Bronchiectasis iv antibiotics for pseudomonas

[Tinker26]

Just finished 2 weeks of iv antibiotics for small trace of pseudomonas aureginosa in my sputum,what normally follows next as have appointment with consultant next week ,will I be on nebs or will it be permanent antibiotics,feeling quite scared at present x

[OAP27]

Did you say you were in Liverpool? Were you in Broadgreen? If so, what did you think of the hospital, I’ve heard it has a good reputation. How was it in your experience?

[Tinker26 in reply to OAP27]

Oh no I was in aintree hospital but I have had friends who have stayed in broadgreen hospital and it is a great hospital x

[OAP27 in reply to Tinker26]

Thanks. Did they put a Picc line in? Did that hurt?

[Hidden in reply to OAP27]

It is usual now to put a short midline in. It is in your arm. It used to be a venflon or ‘bolus’ but a midline runs less risk of infection and can stay in up to a month. I refused a picc line when I was forced to have 8 weeks IV in 2015. You can refuse it too and they can put in a mid line or bolus.The antibiotic is usually given three times each day, depending on which ab they give you. There are several bronchs on here who are benefitting from a fairly new service where they put the line in and we can bring the antibiotic home and do it our selves.

You need to build up your confidence to do that though. I hope that somebody who has had a picc line will be able to tell you what it is like.

[Hidden]

Hi Tinker, it will depend on what your consultant thinks is the best way to keep the pseudomonas numbers down. Usually nebulising abs on a permanent basis. The ab which many people take orally 3 times per wk , azithromycin, isn’t very effective againat pseudo. The con will decide. No need to worry, this is all a way of life to keep us well.

[Tinker26]

Thank you Littlepom ,only for you and cofdrop I would not be here,I have followed your guidance from joining this forum .I am going abroad and worry about carrying nebs etc ...any advice would be appreciated many thanks

[Hidden in reply to Tinker26]

I take the ab bottles and water vials out of the boxes and put them in the suitcase with the needles and syringes. I put them in those zip lock plastic bags just in case. I will take 4 needles to cover a fortnight. (If the hospital tell you one for every dose ignore it for holiday. They change the protocol all of the time.) I cut the label off one of the ab boxes and keep it with my other documents. I carry my neb and declare it. Many airlines will give you 5 kilos extra medical baggage if you get in touch with them. I am going on a 3 week road trip and cruise in the US soon. So my type one diabetic granddaughter and I will be taking quite a lot of stuff between us. I don’t bother to neb on the plane. It is only one or two doses that I miss. I have never had a problem. Come back if you need any more tips.

[Tinker26 in reply to Hidden]

Thanks that's good news enjoy your fab holiday x

[Hidden in reply to Tinker26]

I took my then ten year old to Florida for a fortnight last year on 3 different kinds of nebs, including anti-pseudomonal antibiotic ones, and I can reassure you that it’s really ‘no big deal’ to travel with medication, even significant amounts of it, as long as you follow some basic advice such as keeping everything in original packaging with pharmacy labels attached and carrying a copy of your repeat slip from your prescription. A letter from your consultant listing what you are taking and why is never a bad idea, either, but even going to the US they weren’t interested in checking anything other than swabbing both myself and my daughter for drugs once I told them I was carrying significant medication in my hand luggage: I put 5 days worth of her meds in my backpack along with her nebuliser and physio gear just in case the hold luggage went astray somehow, as that would have been enough to tide us over whilst dealing with the insurance company and sourcing replacements. If you are carrying meds, particularly liquid meds, make sure to declare it as you hand over the bag for x-Ray when you go through security, but my experience was that’s the only thing different I had to do.

If you do end up on nebs to keep the pseudo under control, the good thing is that unlike some nebs where temperature control is critical to efficacy, the vast majority of them are either dry powders that you reconstitute as required, or premixed that can be kept at room temperature for a decent amount of time (despite the ‘must keep refrigerated’ stickers all over a box of it, tobramycin is actually good for 28 days) without any issue, which takes one less pressure off travelling with them.

[Tinker26 in reply to Hidden]

Thanks for the advice , best wishes to you and your family x

[Hidden in reply to Hidden]

A funny story about swabbing for drugs. My daughter is always stopped as she gets on the plane because we have an arab name. All Diabetes drugs for g daughter fine but gunpowder showed up on the swab. My daughter is a starting official for athletic events!😂

[Treed12]

Can i ask. How do you get to the point of iv antibiotics? Does your specialist arrange it? My gps have given me 5 different oral antibiotics and I've had a chest infection for over 7 weeks with bronchiectasis. Sorry to piggy back your post.

[Hidden in reply to Treed12]

I think that you need to call your consultant’s secretary and tell them that you are not well and need to see the con. Your GP is out of their depth.

[Tinker26 in reply to Treed12]

The bug I had needed ciproflaxin and unfortunately I am allergic to it ,as a pseudonoma had been picked up in my sputum the only alternative was IV drugs as oral antibiotics were being proven insufficient xx

[Treed12 in reply to Tinker26]

Thank you. I think ive almost exhausted the list of oral ones. My gp is trying to bring my consultant app forward so i may get somewhere with them.x

[Mooka]

Hi tinker26

Different airlines have different ways of dealing with this. I have just returned from a week away with jet2. I informed them I have a portable nebuliser and liquid meds and wanted to carry them in my hand luggage. They were fine and made a note on our booking. They said it may be as well to get a doctors note to get through security but check in was the only ones asked to see it. Security didn’t notice my large bag of meds. Will be travelling soon with Ryanair who, after a bit of humming and herring gave me a waiver letter to take with me and an extra bag allowance to take on board. You should always let the airline know in advance. Personally I don’t want to be parted from my meds in case the hold luggage doesn’t appear. It’s difficult enough at times to get them here. You will need a portable nebuliser. Evergreen can give you advise on the most suitable one for your meds. The hospital ones are more powerful but a lot larger. I hope you enjoy your holiday.

[Tinker26 in reply to Mooka]

Thanks so much for your help x