Elective IV Antibiotics

[LMEI]

HelloI suffer with aspergillosis, severe bronchiectasis and colonised pseudomonas.

I was in Glenfield in March for infusion IV antibiotics, one being a 2 hour infusion 3 times a day.

It was discussed at my follow-up about being admitted before I have a flare-up to have IV antibiotics to keep the bugs at bay.

After being admitted 4 times last year, I am so reluctant to go in to Hospital.

Has anyone been in this position and has it worked?

How do they know what drugs to give? Do they do bloods and sputum samples before?

Any advice would be greatly appreciated.

Thank you.

Linda

[PaulaMA]

Hi. I have bronchiectasis and colonised pseudomonas. Have had iv antibiotics in response to a flare up but also as elective as well. I went into hospital to have a midline fitted in the arm and then had the antibiotics admistered via 24 hour bottle. Three times, each for a two week course, I administered the drugs myself whilst at home, they can show you how to change the bottle. I had the equipment and antibiotics delivered to home. I was happy to do this myself but you could ask for health worker to visit each day to do this for you. Just need to keep line clean etc. One time I went in for a week as had need for daily blood tests due to unexpected complications.

I'm now trying nebulised antibiotics as another means of keeping infections suppressed. On Tobramycin, 28 days on the nebuliser then 28 days off. So far so good.

I hope this helps.

[LMEI in reply to PaulaMA]

That's interesting. I hadn't heard of the 24 hr bottle. That is something I can ask when I next see my Consultant. It's hard to stay on top of things. Thank you and keep well.Linda

[PaulaMA in reply to LMEI]

It means carrying a bottle around with you for the whole two weeks. But less risk of infection I the line and only have to change once a day. I've tried both 3 bottles a day or 1 per 24. Pros and cons for both.

[girl_DJ_b]

hello! I’ll shortly be going into hospital for similar treatment. I’ve had the 24 hour antibiotics pump at home via picc line but unfortunately didn’t actually get rid of the bug so I need to go into hospital to have the 3 infusions via drip every 24 hours. I suspect I’ll be in for 2 weeks and while I don’t want to as have a young family, it’s the only option we haven’t tried to get rid of this bug xx

[PaulaMA in reply to girl_DJ_b]

I've done the three bags a day at home. Ask if you can do this. They may want you in hospital for a few days at first. They can do a blood test at home when they change the dressing on the line at 7days, to check your bloods are OK.

[girl_DJ_b in reply to PaulaMA]

definitely will, thank you. To be honest part of me thinks that I need the round the clock care so I can just rest as I don’t have that option at home. Just want to give myself the best chance of getting rid of it as just keep releasing once treatment ends xx

[LMEI in reply to girl_DJ_b]

I hope your treatment works. These bugs seem to hide deep in the lungs and are quite comfy there. It must be difficult with a young family to get the rest you need. Never pleasant to be in Hospital, although the staff are usually lovely. Hope everything goes well.

Linda

[Alberta56 in reply to girl_DJ_b]

Good luck.🤞🏼🤞🏼🤞🏼

[Biker88]

some infections can be very difficult to treat and require stronger meds, blood tests will be used to monitor the absorption of the meds and infection levels. Unfortunately with a lot of meds there is a bit of trial and error to find one which is best suited to the current infection. For IV meds and regular blood tests hospital is the best place

[LMEI in reply to Biker88]

I know you are right about Hospital being the right place but just thinking about it makes me anxious. But needs must. I am OK at present as last IV's in March. Not sure how long they let you go before getting you in again.Take care.

Linda

[peege]

The IV abs I recall from past members with severe bronchiectasis are Tobromycin, Ceftazidime, Meropenum. There are a couple of others but I can't remember.......colomycin perhaps 🤔. I'm sorry I can't help more LMEI but I wish you every success whichever treatment you're given........I do hope you go for it with all my heart because the alternative would be the bacteria multiplying exponentially. Will they treat the aspergillosis at the same time to keep that down too do you think. I feel for you, it can be so daunting.

I hope you'll come back to let us know how you get on. Very best to you. P

PS it may be a good idea to call the helpline first guidance on what to ask the consultant when you see her/him. 0300 222 5800 uk office hours.

[LMEI in reply to peege]

Thank you for your reply. I don't feel too bad at the moment and I am gathering all the information I can get from fellow sufferers. I am hoping I can go without IV's for a few more months.I am keeping my chest as clear as possible with postural drainage and ACB twice a day, drinking plenty of water and trying to put on weight.

I will give them a call and ask for their advice.

Thank you.

Linda

[peege in reply to LMEI]

Whilst you're waiting for them to to start in the morning you could use the search bar, look up: IV antibiotics, pseudomonas, aspergillosis separately. Hopefully you'll find older posts &/or replies . Littlepom and Cofdrop were our pseudomonas and bronchiectasis experts, they gave excellent information to members like you. Their words are still here under Cofdrop and 'hidden' with a little searching.

[LMEI in reply to peege]

Thank you. I will do some digging.Linda

[Lapis5 in reply to LMEI]

I am in USA California and have gotten Ceftizine, Cefidine and Meropeum for Psedumonas colonized and Aspergillus and now Ecoli too. Oral drug for Ecoli.

have a Port now as too hard to shower w PIK line.

I cannot get rid of these infections for long and am on IV antibiotics oftenn for 2-3 weeks in my PORT with a Medicine ball that pumps it 24hrss at a time in a fanny pack,

Still hard to shower tho.

Now off them for 3 weeks and am reinfected. Dropped off a sputum culture today . willl see waht they say,

Feel sick, nauseaus all the time.

The medicine ball pump is the easiest option for me.

The hospitals are full so hard to go there now to stay. ER full too. be stuck in the hall for hrs.

[LMEI in reply to Lapis5]

The infections never seem to go away. I keep thinking I am going downhill again. The thought of going into Hospital again feels me with dread. I did have a port fitted quite a few years ago but it started giving me pain and was taken out. I did think about having another one put in, but there are not many nurses who can actually access them, so I didn't bother as I would still be having canulas stuck in my arms and the port not being used.

I hope you start to feel better soon. I am hoping the warmer weather will help us all.

Take care.

Linda