Hickman line maintenance. Your advice please.

[Cressida]

Wonder why they call themselves "community nurses". Hmmm. I had endless trouble with the district nurses who did not know how to do it, had to read the instructions whilst they were doing it and would start and then realise they didn't have all the kit they needed to complete the job. They also terrified me with their poor hand hygeine (wash hands, put on gloves, then route about in bag, then carry on....). I had to wait all day and they completly forgot on 3 occasions, so I had to keep phoning them and waiting some more. I also got caught in endless petty arguments between them and the chemo nurses about who should supply (and pay for) the kit. I begged to be allowed to get it done at the chemo unit, where they knew how to do it, had all the kit and were clean. No joy. You need to really keep an eye on them, which is all very well if you are a nurse yourself, but if you just an ordinary patient, who feels ill and vulnerable, it can be hard work. Sorry if this rant is not very helpful. I have surprised myself a bit by how angry I feel about them in retrospect. What I was going to say is, don't dismiss the idea of going to the hospital if it would mean that the chemo murses would do it. If it would still be the same "community nurses" then there is probably no advantage, apart from having an appiontment and a supplies cupboard present. Maybe try and do a deal - they come in the week you feel most poorly and you go to them in the "good" week? Once again - sorry about the rant. I almost deleted it.

[Lola65]

Hi Bumpkin,

I think your nurses are being unreasonable.

My district nurses have come to my home to take bloods the day before each chemo session, also the day after each chemo session to give me the Neulasta jab, and would also have come to do any flushing. The flushing wasn't necessary in my case because I have a portacath fitted and that only needs flushing every 3 to 4 weeks, so is done at my chemo (and now Herceptin) sessions.

[benedictus]

Hi Bumpkin. I was sent home from the hospital with 2 weeks worth of stuff for flushing and was told that I will need to ask for more stuff from the chemo unit because the GP don't keep supplies. I found it a bit disconcerting when the DN phoned to check I had instructions on how to flush the line as "she hadn't done one for ages". She also had to make 2 phone calls during the process to make sure she was doing it correctly, but I would prefer that to her killing me!!! Although it took about an hour last week I can see that the process is actually very easy and I reckon we'll have it down to about 10 minutes by the end of this whole business. I can also see that it's very easy to get OH or a friend to do it, but now I've got the DN in place I think I'll stick with that so I don't have to mess around should someone not be around one week. As Lulu says, if you know when they're coming it's ok to stick around at home.
I had the stitch out on my neck last Tuesday, which involved a lot of pulling and tugging because it had been tied so tightly. The others will come out in 10 days time when I go for my second chemo.
Hope this helps.
Tamsin x

[Bumpkin]

Thankyou so much for your replies. I shall call the BCN to clarify on Monday. I hadn't thought about training etc, but that seems likely. I was sent home without any supplies for flushing the line and redressing and she was not happy about that. I shall know better next time! have a good weekend. have been awake all night with steroids! X

[Lulu34]

bumpkin

when i had my hickman line there was never any problem with the DN coming out to me... although only a couple had actually done the specialist hickman course and were able to bleed and flush the line, so was usually the same nurse but when she was on days off the ones that came didnt always know much about it as even though were trained its not something they did regularly.... so i just had to keep them right lol.

but it was only one day a week so wasnt an issue to stay indoors and i was actually really poorly during chemo so didnt go out much anyway and couldnt go out unassisted.

i got a couple of wee infections around the entry and exit wounds when the stitches came out but nothing serious and only had 1 night in hosp.

hope all goes well with your treatment.
Lulu x

[Witchypoo]

I had a pic line fitted when I was in hospital with a chemo related infection. When they discharged me, they gave me no instructions about what to do and just said the district nurses would see to the flushing - when I called the district nurses, they knew nothing about it and neither did the doctors! It was a nightmare getting it all sorted (even the district nurses weren't very confident and didn't know all the stuff they needed) - they used to come out every Monday even though I was quite prepared to go to a clinic (couldn't do that either).
Although the line was great while I was having chemo (I'm still on Herceptin until November), it was a pain in the bum so I had it taken out in February. I have one good vein that gets used for the H every 3 weeks and can now have a lovely bath without the fear of getting it wet - and I can go swimming.
I really don't think it's unreasonable for you to have someone to come and sort it out at home for you if you're still having chemo - life with BC's hard enough without any extra grief x

[benedictus]

Hi Bumpkin. I thought it was standard for the district nurse to come and flush the line. Certainly that's what is happening with me. I was told that the hospital would only do it when I went in for chemo. I agree with you about perhaps not feeling well enough to get in - I would have struggled if I had had to get in to have my line flushed on Tuesday. Is it worth speaking to your GP/surgery practice manager about who you understand to be responsible?
xx

[Bumpkin]

Hi anyone with a Hickman line. I had one inserted yesterday, followed by first docetaxel chemo. Today the community nurse rang to arrange my flushing appointments. She asked me to attend the clinic at the local hospital, but I said I thought she would be coming to my home to do it, and I was worried about a) would I be well enough to go and b) risk of infection from any hospital patients. She said, but you are at risk every time you go for chemo. But i said, I go straight to chemo ward and I am well on chemo day rather than one week in after treatment. Anyway, she said, ok we will visit this time and then discuss how we go from there, but i can't give you a time, so you will have to wait around. I now feel very guilty. It is ten miles to the hospital and they must be busy. Am I over reacting? I did tell her all my Picc line flushes last year through to Jan of this year were done as home visits. What do you think, please?