Hi everyone, hope you are all well and happy.
I am struggling with Haemophillus at the moment. 4 months of it. It has been suggested I have IV antibiotics and am wondering if anyone has experience of this please?
I smile everyday but it is p*%%£^g me off...
Thanks,
jools <3
I’ve had iv antibiotics for other infections. Oral antibiotics have work for haemophilia. I have also been vaccinated against this a couple of times. Do they do home injections where you live or better still let you do them yourself at home? Keep smiling 😁 don’t let it get the better of you.
It just keeps coming back! It’s getting me down as I can’t see an end to it. How long did you have I’ve for please?
I can understand that it’s getting you down. I’ve had ivs in hospital for anything up to a week but ive also done them myself at home for two weeks at a time. They put a line in my veins give the training and equipment to get on with it. Sometimes the line gets blocked but I’ve only had this happen once and got it changed the next day. I prefer it as it means no hospital stay. I think some have a nurse come in and do them but then you would be waiting in for them to turn up . Cofdrop-UK is an expert on all ivs. If the oral antibiotics aren’t working for you it seems the logical next step for you. I hope you get some relief soon. X
Thank you for your explanation x I think home it is what is going to happen x did it stop you doing stuff? I am crocheting Christmas presents 🥺
It very much depends on where they put the line. Often it’s in the crook of your elbow so some restriction in movement. If you have good veins they may be able to put it elsewhere. For crochet I would have thought if you have it in the arm you don’t use so much you should be fine. Cofdrop-UK sent me a link to a cover you can put on over your bandage when in the shower. I will dig it out if you need it. X
I can’t take any credit. The link was first sent to me by our dear friend Hanne, who unfortunately has lots of experience re IVs.
Cx
Hi Jools,
I have lots of experience of both HI and IVs. Is there anything specific you are concerned about Jools. I notice you are under an excellent consultant Prof L and I would think if he advised IVs, that’s defo the way to go.
Love cx
Thank you for your reply. Prof. L is not my consultant- my partner paid for me to see him in London last year. I can’t see him now obviously. I am waiting to hear from my consultant in Cornwall. I keep getting infections about a week after I stop taking antibiotics. Apparently she has been on holiday - I am waiting to hear from her. Before her holiday she said I could have IV at home. How long have you had canulla in for? I am trying to get my head around it...
Hi Jools,
Would be interested to hear what Prof L had to say and if he suggested a plan. There are some people who attend the RBH under the NHS who don’t live in London but I appreciate that is a long way for you to travel. The downside is if you go into 5* unplanned, you will go into a local hospital.
Is your consultant in Truro. I ask because I have just seen online a female consultant who has a special interest in cf, which means she should also have expertise in non cf bronchiectasis. If your consultant is thinking in terms of having IVs at home, the chances are she does have a special interest in cf/ncfbe.
HI is a toughie and very common in BE. I was plagued with it for a long time but now my main pest is pseudomonas.
I did see a specialist with regard to a vaccine. The guy before him gave the vac to most bronchs but the one I saw said the vac they give is the one they give to kids for ‘B type’ bacteria and the HI we grow is ‘non-type’ and so he doesn’t give it. Saying that I have heard quite a few folks saying they had felt the benefit of less exacerbations. So who knows!
Re the IVs. Not sure if you’ve had them before. If not, then I doubt they would go down the self administer at home route. They might allow you to stay at home with a community team coming in.
Normally you would have to go to hospital to have your PICC line put in (goes into a deeper vein than a cannula), It would stay in for the length of your course, usually 14 days. You may stay in, but if you were to carry on at home, you would have 2 doses at the hospital. To do them at home, they would teach you how to do it. No need to worry though, you would only do this if both you and they were confident and you felt comfortable. If it is decided to have IVs, wherever you have them, it would be good to order a PICC line cover to use when you have a shower.
Once they get you back on an even keel, your con may suggest oral prophylactic abs (normally Azithromycin 1 Mon Wed and Fri) or nebulised antibiotics. So you have options.
Unfortunately I can’t tolerate either and so there is only IVs for me. Don’t go by me though. As my con says I am complex and dropping to bits🤭. Also I have had a PICC line in since before last Christmas and waiting for a port.
Good luck and I hope you get some benefit from your treatment.
Love cx
Hi cofdrop
I think your right about the vaccine being the same as the one they give the kids. I was given it when first diagnosed with bronch after a blood test said I didn’t have immunity and again when I was first referred to immunology and after another dose of HI. I guess that maybe because the vaccine doesn’t offer the immunity we need. Having said that I haven’t had HI since the last jab possibly the pseudomonas won’t let it in! I hope you get your port sorted out soon it really has been going on so long now. Take care xx
Supposed to be Friday 13th - we’ll see!
Cx
I have everything crossed for you 🤞🤞🤞🤞 xx
Xxx
Thank you for sharing all your knowledge. I was reading the messages on my phone yesterday - it is a lot easier to understand on my computer. I can see what you are all saying 
the consultant is three weeks behind on her letter to my doctor, who I have just spoken to again. He has suggested one month of amoxy as it seems to work but cant get rid of it all in two weeks. Makes sense to me. And he is going to email my con. to see what she thinks. He said we will get rid of it somehow so I may be rid by Christmas thinking very positively xxx
I’m no doctor Jools but HI is a gram negative bacteria and Amoxil is generally used to treat gram positive bacterial infections. Can’t remember though if you did a sample. My HI was normally sensitive to Doxycycline which is used for gram negs, or co-amoxiclav.
If your doc hadn’t suggested he was going to get in touch with your con, I would have advised you to do so yourself.
Hope you get sorted soon.
Love cx
I do t know about positive and negative - I’ll have a google. My doc said he is going to contact microbiology and maybe I have both Doxy and Amoxy? And to stay on it a month... (on my phone again and don’t know if I’m repeating myself 🤣 sorry if I am x)
Haemophillus is a bugger. I had it in the summer from May until July. The first oral antibiotics weren't strong enough to knock it out; the second lot + steroids eventually got rid of it, sort of. I feel OK now, but the last x-ray showed there is still infection down there. It's a real pig, isn't it.
The idea of vaccination sounds interesting.
Best wishes - hope they get on top of it soon.
Thanks - I have had it most of the time through the last 4 months... I want it gone!
I'm not surprised - so do I. Hang on in.
Hi Jools. I am just home from hospital having had 9 days of 2 lots of IV antibiotics. Feeling better in myself but my breathing has suffered, probably 9 days of inactivity and damage done. My infection is pseudomonas, had a week in hospital a year ago and doing well since then until it took over again in August, although had been on Azithromycin for the past year. Felt quite guilty being in hospital taking up a bed when there are really needed just now. Fortunately we are in a very low Covid area. Just wish it was possible to have support in the community and have IV at home, but not to be in our very rural area here in North East Scotland!! It's good to hear of other members experiences. Thank you for your posts. Take care everyone. Warm wishes Carol xxx
How was this diagnosed and what symptoms did you have before diagnosis? Thank you
It was diagnosed via a sputum sample to microbiology. My symptoms are that of an infection - I ache all over, fatigue and lacking any energy.
Do you have a magic wand or a solution?
long term chest problem
long term cough
Azithromycin long term use for bronchiectasis
Antibotics Daily long term
long term antibiotics Azithromycin 
