Treatment options for bronchiectasis

[Blue58]

If you are unable to tolerate oral antibiotics as some of us are, just wondering if any other sufferers have regular iv antibiotic care treatment in hospital to keep on top of infections. Can't have treatment at home due to severity of other conditions. Used to be called 3 monthly clean ups but now being told that's old hat. If only I could get that message across to these damn infections which are getting worse without the regular clean ups. Never felt so ill in my life since they stopped the treatment that actually worked so well.

[Hidden]

You can have long term nebulised antibiotics or IV at home on an as needed basis. Best discussed with a good bronch specialist. I am currently on 2 week course of IV ceftazidime paired with nebulised colistin and it is working like magic.

[Blue58 in reply to Hidden]

I've tried the nebulised antibiotics but the consultant I was under at the time who was a bronch specialist stopped them as I couldn't tolerate them and he also said that oral antibiotics weren't effective. He devised a plan in which I received iv antibiotic treatment every 3 months known as a clean up which at the time he said was the recommended treatment. This worked very well even though I had to go in to hospital every three months for a 14 day course. I also have severe asthma and he said I should never be considered for iv antibiotic treatment at home. I'm now told by another bronch specialist this is old hat and the idea now is to keep people out of hospital. Consequently my health has definitely deteriorated since this change of plan. Now I have to wait until I am seriously poorly and have a raging infection that shows in my blood before I receive antibiotic treatment. Without these 3 monthly admissions the infections are getting worse and actually I'm finding myself in hospital more often than ever I was before. I think it's a false economy. Just wondered if there were others out there like me who had a 3 monthly inpatient iv antibiotic plan that has now been told it's old hat. I was under the impression that regular antibiotic treatment was key in the treatment of bronchiectasis.

[Hidden in reply to Blue58]

It is old hat but IV should be given on a when needed basis ans it us mostly possible to do it yourself at home. I am in hosp at present following a disaster having a pacemaker fitted and nearly dying. I am having IV ab to protect my chest and will be taking it home on mon. I'm sorry I can't engage in a long discussion right now. I am exhausted. I hope that yoy find a way through.

[Digger0 in reply to Hidden]

Sorry to hear this Littlepom. Take care of yourself and get plenty of rest.

[Blue58 in reply to Hidden]

Thank you Littlepom. You always seem to give out good advice. Sorry to hear you are in hospital, hope you get better soon. I'm also in hospital with another raging infection. I just get infuriated when everything seems to relate to blood tests especially as my GP told me that there is a time lag between developing an infection and it showing in your bloods and if nothing is showing in your bloods it should never be assumed there isn't an infection brewing but in my experience that is exactly the case especially when you have to deal with so many junior doctors today as opposed to consultants. Lost count the amount of times I've been discharged on the strength of a blood test only to find myself back in hospital within a few days. Nearly lost my life through it once but I guess we just have to keep on fighting.

[Jk1957 in reply to Hidden]

Littlepom . So sorry to hear you not well . I follow your posts all the time & you are always so generous with your time in giving us all so much information . I really appreciate it & hope you are better soon

[cofdrop-UK]

Hi Blue, I totally empathise with you.

I have had bronch all my life and now have asthma and other health issues. There are now only 2 oral abs I can tolerate and only one os them is marginally useful for pseudomonas, which I am colonised with.

I cannot tolerate prophylactic meds, either oral or nebulised, in fact Nebbed Colomycin put me in hospital.

I have done home IVs for some time and now have a port. I won’t use the expression OH as it is paternalistic and offensive and frustrating. They used it for postural draining with percussion too. It sounds clever, especially as they had us doing it for years, and I am a believer in doing what works for you.

We are in a similar position in that, although it is not a preferred method of treatment nowadays, the olan for me too was a 3 month tune up, although in reality it doesn’t work as rigid as that. Like you I ended up in hospital last time for IVs because of other health issues.

I absolutely feel your pain and frustration. Huge problem with bacterial resistance to abs generally but It is tremendously frustrating and scary when you have managed bronch all your life and now feel your options are reduced. It seems though that as you say they are still using abs frequently and in high doses but at a time when your exacerbations have you in a worse condition. Again I feel for you and hope you can come up with a plan with your clinicians.

Love and hugs cx

[Blue58 in reply to cofdrop-UK]

I don't understand why they try to fix what isn't broken. If it works for you then it works for you. I just feel like they are trying to put everyone in the same basket and all I ever hear is "the idea is to keep people out of hospital" but when you have a colony of psuedomonas and severe asthma that is very difficult to control once the antibiotics start to stir everything up in your chest, things can change very quickly for me, hence why I was told that antibiotics at home should never be considered an option. I'm sure you will understand that not being able to breath is a very scary thing and in my case that can change within minutes. I've had several respiratory arrests and been in intensive care due to the severity of my asthma alone.

[Patk1 in reply to Blue58]

I think u need to be firm,maybe compile bullet point list of then,and now.Tell them difference to health + quality of life,hospitalization etc x

[Blue58 in reply to Patk1]

Thank you Patk1. I'm used to fighting my corner but have found over the years that some medical people do not like the fact that you are knowledgeable about your condition and what works for you. We are all different but sometimes I feel that we are all meant to fit inside the same box. I know many people have IV at home but by the very nature of the severity of my asthma I know I can become poorly very quickly and that's why I was told it was not an option for me but by trying to keep me out of hospital I'm finding I'm spending much more of my time in hospital. Just need to get the medics to recognise that fact.

[Patk1 in reply to Blue58]

Yep,yr right.hospitals r there for us but poor do whn simple changes wld reduce yr stay.xx

[cofdrop-UK]

It’s not keeping you out of hospital though is it? I am sorry to hear your asthma is so troublesome you are ending up in intensive care. It must be very scary. Yes I do understand how scary SOB can be. One of the reasons I went into 5* instead of doing ivs at home is my v low sats and retention of co2.

I wonder do you have a face to face consultation soon. Sounds like a discussion with your con could be beneficial. It would be interesting to hear his reasoning and for him/her to appreciate things from a patient perspective.

Good luck. Please let us know how you get on.

Cx

[Blue58 in reply to cofdrop-UK]

Hi cofdrop. No consultation any time soon I'm afraid. Don't know what it's like in your hospital but we have about 12 respiratory consultants and unlike a few years ago when you would be assigned to one consultant and his team which was usually a consultant who specialised in your condition, unfortunately it's not like that anymore. Outpatient appointments seem to be a thing if the past which I guess is down to covid. They now do a rota system and you have to deal with whichever consultant is on duty which may be better for them but not sure it's always a good thing for the patient. Personally I preferred the old way of working when a consultant got to know you and understood what worked for you. The ethos behind having so many differences of opinions makes it confusing for the patient and I don't believe it makes the system more efficient, far from it. I do wonder how many others there are out there who feel they are deteriorating through so many differences of opinion and no regular contact with one dedicated Consultant.

[cofdrop-UK in reply to Blue58]

That’s a Shame. You may want to contact the secretary of the consultant you have most confidence in. Might be worth a try.

I feel as you do re GP surgery. I asked when i registered years ag for a gp with a special interest in respiratory and could always see him and he knew my lung. Retired now and it’s pot luck and it’s usually the ‘revolving door’ doc available!

If we have an unplanned admission we can end up on general respiratory and the duty doctor would be assigned as your con. However they sometimes liaise with the cf team and they would sometimes see you. If you’re lucky the cf cons take their turn om ward duty.

Also assessments for nebbed abs are done in general respiratory.

When I first met my Prof con he was the only cf con but had amazing ideas re building a centre of excellence. Despite funding etc he has done a brilliant job and has ideas for more improvements.

If you were here you would undoubtedly be seen in outpatients by one of the 4 cf/pcd/bronchiectasis consultants, who are all excellent. We are always seen in clinic by a con, but we could see a registrar if we are slotted in or something crops up when checking smart site etc. We never sit in the wAiting room butgo straight into an examination room. There we have obs weight etc. We are then seen by specialist nurses for spirometry, smart sites etc. Then we see a consultant. Neither the consultant know who they are seeing until they enter and we don’t know either, not that it matters.

Because of the success of the triple combo for some of our cf brothers and sisters, if there is room Patients with pcd/bronchiectasis can go onto the cf ward if planned. You would be seen every day be one of the four consultants. He’s done a brilliant job and he’s not finished yet.

I agree with you totally re the duty pot luck system is easier for them but definitely not patient friendly.

Cx

[Jk1957]

Hi Blue 58 . It’s so hard to manage bronchiectasis as it progresses I feel . I’m not having good run since Christmas & on fourth dose of Clarithromycin. I find it very hard to get a sample to send in for analysis as I have to hit it quick as bleeding gets out of hand otherwise .I’m hoping like you to discuss IV in hospital or at home or maybe try inhaled antibiotics

I’m just hoping something different works

[Blue58 in reply to Jk1957]

Hi Jk1957. Whilst sputum samples are important in the treatment of bronchiectasis, like you I find it difficult to get the sputum up sometimes. Proper and regular chest physio always worked for me but it's not something that is readily available anymore I'm afraid. I take regular carbocisteine and have a hand held device to assist in helping me to expel the sputum and exercise drainage techniques on a daily basis but I still don't feel its an adequate substitute for proper physio treatment. Many years ago I would have physios visit me at home on a regular basis. Today the only time I seem to get any results from sputum is when I'm in hospital and the chest physios have been working on me but it's not always available in hospital either. I tried the inhaled antibiotics but it made my asthma really unstable and had to be stopped. There are a lot of people who do get some relief from the inhaled antibiotics though so it's worth discussing with your respiratory team.

[Jk1957 in reply to Blue58]

Thanks Blue 58;. Always great to read how others find their treatment .