Iv antibiotics: Hi I've suffered from... - Lung Conditions C...

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Iv antibiotics

woodcarver999 profile image
24 Replies

Hi I've suffered from Bronchiectasis for some thirty years and for the last 8 have had Pseudomonas infections. The antbiotics I have been using are not killing off the infection 100% and the Respiritory team have suggested intra venous antibiotic. There seems to be different methods dpendant on the local Trust ie keeping you in or sending you home each day. Has anyone had experience of this procedure; and how did you cope?

24 Replies
RoadRunner44 profile image
RoadRunner44

Hello Woodcarver, You don't mention the name of the antibiotic you have been prescribed. When I was first diagnosed with bronchiectasis some years ago I was given a nebulizer to nebulize the antibiotic colomycin twice a day. This is supposedly one of the best antibiotics to suppress the pseudomonas present in my lungs. I understand that it is unlikely that pseudomonas are ever completely eradicated from the lungs but can they can be controlled. I haven't ever been offered intravenous antibiotics as I assume I manage my bronchiectasis quite well with daily lung clearance using a device called an acapella together with a rescue pack of Doxycycline when I have an exacerbation.

As there are a number of very knowledgeable bronchiectasis sufferers on here I would hope they will be able to advise you about the information you require.

You could also provide a sputum sample to be analysed which would advise your doctor or specialist nurse as to the right antibiotic necessary to control the particular bugs in your lungs. Wishing you well.

woodcarver999 profile image
woodcarver999 in reply to RoadRunner44

Thank you for your reply. As you may imagine after 30 years of suffering with Bronchiectasis I have jumped through most hoops. The Colomycin is currenly medication of choice by the medics although I would favour Ciprofoxacin which seems to work for me.

As I said earlier I would value input from someone who has been through the IV route before I can decide whther to accept it.

Thanks again

BionicLady profile image
BionicLady in reply to RoadRunner44

Hello RoadRunner44,

I hope you are well.

Can I ask which acapella you use please? As a fellow Bronch sufferer of some 23 years, I would love some help with my airway clearance methods. Thank you kindly.

RoadRunner44 profile image
RoadRunner44 in reply to BionicLady

Hello BL, So nice to hear from a fellow sufferer of bronchiectasis. When I was first diagnosed with bronch. I was given an acapella. I assume being such a long term sufferer you will have been given something similar too! However, last year my new consultant suggested I try another type. Its an Aerobika which is supposedly a better design which can also be used while in the lying position.. There are various versions used by different hospitals but they all are used to help expel the mucous build up in our lungs.

Hope this helps. RR

BionicLady profile image
BionicLady in reply to RoadRunner44

Thank you so much RR44.

Unfortunately, I have never been given any of the above but I will Google and maybe ask when my next admission is in few weeks time.

I hope you are in good health 😊

RoadRunner44 profile image
RoadRunner44 in reply to RoadRunner44

Hi again, Actually I am still unsure whether to take the azithromycin three times a week as prescribed by my consultant. This is because my consultant mentioned it is one of those antibiotics that can cause irreversible deafness. As I already wear a hearing aid I am reluctant to start taking them unless I become ill with regular chest infections,. So for the time being, as I'm quite well, I will wait and see.

The other problem I have is arthritis in the knee which is preventing me at the moment from joining my friends in the local walking group. Hopefully it will settle as I so enjoy walking in the countryside, in the fresh air, ending with a welcome cup of coffee or an occasional lunch.

How do you manage your bronchiectasis? Does it prevent you from doing things?

Cheers for now.

RR

With the caveat that I’m not medically qualified. Pseudomonas can be a difficult bacteria to treat, in part because there’s only one oral antibiotic that works against it, which is ciprofloxacin. If you’re quite regularly having symptomatic pseudo flares, or if cipro isn’t working, then the only alternative to treat an active infection currently is IV antibiotics. The basic principle of managing chronic pseudomonas, which is when the bacteria can’t be eradicated and keeps cropping up, is to treat the infection for at least 14 days with either cipro or an IV antibiotic, and then once the active infection is resolved, use a nebulised antibiotic such as colomycin to better suppress the bacteria day to day. Nebs won’t help an active infection. So, the use of IV antibiotics is fairly commonplace for those with conditions where pseudomonas is an issue, such as bronchiectasis. I know a number of members here with bronch have fairly regular IV antibiotics, and hopefully they’ll be along to reply to your post, but my daughter has had them regularly since being a newborn baby as a result of having cystic fibrosis. She’s almost 15 and has had a chronic pseudo infection since the age of 4 or so, so she goes into hospital 4 times a year for IVs to keep on the top of the situation. The main difference between IVs for cf patients and those with bronchiectasis is that you usually only get given one antibiotic to treat the responsible infection, whereas cf patients usually get given two.

With regards to whether you receive treatment in hospital or at home, my understanding is that it does depend almost entirely on the hospital (and therefore the trust, CCG, or health board) in charge of your care. Some hospitals are unable to provide any at home provision, in which case you have to receive treatment as an inpatient. Some set up arrangements with services that can provide nurses to come to your house, although this is not something that seems to happen too often, in part because some drugs are given three or four times a day. The third option in hospitals that can do so is that you have the first few doses of IV on the ward to make sure you don’t have a reaction and that there aren’t any serious side effects, and are then trained to self-administer the rest of the course before being sent home. For people who are relatively well, and where this is available, this can be an option that’s preferred by some patients as it allows people to continue day to day living to an extent, and there are members here who have done this. I’ve been trained to do IVs by her hospital, so have previously administered my daughter’s at home so she could attend school and things she would otherwise have had to miss, but what I would say is that it’s quite a commitment, and quite tiring. If you’re not feeling great and have no one else that can either provide support or takeover cooking and that kind of thing, I would personally say it’s a pretty big undertaking. Staying in hospital can have benefits, not least that you should have access to daily input from respiratory physios. It can be an opportunity to really get on top of your clearance so you can start afresh when you get out: the best defence against pseudomonas flares is chest physio, as sputum is what the bacteria need to multiply. If you live alone, and/or don’t have much support, staying on the ward can also sometimes be helpful in that food and housework is taken care of, so all you have to worry about is feeling better.

I’ve not come across hospitals having patients onto the ward on a daily basis just for the drugs and then home again for a long time (we did do that for a few days on two occasions when beds were desperately short years ago), but that’s not to say it definitely doesn’t happen. I would be surprised if it was, though, with the covid situation, unless some hospitals have set up day medical unit type scenarios to meet the specific need.

Bottom line, if the docs are saying they feel you need IVs, then I would say it’s the most appropriate course of action. It’s not something they suggest lightly, even in patients that are known to need IVs fairly frequently. But if not properly managed, pseudo infection will lead to lung damage and decline in lung function, so it does need dealing with. As it seems like it’s causing you regular problems, it would also be worth talking to the medics about nebbed antibiotics for maintenance treatment once you’ve fully got on top of the infection with the IVs.

woodcarver999 profile image
woodcarver999 in reply to

thanks for the comprehensive reply. As I understand it one part of our local trust will provide day care and on the other site it is 24hour on ward. I'll see what I can do.

CaliGuy7 profile image
CaliGuy7 in reply to

This reply is so great. Full of helpful, compassionate ideas. I wish the very best for you and your family

Lapis5 profile image
Lapis5 in reply to

Charlie, now the infectious d dr. wants to give me iv Meropeneum usually reserved for very s erious cases but i have had PSeudomonas for over a year now and 2-= 3 other lung infections and moulds. 4 pic iv antibitotics did not help in past year. Tomorrow ihave to decide whether to do this or not. very sick cold chills, green in lungs and sinus and sore all over. He said this drug could be a problem as Pseudomonas can become so resistant to it after one treatment that i could never get it again and then they may have nothing else to give me. I am in the US, California w UCD hospital. Any adivice appreciated. Thank u as i am really worried now.

GintyFerguson profile image
GintyFerguson

Hi...I did home IVs . Nurse showed me how and I had to show her I knew how! I even went to work with the line in. I had Tazocin. It is not difficult , lots of info given. Cleanliness being very important. After a few days my arm became sore and it turned out the line had not been put in properly. I went back to hospital for it to be resited.

That was a painless procedure. It is all painless in fact . Good luck.

busygardener profile image
busygardener

I have had to have iv antibiotics twice in last year .Went to a local health centre where the OPAT team are based .its a community nursing team team who do ivs .Was appointment based 8am and 5.30pm .Able to drive had line put in arm with water proof dressing was there about 30 mins each session.Thought system worked great as im mobile and can get out.Brilliant system

woodcarver999 profile image
woodcarver999 in reply to busygardener

thanks for the info, I was concerned that if I had to go to the furthest hospital whether I could drive home safely. How long does a course take; days or weeks?

busygardener profile image
busygardener in reply to woodcarver999

10 days and i was able to drive 🙂

Patk1 profile image
Patk1

Hope you soon get treatment,without too much inconvenience xxx

Lutontown profile image
Lutontown

When I've had an intravenous AB series of injections the first one is carried out as an outpatient in hospital where they install the canular, and then the district nurses came to our home and do the injections each day thereafter. Eventually the canular has to be changed, and so back to the hospital for that and the injection. Then the district nurses usually complete the course. In 2014, I had an infection with Staphyloccus Aureus bug, lasting from March 'til November, where oral AB wouldn't sort it, then a CT scan showed I had Bi-basal Bronchiectasis, and a course of IV AB knocked it on the head. One week later I had another chest infection which was sorted by an oral AB.

Mooka profile image
Mooka

I’ve done iv at home a few times. The Bronchiectasis nurses are very supportive and can be reached by phone. I did have problems with a blocked line once but this was soon sorted out. I came home and made packages of what I needed for each injection. As I’m immunocompromised I did them three times a day with two different abx for two weeks. You can get a sleeve from Amazon to put over your arm when you bath/shower. Given the choice I would always take the home route. I have nebulised colomycin ever since to keep the pseudomonas away. Good luck whichever route you go on.

davannh profile image
davannh

I have frequent trips to hospital for IV antibiotics. I used to do it at home myself but I had a few poor reactions (always at night) and I felt safer doing it in hospital.

I normally have two different IVs.

The most advantageous part of going into hospital (well the one I go to) is that the physios help with lung clearance. They give you loads of information about methods etc. I find it really helpful.

Also the medical team have more time to look at you properly and monitor your kidneys and blood results etc.

Chrisvern profile image
Chrisvern

Hi!

I've had 2 courses of IV antibiotics in the last year or so and, to be honest, neither of them has been successful in dealing with clearing up infections that are 'ciprofloxacin resistant' in my case.

The upside in Worcestershire is that you are dealt with at home, or in their local clinic, by Community Nurses supervised by the IV team. That saves the 4 times a day visits to hospital that other NHS Trusts call for. This way, you only go to the hospital once to have your midline fitted by an IV specialist.

For me, the real problem is immediate. In that after the 2 courses of IV antibiotics, I still have a ciprofloxacin resistant infection. My GP has tried to help with talking to the microbiologist and IV team but they all say that my Thoracic/Respiratory consultant must intervene/advise now. BUT the consultants are not doing that and are not answering my emails asking for an appointment to discuss my case. In fact, they seem to be ignoring me now as too difficult! That may be unkind but it is how I feel.

I have had a call from Respiratory nurses to discuss nebulised antibiotics again but I explained that I had been told before that nebulised antibitotics are prophylactic, i.e. to prevent infection, rather than cures or remedies for ongoing infections. Anyway, they've sent me notice of an appointment with them in December!

Meanwhile, I'm in to week 4 of dealing with a serious chest infection aided only by mucolytics and inhalers!

Are there any Thoracic/Respiratory specialists who monitors these posts? If so, I would really like to hear from them.

Sorry for the rant

Chris

cofdrop-UK profile image
cofdrop-UK

as you can see it is a post code lottery depending on people’s preferences and everyone’s particular hospital. I have been doing IVs at home for many years now. I have a port, which means we can crack on. I have just come out of hospital and carrying on ivs at home. I usually just get on with it but there are reasons why it has not been so straightforward this time. I will expla8n when I don’t feel so past myself.

If IVs are offered woodcarver, i would go for it whether that be inpatient, opat team or if they teach you to do them at home.

Please let us know how you get on.

Cx

crashdoll profile image
crashdoll

Are you under a specialist hospital? My local team couldn’t coordinate and they wanted me on a ward every time. I’m under the Royal Brompton and they said I can be at home for IVs as long as I’m well enough. This has honestly been a lifesaver.

On day 1, I go to the day ward and have a PICC line placed and have chest physio, see the doctor and have my first dose or 2. I’m then allowed home to administer the antibiotics and I return to the day ward at the end for a review and more chest physio. As Charlie said, while on IVs, it’s the time to be motivated with chest physio and make sure you do the airway clearance so you have to be committed.

I much prefer home IV therapy. I like being in my own bed and around ‘my people’. It means I can work from home flexibly too. I get very stressed and anxious in hospital due to negative past experiences so I tend to find I recover better at home. I think a key part is feeling confident in what you’re doing with the meds AND having a very low threshold for calling the hospital if you’re not sure or concerned. Better safe than sorry and all that.

Good luck. IV antibiotics have been a game changer for managing my bronchiectasis. I was initially reluctant but I find it get a good outcome after each course and it’s totally worth it.

Blue58 profile image
Blue58

I have bronchiectasis and have had pseudonomas for a while and suffer with regular infections. Until recently I was spending an awful lot of time in hospital receiving numerous courses of iv antibiotics. I can't tolerate any of the nebulised ones. Have tried colomycin, tobramycin, colobreathe and gentamycin but all affected my asthma badly. I now have a portacath fitted and have just completed my second course of iv tazocin at home. The nurses come in once a day to change the tazocin over which comes in bottles that slowly administer the drug over a 24 hour period. I am way past oral antibiotics as they are just not effective enough anymore as severe reflux was preventing them getting into my system, hence why they were stopped a number of years ago. Its much easier having the drug at home although I have had some really scary moments with some really bad asthma attacks but I am used to that. When the antibiotics start to stir everything up in my lungs then it does have a negative impact on my brittle asthma. It is a postcode lottery which I feel is totally wrong but my experiences with my previous hospital really taught me how it is so important to be in the care of a bronchiectasis specialist. Sadly I learnt the hard way after many years under the care of specialists and then moving to a hospital where there weren't any. I'm glad to say I am now under another hospital with a bronchiectasis specialist consultant and my care has been transformed yet again. The package of care I have now is much better. I was concerned about nurses coming in several times a day but with this set up they come every morning to change the drug over and the rest of the day is my own. The only downside is that there are no physios around to help with the chest clearance and obviously there is always the possibility that I may have to go into hospital if my asthma gets out of control. I would certainly try the ivs if you are comfortable with it.

woodcarver999 profile image
woodcarver999

Thank you very much for you history, I will bear that in mind.

One thing which has helped me enormously is attending the British Lung( or whatever they are called now ) exercise classes. I recall they did produce a DVD of the recommended exercises which could be useful if you are stuck at home. Regards

watergazer profile image
watergazer

Hope you get sorted soon x

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