I am thinking of having another port-a-cath fitted. I have been enquiring to our local Intermediate Care Team and the Vascular Surgeon as to whether my husband and I can learn how to administer the IV antibiotics. I seem to be coming up against a brick wall. I am not sure whether it is a Postcode Lottery and we are in the wrong area. Has anyone been able to be trained, or their carer in giving IV antibiotics? If so, who did you contact to arrange it?
Hoping someone can shed a light on this. The NHS are so busy, it would take some of the pressure off.
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LMEI
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Hi LMEI, I’m a bit confused - you state you are thinking of having another port fitted. I wonder why the first port was removed and if you had the port why you were not trained to do your own IVs. I believeto some extent it is a postcode lottery.
Personally, like many people with BE on here, I have been administering my own IVs at home theough a midline. In fact I had a midline in for a year (far too lomg in my opinion) during lock down. I have for some time now had a port which is amazing when IVs are required. The reasoning may have something to do with the fact although I am colonised with pseudo I cannot tAke Cipro, Azith or nubulise any of the macrolide abs, so basically relianton IVs, unless I grow one of the more usual bacterium. If I have pseudo alone I do not get high temps and can crack on with abs at home (consultant directed). Unfortunately this year Ihave had pseudo + covid or viruses running alongside and it’s when I have the 2 together is when I am too unwell and have therefore had 3 inpatient stays, although I was allowed home when my crp went down enough to continue ivs at home.
I am, like many here under the care of a centre of excellence re cf/pcd/bronchiectasis unit. I wish it was the case for everyone.
Thank you for your reply. Can I ask what area you live in?
I have asked years ago about giving my own IV's but got no response. My first port got blocked as a nurse didn't put the heparin in, well, she did, then flushed it out. The second one after 3 -4 years caused me pain. I am glad you have a decent consultant, sometimes we feel as though my one doesn't know what to do now. I have asked to have a one-off consultation at the Brompton, just to see if there is anything else.
At least with doing your own drugs you can spread the doses apart. My last experience was having 3 doses of Meroperem in 10 hours! Needless to say, that made me feel worse and then a few weeks later I was told by my consultant that the pseudamonus was resistant to what I was on!
I will keep pursuing this but not sure who to turn to.
Any tips on helping shortness of breath? I do postural drainage twice a day to keep my lungs clear, but I seem to be running to stay still.
omg that all sounds grim and I am so sorry to hear it. 3 doses in 10 hours Ouch! May I ask where your porT was placed and a rough area where you live - some folks on here may be able to point you in the right direction of a supportive good con. Why would you consider the Brompton as a one off rather than your ongoing consultations. One reason I can think of is if it is far away you can sometimes go into a local hospital in an unplanned admission, where there might be less expertise. If you don’t feel confident in your consultant, then maybe if it’s possible you might want to check out a bronch specialist you could access either online or perhaps someone can help you find one on here.
No I don’t stay positive all the time as I also have other medical issues but we really don’t have a choice but to Bounce back or we will be defined by our conditions.
The port was on the right side above my right breast. I still get the odd pain from it but assume that's scar tissue. I live in Northamptonshire.I spoke with the British Lung Foundation and they said about a one-off Brompton visit.
I am not sure what I want. I ask my Consultant lots of questions, although the last appointment she was running an hour late so I was rushed through.
Do you flush your port yourself and where is it?
The reason I am unsure about the port is that the Nurses at Home Team do not access ports and the Intermediate Care Team might struggle to do 3 times a day. If no-one can give the IVs, it means being in hospital just to have IVs 3 times a day. I always feel I am blocking a bed, and I hate being in hospital. Hence the reason for doing it ourselves.
As you can see from Blue’s reply and from info re your own hospital arrangements, it depends on the hospital set up.
I can only explain how the cf/pcd/bronch team work re IVs. 1. They can be administered in hospital. 2 They can be administered by an oPAT team who visit usually once a day and the IV runs over the 24 hours (never had rhis so cannot comment. I do know others have 3. If unwell I would phone the liaison nurses and they would arrange an appointment with one of our consultants. If it is decided by consultant IVs are required, we would discuss which.
The liaison nirses (Who are amazing) would insert the Huber needle into the port to bleed back samples. They would then dress around the port and put on an extetion in exactly the same way they would had you had a midline.
Patients with cf have their srynges, needles, abs and Heparin delivered, quite rightly but we have to take everything back home ourselves. Funding I would guess.
Administration of say Meropenem is no different if you have a midline or port from the patients point of view, apart from with a midline you draw up 1 bottle 2ml of Heparin but with a port you draw up 3 bottles 6ml.
With regards to adrenalin we are always given an emergency pack, which comprises of antihistamines, steroids and 2 epipens, and if we didn’t I would not do them. Never needed them so far and hope I never do.
Half way through one of the liaison nurses does a home visit and sees to the smart site and usually takes blood from it.
End of IVs you see a consultant again.
Originally I was trained whilst in hospital and both you and the clinicians have to be confident.
I am so sorry you are still getting pain. I chose to have the port in my arm but it’s each to their own decision.
Have you thought of Birmingham. littlepom speaks very highly of them. I guess London is not that much further.
Good luck whatever you decide.
Cx
forgot you asked about flushing the port. It is flushed by the liaison nurses when they have inserted the needle and taken bloods. The rest of the time we flush ourselves first, then admin the ab, then flus and then inject the Heparin whilst doing our ivs. At end IVs the last flush is given by the liaison nurses with us injecting the last drop or two whilst they take out the needle. Xxx
forgot again. When port not use liaison nurses call to my home roughly every 8 weeks to flush but if I have an outpatient appointment they will do it then x
Hi LME! I have a port-a-cath fitted and have to have specially trained nurses out to administer the ivs. The community nurses or even paramedics are not allowed to use them. I was told by a paramedic only a few days ago that if they used it and I got an infection at the site then they would be liable. I think it's all to do with the high risk of infection as to why only specially trained nurses are allowed to use them. Maybe that is why they would be reluctant to train you to do it yourself unlike some who have been trained to administer the ivs through a midline. 8'm not an expect but just guessing that may be the reason behind it.
HiHow long have you had your port? You are not able to get trained to give IVs yourself?
I was once told it was if you had an allergic reaction to the drug and there would be a nurse there to give you the adrenalin injection. Not sure how true that is but it probably is due to infection.
Most nurses can access canulas but when it comes to ports, its more specialised. Not many nurses can access them.
I don't think they will let us learn how to do it ourselves. We will just have to rely on the NHS!
I had mine fitted a few months ago, mainly I think because there were hardly any good veins left in my arms from all the cannulas I had fitted from numerous courses if iv antibiotics to treat bronchiectasis infections and psuedonomas. I was in and out of hospital like a yoyo. They decided to try the ivs at home and explained to me that only specially trained nurses would be able to administer the ivs through the port. I am still on the fence though as to whether the ivs at home are working as I am currently back in hospital with another severe infection after completing a two week course at home about 3 weeks ago. Personally I think it is down to the 2 week only policy for a course of iv antibiotics regardless of how much of the infection has been quelled. Years of experience has taught me that 2 weeks of ivs are not always sufficient to kill off my infections and I do wonder if this new policy is why I am deteriorating because as soon as I have finished a course within less than a month I am needing more and in actual fact I've had more antibiotics since the 2 week only policy was introduced than ever I did when I was kept in hospital until as much of the infection had been irradicated as possible. I was told by one Consultant that I would never get more than 2 weeks of ivs in one go anymore as that is the new policy because of the overuse of antibiotics even though I've had probably 6 times more courses of antibiotics under this new rule than when I was under the old rules of being kept in and being hit with antibiotics until I could feel I was getting better. They decided about 10 years ago to scrap oral antibiotics as they were not working for me and started me on ivs only. Sometimes it would take 3-4 courses to get on top of the infection but now because it's one course only regardless of how ill I may still feel, I believe I am deteriorating because of it and I am certainly having more antibiotics throughout the year than ever I did under the old rules. The only benefit for me personally from having a port-a-cath is that I am not constantly having needles pushed into my arms.
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