Hi - I have just had my Hickmann Line inserted this afternoon - and am a bit taken aback by how long the dangly bit is! Have you any tips for how to live with this for the next 18 weeks? - and also to help my OH, neighbours and colleagues live with seeing it as well?
… especially - how did/do you cope with it at night? I have so much trouble with night time hot flushes that I do not wear anything in bed (wearing nightwear for 5 weeks thru recent DIEP reconstruction was a real trial!) … and I sleep so much better on my front (nearly a week of managing to sleep on my front again - 5 weeks without re DIEP was a serious nightmare).
Please - any tips welcome!
When the stitches come off, u don actually feel the line is there, just live normal life with it. But just avoid water going in the entrance.
Hi geeG
I found the best way to cope with the appearance of the line was to coil it round a couple of times and put a couple of large dressings over the entire area protecting the end of the line with a lint pocket. Not easy but eventually got the hang of it. Family and friends soon got used to the sight of it and I did wear a sleeveless vest top in bed as was worried about dislodging it. As you will be going for weekly line care you will find the nurses know the best and most discreet way to secure it.
Good luck, you will get used to it - if you’ve had it put in for the chemo you will find it a really painless proceedure - unlike others having it put through the veins in their arms.
Hi geeG
I’m having a visit from a district nurse Mon,Wed and Fri now until the stich comes out (after 3 weeks I think) and she is changing the soft dressing that covers the exit site. She’s due tomorrow to flush it too. It’s looped under the soft dressing to stop it moving and then the ends I’m taping to my chest - I asked for some of the white tape from the hospital. The nurses at the hospital suggested wearing a soft bra and popping the ends into it (I’m using a sloggi one). Another also suggested getting one of those little soft mobile phone holders, putting them in the end and hanging it round my neck (weird suggestion but I kind of know what she means).
I’m in my first week of sleeping with it and it is hard at first. I know what you mean about not wanting to pull it but luckily I can sleep on my back.
My problem is getting a good wash. I’m flannel washing at the moment.
I was told when the stich comes out a clear waterproof dressing will be put on but any tips from anyone about keeping it dry and still having a shower will be much appreciated.
My veins are very pleased I’ve had it though, they are just starting to feel better. And the chemo is much eaasier.
Andrea xx
Hi Fiona00, gmc and And40 - thanks so much for your suggestions - I joined a research trial to be able to get a long line from the very start of chemo - was hoping for a Portacath - but a Dickmann Line has to be better than straight into hand/arm veins … (especially as I don’t much like needles!).
Ummmm. “Wear a bra for the night” … Having been wearing a bra for 24 hrs a day since DIEP - necessary for 6 weeks - I have been counting down to THIS WEEK to be able to sleep without it - ! - so a further 18 weeks of 24 hr wearing does not engender enthusiasm!!
I’m hoping I can get a waterproof dressing to cover the end of the Hickmann Line and allow showers - so it seems I shall have loads of questions to ask them tomorrow at my first dressing change… meantime my salt bath on Sunday was so good for my op scars I think I shall have a ‘half bath’ tonight so that my scars can get the benefit & I shall make VERY sure my L shoulder /etc stays dry …
Thanks again Ladies - I shall look forward to reading any further discoveries about living with the dangly dangly external bit that may appear here… Meantime - thanks again and very best wishes with your Hickmann/Chemo Journey… x
thank you to everyone here - and to Others sharing info elsewhere - for your reassurances, tips and encouragement… already there is so much less discomfort - just 4 days later! - and last night was less uncomfortable too. I begin to think I may be able to cope with the line anyway… hugz… x
Didn’t quite dare to salty water half-bath early in the week - but I did tonight - and oh - my DIEP belly scar and belly button feel soooooooo much BETTER for it!! Oh YES! (So do my feet and ‘nether regions’)!
BUT REMEMBER - you have to be very VERY careful that the Hickmann Line dressing and link part get NOWHERE NEAR the bath water…. x
Oooops - so remiss of me to say, And40, that I am so very VERY pleased that your veins are feeling better from being released from the chemo - I’m afraid I just wimped out at the thought…
Hoping that you too are finding it getting easier to live with in the meantime …… x
I had a Hickman line put in last August and have not had any problems with it. I find
it a boon when it comes to blood test as my viens are rubish as I expect yours are!
I anchor the liine with two pieces of micropore tape and that keeps it secure while
asleep. It works well. Stay positive and all will be well I am sure. Lots of
good luck. Joy
Folk have said the Hickmann Line gets easier to live with when the stitch is taken out - they are SO right! My stitch was taken out this morning - quite nippy at the time - but oh - sooooo much easier now!
… just need to find a way of sleeping that does not unlock the clamp …!
Yes, I agree. Particularly having the waterproof dressing. Only half in the shower but it seems to work. I’m still very aware of it by my neck though. Anyone else?
Andrea. xx
Yes - kind of a dull ache - finding this a little easier to ignore tho - so still feeling benefit - and FAR better than poking for veins… hope it’ll stop being inflamed after each re-dressing now… just about settles down over the week then Bam! Again… maybe needs a different cleaning solution…
Well - we found what was causing the problem this morning when the dressing was changed for about the sixth time… part of the stitch was still there! - so that was removed today and it now feels fine. As for my night time problems - elsewhere on the forum someone recommended the Asda ‘softie’ bra at £6 - and I have to agree it is comfy to sleep in and is the best way I have found of holding the line at night - I need to wrap the clamp in a swab or clean tissue for comfort, and as my clamp undoes itself at night I also put a rubber band round it to hold it closed (tho not tight! If tight I think it might damage the line…). Wishing everyone with a Hickman Line a comfortable journey thru this. And hugs… x
Gosh - another month further thru this! Time goes crazy doesn’t it…
Update on my Hickmann Line is that I am still soooo pleased to have a line in place to bypass my arm and hand veins … wimp, yes, but giving thanks for ‘Research Trial’ making line accessible…
Still sometimes aware of neck site; entry site on left chest always gets a wee ‘crusty’ bit that irritates until the dressing change (wonderful, wonderful husband volunteered for training to do this = he is finding this very straightforward to do, tho somewhat nerve-wracking while learning - and JUST PURE DEAD BRILLIANT for me re weekly dressing changes fitting in with Life and Work… no waiting on DNs … GREAT!) … entry site is then a bit red and irritated for 2-3 days … and then the crusty bit develops! … stops Life a Being Boring … I guess! … 
I wanted a portacath … the Research Trial allocated the Hickmann Line… external dingly dangly bit still annoying … but I am sooooo glad overall to have this access route for chemo … apart from the hospital needing to train more staff to be able to do what my hubby does! ( … had to wait AN HOUR at my last clinic appt for someone who could do it … clinic always insists on doing it when blood tests taken … always insist bloods taken before clinic appt … so in by 08.30 … dressing finally happened at 10am … 9am clinic appt finally happened at 10.30 … then Radiologist (09.50 appt!) was also knocked back to after 11am … had meeting at work not had to cancel my stress factor would have been sooooooo significant!
Giving thanks for the Christmas break … hugs and encouragement to All Of Us … x
Kerumbs … it is now June 2015… first anniversary of finding my breast cancer has just passed. Re-reading these posts reminds me how slowly time passes during chemo - then you are suddenly at the end of it and can’t quite believe it… my Hickman line certainly helped my morale as I would have found chemo direct into my arms very difficult indeed. As I took clots in my lungs from a DVT in my leg I ended up with the line for several weeks longer than expected (removal complicated by blood thinning therapy). Still another 2 months of Warfarin. Minor scarring from the line but this is really not noticeable, not sore and fading steadily. Being alive is good - Life is good - ENJOY! This may be the best it gets - time will tell - but I aim to enjoy life as much as I can. Join me. Hugs x