Bronchiectasis and struggling! - British Lung Foun...

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Bronchiectasis and struggling!

OTTERfun70
OTTERfun70
19 Replies

I'm very new here! I'm at home right now with pseudomonas and on Cipro....no side effects, yet. I have bronchiectasis but have been pretty well for a few years...lots of mucus...but no real infections. This year has been awful...this is my 3rd lot of ant since November ...and it's making me a bit concerned. I'd be grateful for any advice.

19 Replies
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poemsgalore1

How long have you been on Cipro this time, Were you given it by your GP or your consultant? I can't take it as it gives me Tendonitis. I usually have 2 weeks in hospital on Tazocin (an IV anti biotic.

OTTERfun70

This is my first time with pseudomonas and my first time on Cipro...and I don't have a consultant. So it's all new to me. Yes, I've had frequent chest infections since 1988....as that's when the bronchiectasis started (although I've only known about it for about 10 years, max). In 1988 I had a piece of lung removed as I had been coughing up blood for 6 months...and they discovered I have a congenitally deformed lung. My GP has been liaising with the respitory team re this episode...should I be referred? How do I know when the pseudomonas has cleared? I'm not coughing lots now!

RoadRunner44

Hi Poems, as I have a form of tendonitis in my right shoulder could you tell me a bit more about this. I find the link to bronchiectasis rather strange but so many sufferers have it on this forum. Do you know why there is this link ? Chrys

poemsgalore1

The link isn't to Bronchiectasis Chrys, it the anti biotic Ciprofoxacin which some people are given when they have an exacerbation. Not everyone is affected.

RoadRunner44

Thanks poems . If you come off cipro, will the tendonitis go too? I'm not on any medication for bronchiectasis for the moment. As you may know, I was lost in the system while on colomycin. The consultant finds it interesting that I have a number of possible side effects for being on it for too long without a break. As I am also prediabetic the itchyness of my skin and neuropathy are linked to one or the other. Reading about tendonitis has made me think that may also be linked in some way. I'm so glad to belong to this forum. It appears at times, there's much more help here than even the specialists seem to be able to give.

poemsgalore1

Mine did thank goodness.

cofdrop-UK

Hi OTTER and a very warm welcome, although I am sorry to hear you are struggling. As you have had 3 exacebations since November with pseudo and the Cipro hasn’t helped for very long before becoming infected again, you might want to contact you consultant and explain and ask for your appointment to be expedited. I also hope your respiratory consutant has a special interest in cf/non cf bronchiectasis (it makes a difference).

Like Poems I get tendonitis with Cipro but pleased for you you do not experience side effects.

I wonder if your consultant has ever discussed nebulised antibiotics (not to be used as a treatment but prophilactically) to help keep the pseudo numbers down. Unfortunately I cannot tolerate these either but many people find them very beneficial. I am a lifelong bronch and am colonised with pseudo, which makes options other than IVs difficult. I too have been battling exacerbations and have been doing my own IVs with abs licenced for home use since Nov, so I empathise with you.

I am pleased that you have had a relatively good infection free run and it must hit hard now and the cipro not seeming to be doing the trick at present.

I do hope you get an appointment soon so all options open to you can be discussed.

Love cx

OTTERfun70

Thank you for all this info....so new to me!

RoadRunner44

Just a quick post. Do you send in samples of sputum regularly? This will help your doctor or consultant to work out what's going on in your lungs.

OTTERfun70

I have only ever given a sample of sputum once...just before Christmas. What happens if you can't cough anything up....my cough has stopped but, it seems, I have pseudomonas from the Christmas sputum test.

RoadRunner44

Hello Otter, I have bronchiectasis and regularly coughed up green sputum. Since I have nebulized colomycin antibiotic for a very long time my cough has lessened and I'm going through ,what is called a dry patch. Still have a cough but no or little sputum. This can be normal with regard to some sufferers. However, things can change.

I have Pseudomonas too. Medication doesn't always kill them off but suppress them from growing. My sputum hasn't shown them growing for a long time now. They can hide, so as to speak, and cleverly avoid being spotted, but are still lurking somewhere. However, as I had got lost in the system for over a year they eventually realized I had been on colomycin non stop for too long and recently had to stop nebulizing it. At the moment I am on no medication for the bronchiectasis and will give regular samples of sputum and see my consultant in three months time. She will reassess my situation then and will probably put me back on some medication when she finds what bacteria is present in my lungs.

I really hope your doctor arranges for you to see a consultant soon as you should be under specialised care.. Once you are under care everything will be managed properly and questions answered..

If you have any other questions I know there are many very knowledgeable people on this forum who will be more than happy to help. Cheers for now. Chrys

OTTERfun70

Thank you....this site, and you, are so helpful. X

OTTERfun70

Hi RoadRunner....just a quick update! My Cipro finishes today, I have a very light dry cough, occasionally, and not so much mucus now. I have been on Carbocisteine for just over 2 years. Can I just ask about the pseudomonas.....how will I know whether it's gone? Will I have to wait until my mucus increases again, then do a sputum test? Also, can I swim? The doctor (by phone) has said that I can go back to normal as long as I'm not coughing. I'm so worried about this, as I do bank work at a school for students with disabilities....and I'm also scared I can spread the bacteria, when I swim! I just didn't realise how serious bronchiectasis can be...I've just carried on managing it over the years, not realising that I was prone to other things. I have a spa day booked for a friend's 60th, but realise that I shouldn't use the spa, jacuzzi or steam room....but would like to swim! It's my thing! Sorry...this sounds so trivial compared to others here.

I have never been referred to a consultant or a respiratory team. Thank you.

RoadRunner44

Hi Otter, I've made a mistake and sent a reply to myself instead of you. If you scroll down you will get my answer. Let me know how you get on with your doctor. Chrys

RoadRunner44

Hi, Firstly. I am amazed that you are not under the care of a consultant. That must be rectified at once. , I would request a sputum sample pot from your doctor and also ask for a referral to a consultant. Your doctor will fill in a paper asking the analyst to look for specific bacteria like psuedemonas. You may have a dry patch regarding bringing up phlegm but do the huffing method of expelling some to add to the pot. Return to your doctor to find out the result. In the meantime he Or she will have requested an appointment for you to see a consultant.

Have you ever been given what is called a Rescue Pack? This is a broad spectrum antibiotic such as Amoxicillin which you keep at home in the event of an exacerbation (really bad chest infection) to use in an emergency. I have a sputum chart which my respiratory nurse gave me. It shows sputum colours from palest yellow white through to dark green and Brown. It helps you recognize by the colour of your current sputum how well you are.

As for the Pseudos. As I mentioned earlier, they are very difficult to kill off permanently and generally lurk. At the moment I haven't grown any but I am due to see my consultant who will have the latest results for me when I see her next.l They are clever and sometimes avoid being spotted in the sputum. Hence the importance of being under specialist care. If your recent sputum test showed pseudos. Surely you should be taking the appropriate antibiotics. As you seem to know this what did your doctor say about your situation? This is a perfect opportunity for you to ask to see a specialist.

cofdrop-UK

Please check out post for Willanna a few post up as it has a link you may find useful.

Cx

cofdrop-UK

Think it best if you have the link on your own thread

europeanlunginfo.org/bronch...

Totally agree with RoadRunner that you should be under the care of a respiratory consutant who has a special interest in cf/non cf bronchiectasis. You might want to look on the internet at a hospital within a city close to you you have access to. Check out the consutant you want to see and ask your GP to refer you, or contact consutats secretary explaining you understand s/he has a special interest in your condition and would they accept you as a patient. Then make sure your GP refers you. Can’t believe your GP is just liasing with a respiratory team and you have been basically left to your own devices for 8 years. You deserve better. If you have difficulty finding a consultant, let us know as someone might be able to help you.

My GPs used to treat me but I have always had a respiratory consultant of varying degrees. I have a brilliant team now and as I am so intolerant to Cipro and the nebulised abs used for treating or keeping the numbers of pseudo down to an acceptable level, if the problem is pseudo then they ask me, or I will in any event contact the hospital bronch team.

Good luck

Cx

OTTERfun70

Thank you so much.

Izb1

Hi Otterfun70 and welcome to the site, you will find plenty of us with bronchiectasis and lots of good advice, look up bronchiectasis and have a look through previous posts you will find loads of info x

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