostair inhaler. When I have a build up of mucus I also nebulise hypertonic saline.
Hope this info helps
Rachel
bronchi0810 pinksnugsy
Posted
aww do not worry about the photos! Wow, how did you get a referral, is that something i need to ask for? Also you said they changed your life in a week, how did they do that? I would love to get a referral there but i dont know if they will do it?
Thank you!
pinksnugsy bronchi0810
Posted
Because my own local hospital was unable to get me well my consultatant referred me to papworth as I was at my wits end. The drugs they prescribe you in a specialist hospital is not like your ordinary drugs. They treat bronchiectasis patients the same as cystic fibrosis patients as we have very similar symtoms/problems. I've no idea if you can get a referral but if you are constantly poorly and unable to get infection free then tell them what I am treated with and hopefully you can get better treatment. I'm lucky as Papworth have taught me so much and I'm now able to do my own ivs at home so I don't have to go into hospital when I'm poorly
i just wish everyone has access to what I have glad access to.
xx
mary_ann_0313 Guest
Posted
Have you had any kidney issues with the IV's or the saline?
pinksnugsy mary_ann_0313
Posted
Hi.there
No I've had no issues with anything
best wishes
rachel
sharon_50145 Guest
Posted
Bronchiectasis patient here. contracted psuedomonas a few years ago. Had a endoscopy done a couple years ago now Im colonized with stenotrophomonas maltophilia. Was hospitalized a couple years ago in outpatient with picc line getting 1 gr of cefepime twice a day. I was placed on 75mg vials of inhaled antibiotics called CAYSTON, 1 - 3x a day for 28 days then off for 28 and back on. This has really helped to improve my quality of life by a long shot. I also use vibrating vest to keep things loosened up twice a day with flutter valve along with three breathing treatments a day of duo neb or plain albuterol. These treatments have kept me out of the hospital. When i did my last pulmonary test, it hadnt worsened but slowed down damage to my lungs from two years ago! inhaled antibiotics is the way to go here. I'm allergic to most sulpha drugs so i'm limited with antibiotics. There are only two inhaled antibiotics that treat psuedomonas that i know of, Tobramycin and Aztreonam ( Cayston) I'm in the U.S and under the care of a Pulmonologist.
bronchi0810 sharon_50145
Posted
hey there, do you still have the superbug?
do you find the flutter or vest more helpful?
thanks
sharon_50145 bronchi0810
Posted
I still have the super bug. The vest is EXTREMLY helpful. I use the flutter valve while I'm using the vest. I don't know what I'd do without my vest. I've got the AFLO vest but there's also a MONARCH as well.
The vest in my opinion, is way more helpful than the flutter valve.
bronchi0810 sharon_50145
Posted
hey sharon,
I live in the Uk and the vest isnt widely given to patients and the aflo vest i heard amazing things about, but they are like 15,000 dollars, and hospitals in Uk do not supply them. I may be able to get mt hands on the normal conventional vest, does this work just as good?
thank you!
sharon_50145 bronchi0810
Posted
I'm really sorry you're having a hard time getting one. Here in the US, our insurance will pay for all the cost except %20. I'm not familiar with any other vest other than the Aflo, so I couldn't compare. I'm sorry.
The Aflo is very convienant. You can move around in it. As well as lie in different positions to loosen mucous. Some days I barely have any mucous at all, thanks to the vest.
If you can get access to another type of vibrating vest, it would be better to have what you can get than none at all. The vest keeps mucous moving so it doesn't sit in one place. As well as help you cough it up.
Try looking on the web at different sites to see if you can locate one. Good luck to you! and i wish you all the best.
Sharon
bronchi0810 sharon_50145
Posted
hey sharon,
I saw my consultant last week and she said my chest sounds bad with loads of mucus stuck and I told her i had done my physio, I use an aerobika or aerosure. In the past i have used a flutter and acapella. I feel this devices do not help that much as still after i have ridiclous amounts of mucus. I will try and get hold of a vest.
sharon_50145 bronchi0810
Posted
If your therapist can help you locate a vest, it would do wonders for you. I used to cough up tons of mucous before i got my vest, now i hardly cough up anything. It sure makes a world of differnce.
bronchi0810 sharon_50145
Posted
have you used any of the other devices before, pep mask, flutter etc and how did you find then? I found them rubbish! thank you im going to do everything to get my hand held on one.
sharon_50145 bronchi0810
Posted
The flutter valve I have and as you say, rubbish it is. especially if you use it alone. Its helpful to use along with the vest.