Bronchiectasis, Haemoptysis and infections

[Yess1e]

Hi lovely people, I wondered if any of you might have some info/input with regards to my situation, as the consultants can be blasé or not that helpful sometimes.

*I have bronchiectasis and I get haemoptysis doing anything like heavy lifting, swimming, heavy crying (my Mum just died), no chance of sexual arousal without coughing up blood. Does anyone else have this?

*Has anyone had an embolisation and was it helpful, how was the process?

*I have burkholderia and haemophilus infections at the moment. I had been feeling unwell and had awful chest pain in breathing in, this has eased and now I have bloody sputum since my last bleed on Monday and the doctor suggests either leaving it or taking Ciprofloxacin. I'd heard this had been shelved unless an emergency use due to the side effects? Or should I take a 10 day course?

*I could try Co-Amoxyclav, but this doesn't seem to kill any infections I have, are there any other antibiotics that have worked for you and not caused significant side effects? I react to Doxycycline - which is so frustrating as the 4 days I managed it killed off lots of bacteria.

*Shall I just leave the bacteria now they're not causing me too many issues?

I wish the specialist consultants were more reassuring, he said he had no idea what antibiotic for me to take if I didn't want Cipro'.

Sorry for all the questions, I thought best to get them all down and see what you think.

Thank you so much, in advance.

XX

[Tinker26]

I cultured haemophilus for over 2 years and reacted awfully to ciproflaxin and was given iv drugs to clear and that was over 5 years ago .

[Yess1e in reply to Tinker26]

Thank you for replying Tinker26, Ah so it cleared it and you've been free for 3 years? I wonder if they'd give me IV. No response from the team at hospital yet.

[ScottieAl]

Hi Yess1e,

Is your consultant a bronchiectasis specialist? If not ,consider asking to be referred to someone more specialized in the field as being followed by a the right doctor can do lot of difference. I have had bloody sputum as well in the past and despite not feeling too bad it was a clear sign of some degree of bacterial infection, for this reason I was given antibiotic. Have you ever sent out a sputum sample to the lab so that they can check any bacterial growth and suggest the right antibiotics to treat the infection? This can normally done via GP or via hospital if requested by the consultant.

In some other occasion I had blood streaked sputum caused by heavy lifting/strong coughing but that settled quickly. If you keep seeing blood you should seek guidance to have the correct antibiotics prescribed, a specialist should be able to give you recommendations. My understanding is that ciprofloxacin is often given when they suspect pseudomonas aeruginosa infection ( I am colonized with this bacteria) and therefore you need to have a 14 days course, if this specific antibiotics is giving you problem then they should recommend something else. In my case, whenever I get a flare up (I am on nebulized colomycin daily) I have to take ciprofloxacin for 14 days, if that is not working then the only available route is the IV antibiotics, unfortunately there are not many alternative available for this bug.

Having bronchiectasis can be quite daunting as we experience daily symptoms (e.g. cough, sputum production, tiredness etc..) so the main thing is to get the right support from your doctor, have a plan - are you on carbocisteine (mucolytics)? do you do any chest clearance? do you have a rescue pack of antibiotics/steroids at home?

Have you spoken to the GP about being referred somewhere else? You can do some research online and see what consultants might be suitable for your case and try that route as well

Hope it helps.

[Yess1e in reply to ScottieAl]

Hi ScottieAI, thank you so much for your reply.

Bronchiectasis is daunting and I'd I'm finding it frustrating and upsetting at times. I'm with a specialist team and ironically one of my Dr's seems to be 'the' doctor when you google. I'm not finding them very helpful to be honest. The one Dr that is, was on leave so I spoke to a registrar. He had no other suggestions other than Ciprofloxacin, he said I could try Co-Amoxiclav but it would be unlikely to work, I'd already said that to him myself.

My lung bleeds can be scary and this last one was from lugging a mattress up a few stairs.

I've had a culture done and it showed Burkolderia and Haemophilus. I don't have the full names as the Dr wasn't that forthcoming. I'd asked again as I wanted to write them down.

I do airway clearance daily and use a Qvar steroid inhaler.

I would take Doxycycline but it gives me severe daily migraines so the most I achieved was 4 days, pos 5.

I really don't know what else to do. I did leave them a message saying wasn't there any other antibiotic to try or could microbiology suggest something. I react to so many things it's really frustrating.

Have you had any issues with Ciprofloxacin?

[ScottieAl in reply to Yess1e]

Hi Yess1e,

sorry for the delayed response.

In all honesty they should give you an alternative, they can't just let you sit there with an active chest infection, especially if you are bringing up blood? I totally feel for you, it can be really scary when you see blood.

Have you tried to raise this concern with your GP and maybe sought a second opinion from another consultant? It's all within our rights to find what we think is best for our health. I have had infection caused by Haemophilus influenzae in the past which cleared with the right antibiotics (can't remember which one, sorry), never heard of Burkolderia. I think there is also a vaccine available for one of the Haemophilus bug, it was recommended by my consultant. Maybe something worth asking?

Sorry you are having issues with those antibiotics. When I have a flare up and feel worse I need to send a sputum out to the lab and then start my rescue pack of ciprofloxacin while waiting for the results - if I feel it's needed. Luckily so far the cipro has not been too bad, apart from a bad acid reflux which I had to live with.

[Yess1e in reply to ScottieAl]

Thank you for replying, that's so kind of you. My GP wouldn't have a clue and I'm attending the main hospital in the country for Heart & Lungs, but the Drs vary greatly! I did the sputum and they found the two bacteria. I will ask another time about vaccination. I'll be due a pnemovax at some point. My concern is Ciprofloxacin as I tend to react to so much and it says things can happen months later, scary to me.

I'm not knocking your thoughts and suggestions as they all make sense, and I'm so grateful for your reply. X