I apologise if this has been discussed previously, I couldn't find anything in the search box. Due to having extremely rubbish veins and needing iv immunoglobulin every 3 weeks, I was told yesterday to consider having a portacath. I know all about them as I am a paediatric nurse on a CF ward, am just after personal opinions of anyone who has one. I don't feel it appropriate to sit down with the kids I work with and ask them what it feels like etc.

Does anyone have any experiences?


3 Replies

  • Hi Sarah,

    Sorry to hear you're having such problems with your veins. I'm in a similar situation, in that my veins are now so bad that it's often impossible to cannulate me, and I end up needing a central line - I also only have one good site for central line insertion, too, due to previous complications, so the whole thing is quite an issue. I'm not on IVIg but I do need IV access approximately every 6 - 8 weeks for the usual amino, antibiotics etc. When I was admitted over Christmas I was all geared up to have a portacath inserted as soon as I was well enough, but then I got sepsis from a c-line (not for the first time) and that put me off the whole idea of permanent access - I became convinced it would just get infected in short order. However, after another admission when I needed IVs and access was a huge problem, I have now reconsidered and am just waiting for my consultant to refer me.

    I have some theorectical knowledge of how ports work, and so on, but less than you, I am sure; and I have very little practical experience. I found it very useful to chat to the adult CF nurses about it - the CF services locally are at the other teaching hospital to the one I attend, but one of the CF nurses very kindly came over when I was in and talked through the whole thing with me. She also brought some of the portacaths and needles for me to look at. If I had wanted to, she may have been able to put me in touch with other patients who had ports - so that may be something you could consider. I also had quite a long chat with one of the resp registrars who I know quite well, who had just done a job with the CF team - she shared her experiences of using ports, and was very positive about the whole thing.

    There is a little info on here, particularly if you search under 'port' rather than 'portacath'. There seems to have been a few people on here with negative experiences, which I guess is inevitable.

    I'm sure you're already aware of this, but a key issue that has been discussed with me is who is going to access my port, in terms of the initial needling of it. As you probably know, most doctors and nurses are not trained to do this! I reckon I'll probably be able to needle it myself for the routine flushes, with the aid of a mirror, but I'm sure I will not be in a fit state to do it when acutely unwell. My husband is going to be the main person who will access it for me. Apparently having one or two named people only accessing it is key in reducing the risk of infection. Once it is needled, apparently any IV trained nurse should be able to use it, as long as care is taken with clean technique and it is 'locked' with Hep-sal or similar after each use.

    I'm sure I've not told you anything you don't already know, and I don't, so far, have the practical experience that you're after - sorry not to have been more help. When I do get mine, I'll let you know how it went!

    Take care

    Em H

  • Thanks Em

    Fortunately for me my flat me is also a paeds nurse who has accessed many ports so she will be able to do it in the event of needing A&E as its always her who drags me there in the first place. I always have the same nurse on the unit too so her and probably resp nurse will mean that there is always someone to do it! Don't think I'm brave enough to access myself!

    I'll keep in touch and let you know if I have mine first as it could poss be within the next few weeks.


  • Hello Gloomy,

    Like you I have rubbish veins and receive immunoglobulin. However, when IV access became a problem with me, I switched to sub-cut infusions of the immunoglobulin. Because they can only infuse a small amount, it does have to be done once a week, but on the plus side I have been trained to do it at home so no more frequent trips to the hospital!

    My unit was very against a portacath because of the infection risk, particularly high if your immune system is already a problem.

    It might well be worth asking about training to do it sub-cut? It's made a real difference to me.

    Best of luck,


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