Hi Thanks to all the wonderful people on this forum and a GP who was prepared to listen, I have now found out that I have pseudomonas in my lungs as I insisted that he send a sputum sample for the 5 day culture instead of the normal 3 day culture. I finished a 7 day course of Ciprofloxacin a week ago and I am worried that I am not quite clear of infection. This is my sixth course of antibiotics in seven months. The other five were for 14 days - should Ciprofloxacin be taken for 14 days or 7? Also, does this mean that I will always have pseudomonas in my lungs and am I infectious? I want to go and see my nieces gorgeous baby who has just come home from a special care baby unit after surgery.
The nice GP has also referred me to the QE in Birmingham to see a consultant as I haven’t seen anyone since I was diagnosed over a year ago. The appointment is in July but at least I will be seeing someone who understands my condition. He also referred me for a pulmonary rehab course but I haven’t heard about this yet.
I also signed up for some drugs trials in a hospital in North Manchester- they are also carrying these out in Dundee and a town on the south coast - I think maybe Southampton?? I have been contacted by a nurse to take a basic medical history and they are going to let me know. It means 10 trips to the hospital over the course of a few months and they will give some of the group meds and some placebos.
I wouldn’t know about any of the things to ask my GP without the help of all of the wonderful people on this forum.
Sorry this post is so long and rambling!!
Pat x x x
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Patf1
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So good to hear that you are going to Bham for your consultant. Hopefully it will be mine who is a true expert in her field.
Yes cipro should always be given for 14 days. The consultant may decide that you need some IV to lower the pseudomonas numbers so that you can get back on track and also may decide to start you on nebulised antibiotic to keep the numbers down.
Once it is in there pseudo tends to lurk, even if not showing up on a lab plate.
And NO you are not infectious to other people. I have been colonised with pseudo since 1986. I have NEVER infected anybody, not my partners, my children, my five grandchildren - anybody!
The biggest danger is the viruses that they can donate to you.
Some cystic fibrosis patients have been found to pass a rare strain of pseudo between themselves and from this has grown an ignorant presumption that we non cfs can infect healthy people and each other. My con says that it is just not so. In fact some research in Europe this year proved that we cannot.
I don’t think that I would be tempted to travel all the way to those other hospitals to do a trial when I might be on the placebo and never see the drug come to the market! I have done loads of drug trials based at my unit in Bham including inhaled cipro ten years ago. This drug obviously worked in us but the FDA still refuses to licence it. One drug made non cfs trialling it very ill ( luckily I was on the placebo, saline) and is now standard for cf. Lots just disappeared into the ether. I hate to be a grouch about this but I have been at this game for a very long time and you do have to ask why they are having to recruit from outside their area when every big centre is packed with non cf bronchs who could take part. Your motivation is very laudable but have a big think before you put yourself to all of that trouble. There is a saline/carbocysteine trial being recruited at the QE right now. Although many of us use carbo and saline there has never been a proper trial and so you might find this useful to you in treatment terms and more convenient to attend. Your consultant will talk to you about it if you ask.
Anyway good luck. You should be well looked after now. And a rare pat on the back for your GP!
I think it might well be the same consultant as she is female- I looked up all of the pulmonary consultants at the QE and she is the only one where it says she has a particular interest in bronchiectasis. I know we are not supposed to name doctors on here but I think it must be the same lady.
I will see how I feel after the weekend and maybe go back to the GP for a 14 day course and to add it as my rescue pack to my prescription. I do feel the best I have done for months with just the 7 day course.
That’s good to know about the infectious part of this disease and that I can now visit the baby!!
I live in Staffordshire and the Manchester hospital is 60 miles away and to be fair to the hospital they did question me about the distance I would be travelling. I did just want to do something to help with the research into bronchiectasis as there seems to have been very little progress over many years. But they might not take me on as I have a heart problem too - I’ll maybe see what they have to say when they call me back. It sounds like you’ve done your fair share for your fellow sufferers! I don’t really like that word “sufferers” but couldn’t think of a more positive alternative!!
Maybe I will be asked to go on the trial at the QE which as you say would be a bit handier for me.
For anyone else struggling to get the right treatment from your GP - I trawled the posts on here for advice and made a list which I went through with my GP and finally I am making progress and starting to feel almost well again. The one thing I forgot to ask about was physio but I will bring that up with the consultant when I see her in July.
Yes she is co chairman of the committee which wrote the latest guidelines for the treatment of bronch. The other is a prof at the Brompton. The QE is a leader in bronch research but little known about because they don’t blow their own trumpet. My previous consultant
( retired from seeing patients now but still doing research there) taught the US that bronch is a condition in its own right not just cystic lungs. He taught my consultant. I have known the head of the research labs since she was a PhD student more years ago than she and I care to think. A fabulous lady!
Bronch has always been and still is being woefully ignored. Governments pour money into cf and copd but we are left to get on with it using the crumbs from the table. This came about years and years ago because it was believed that it was a rare condition found mostly in old people after multiple infections. Children mostly used to die of it in my day if they had it as extensively as me. There are a few of us on here Who defied the odds!
Now that it is finally beginning to be diagnosed properly it appears to be a mostly unrecognised global epidemic. Particularly in the Eastern world. Lots of talking going on but very little actual action!
I get catatonic when people call me a ‘sufferer’. It is an awful label. I have ‘lived with’ my bronchiectasis for 66 years since I was diagnosed at 3 and if I had gone through life seeing myself as a sufferer, a victim, I would never have done the incredible things that I have.
Cipro is the only ab which is truly effective against pseudo orally although some people take doxy when they can’t tolerate cipro. If you found 7 days helpful that is a good sign so I would go back and get the rest of the 14 days.
Your GP is going to have to learn the difference between the treatment of copd patients and bronchs. Hopefully your con will write to them (copy to you) to inform them of the ongoing plan. My GPs readily admit that I know more than they do about my condition but they are very cooperative with my con which is very important.
Bronch really drains your energy . If I was you I really wouldn’t waste it travelling to ‘do your bit’. Let them know that you are up for trials at the QE and if you fit the profile they will include you for things that coming up. A prof at the university is about to start a trial for antibody repkacement in non cfs with pseudo and I am on the list for that. A very different approach.
I had developed AF and dilated cardiomyopathy by 2012. It is controlled with drugs and I am just a bit more breathless if hurrying up hill.
I can't emphasize enough, LP, how much I agree with you re the term 'sufferer'. I cannot imagine how I would have lived since dx if I called myself that. I feel it robs people of a sense of agency. The term 'living with' gained currency during the 80s when so many developed HIV/AIDS, a lot of whom were pretty militant about their right to healthcare and because it was unknown, they did most of the research themselves. Definitely not sufferers but activists.
I remember making our local newspaper print a correction when I took part in a BLF charity event and under my photo they described me as ‘bronchiectasis sufferer’. How dare they label us. It immediately weakens us in others’ perception and as you say, robs us of any personal agency.
Just to say that I never want to be and am never going to be a sufferer. I totally agree with your comments. I was just stuck for a collective noun for us and wondering if anyone had any suggestions?
It seems like I have picked the right place to go for a consult then!
I had been on doxy before this last spell of infections and it had worked but not in this last 6/7 months. I was fine with 7 days of Cipro do hopefully will also be ok with 14 days. I will phone the surgery to ask for the 14 days.
Thanks again for the advice regarding the trials - I will probably drop out of the Manchester one and volunteer for any in Birmingham. And also the advice about the physio as I was unsure what route I needed to go to get help.
I have primary dilated cardiomyopathy too and was in heart failure but back out of it for about a year now thanks to a good cardiologist (also at the QE ) and meds.
I do not like being called a ‘sufferer’ either. I have congenital heart disease as well as bronchiectasis, which came later. When I had the surgery for chd in 1961 at 17, there was hardly any follow up, so I just carried on with life, married, went and worked overseas in a remote part of the world for ten years, had 2 children , would have liked more but my obstetrician felt that his grey hair couldn’t cope with more! My GPs have basically been helpful, except for one who practically called me a liar, so I changed. The first time I saw my new GP the first thing he said was ‘ I don’t know anything about your condition, but I will find out’. Music to my ears! Now I am established with my current GP I am getting the same attitude. We live on the English/Welsh border, so although I have a Welsh GP I am treated in Bristol by a bronchiectasis expert. He is so good and helpful, as well as kind, makes all the difference. However I am in the Welsh system for respiratory care which is excellent. After a rather rocky start the nurse I see is very good. I am on ambulatory oxygen now and always being told how well I manage it, but to me I just bung it on and go out! So no, I am not a sufferer, just a walking medical mystery. So carry on littlepom and keep us carrying on too. All the best xxx
That is such a good story. We really do achieve things for ourselves by positivity and tenacity. I am so pleased that berween the different medics you are getting the support that you need. And I suspect, keeping them on the right track with your own knowledge. Big hugs. I need them this morning!
Thank you. It hasn’t been an entirely easy journey, but I am not giving up yet. I am lucky enough to have a supportive husband, Peter by name, rock by nature xx
You will probanly see her physio when you go to clinic. They are very helpful.
Just to say about the baby. If I was the Mum of a sick baby who had just had surgery I wouldn’t want ANYBODY kissing it. If I was visiting I would not get intimately close so that if some virus spreader does give the dear little one something nobody could blame me! We have to take into account other people’s prejudices and lack of knowledge.
Great news Pat. I hope things go well for you at QE.
Personally I wouldn’t go too near a new baby who has had surgery, just in case I was brewing something. Anyone can brew a virus but if you’re known to be chesty the finger will be pointed. Also I think it’s right by the baby.
Onwards and upwards for you and it’s pretty much down to you.
The more that I have been thinking about it, I may just wait a while to make sure this last infection ( or one long ongoing one since August 18) is clear) before I visit.
If I have understood littlepom’s advice correctly I should be ok as long as I haven’t got a current infection?
Even if it’s just a simple cold then I should stay away until he is stronger.
Just to let you know that after an initial phone call and providing some medical information I haven’t heard back from the Manchester medical trials so I assume that I’m not suitable.
Hi, you sound like me, mild Bronch but getting infections all the time, each time I go to my doctor and he give me antibiotics and Prednisolone I had them 8 times last year. Hospital says this is far to much but didn't suggest anything else. Just finished Pulmonary rehab which was quite helpful.
We do sound similar- it’s no fun having infection after infection. I am now on another course of Ciprofloxacin which is the seventh course of antibiotics in eight months but at least I am taking the correct ones now.
Are you seeing a consultant who specialises in bronchiectasis? If not, maybe ask your gp to refer you to one. I was at my wits end with feeling so ill all of the time so I took advice from this wonderful forum and went to my gp with all of the info that I had gathered.
I had my first appointment at the QE in Birmingham last week and they were so thorough. They are reviewing my diagnostic CT scan, ran more blood tests and I am getting two appointments in the post - one for pulmonary physio and the other for lung function tests. And then back to see the consultant. So all very positive so far. I also have an assessment in May for pulmonary rehab locally.
I hope that you get some help too - you must be exhausted with all of the infections you are having.
I have come to the conclusion that each time I am ill I don't have a chest infection, keep saying this when I go doctors but they say'bit crackle in there take the antibiotics and pred '
After speaking to the pulmonary rehab team they said try just taking the Prednisolone and the last twice I have done that and it's cleared up without the antibiotics. I know I have definitely had chest infection last May and this January but the other times it's just the exaberations, don't feel ill as such, just a bit breathless, cough and rattle. It's the rattle that gets me down just can't cough anything up.
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Bronchiectasis.. pseudomonas and Candida🙄
Recurrent chest infections.
Advice requested on Pseudomonas / Bronchiectasis 
