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Portacath - pls help

26 REPLIES 26
Sam_BCC
Member

Re: Portacath - pls help

Hi NannieSpiky

I’m sorry to hear that you are having a pretty tough time at the moment. I’m sure the other users will be along to support you soon.

In the meantime if you need some extra support or just to talk things through do give the helpline a call on 0808 800 6000. Here you can talk with a member of our helpline staff who are there to offer emotional support as well as practical information. The lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

Best wishes Sam, BCC Facilitator

NannieSpiky
Member

Re: Portacath - pls help

Hi ladies
Just an update on my portacath which has been a very testing time for me. Since last posting in July the port has been working really well and treatments have been great. However, my last treatment resulted in some yellow fluid coming out with the needle which was swabbed and blood cultures came back clear. Then, at the weekend the skin around my port broke down and has resulted in a hole which shows the port and is leaking fluid. Saw my cons on Tuesday and am now waiting for an appt to have the port removed as it is an open wound which is prone to infection so, obviously the port cannot be used anymore. Apparently, this is an extremely rare thing to happen but that doesn't make me feel any better at the moment. They are planning on reinserting a smaller port somewhere else in my chest but this can't be done for at least six weeks after the removal of this one so I will have to endure them trying to find a vein for two treatments - oh joy!
As you can imagine, I am really apprehensive about having to go through the insertion again and the fear of infections but as I'm on iv treatment indefinitely, and my veins are useless, I don't feel as though I have much option. Putting a smile on my face for friends and family but feeling a bit cheesed off with it all at the moment. Some things are certainly sent to try us
Liz x

NannieSpiky
Member

Re: Portacath - pls help

Thank you all for your help and advice regarding my portacath.
Had phone call from BCN today to see how I'm feeling as my treatment is due next Friday. Think she was checking to see if I was still going ahead with it! Anyway, I am going to collect some Emla cream before treatment to see if this will help. She said that it is much better than the cold spray but it does make me wonder why this has never been mentioned to me and I only became aware of Emla via this forum!
Dawn, interesting point you made about insertion of port as BCN also mentioned to me that she has spoken to the Dr that did the insertion about my infections and he was quite concerned apparently because he said that infections usually occur for some reason due to something that happens during the initial procedure. He might be in contact with me about this now that he has been made aware of the situation. Will wait and see.
Needless to say my fingers are crossed that treatment next week goes smoothly.
Liz x

Guest user
Not applicable

Re: Portacath - pls help

Hi all I was one of the portacath fans until mine did develop a dvt in myjugular resulting in a week long stay in hospital and blood-thinning jabs every day for life now. And back to the hassle of trying to find a vein every time now. If you get ANY pain at all, please do get it checked ASAP. I was due to go on holiday 2 days before my clot was discovered which probably would have been fatal. Don't mean to scare everyone, I was a huge fan of my port and in most cases they're fine x
horsie5050
Member

Re: Portacath - pls help

Haya, Sorry that you are having such a tough time. My chemo team give me Emla cream to put on an hour before i arrive in the morning. They the double glove and gown-up and then they swab the area with this orange liquid which kills bacteria etc, they then use a hand ( unlike Dawn's who use a gripper tool) to feel for the port then they just push it in, there is no pain. Like Dawn's team they then check for a blood return and before poutting any tubes etc onto the end everything is wiped about 10 times first. When they take it all out they clean, clean , clean... having said that MRSA, CDIFF and infections are non-existant here( I don't live in the UK ) . They are also flushing and they clean with herceptin ( i think) before they finish and put a plaster on me. Sounds like your team need to sharpen up on infection control..... good luck for your next visit...xxx

dawnhc
Member

Re: Portacath - pls help

Hi liz,

i wonder if it has nothing to do with the procedure but to some underlying cause from when the port was inserted. I did know someone with a similar problem and she ended up in hospital on three occasions with infections. When they decided to remove the port after six months they found the source of infection was around stitches that should have dissolved but did not and she was allergic to the thread that was used to anchor the port.

Dawn

lucinda
Member

Re: Portacath - pls help

I had my port fitted in May and to date have had no problems,other than nurses failing to get access. So sorry you have had so many problems and as I now have no veins they can really access I understand you wanting to keep it.
I have never had emla cream or cold spray used.The normal procedure is clean the area of skin over and around the port with anaethetic,access the port with the gripper needle,test to see it is working by drawing blood and then start treatment.Following zometa and saline it is then flushed with 5ml heparized saline.When needle is removed the port is just covered with a plaster which I remove the next day. When I am having zometa I go to chemo unit the previous day for blood test ,they access port and take bloods and then cover the needle completely with a large dressing which I then keep in until I go for treatment next day.
Hope this helps and really hope you manage to sort the problem.

L xx

NannieSpiky
Member

Re: Portacath - pls help

Can't believe I am posting on here again about my portacath but it is causing me grief once again and I can't get any answers from the hospital.
Having been hospitalised after fitment with sepsis, I have had three treatments into portacath and have just come out of hospital after another stay with an infection yet again in the line. Am now on oral antibiotics which,hopefully, seem to be working as the line is not as sore or inflamed as it was.
Obviously, I am starting to get a little worried about losing this line as my onc has said that if I get another infection then it will have to come out. I really don't feel I could cope with the vein nightmare again if this had to happen and, at the moment,feel a bit disheartened especially when one dr in the hospital asked me why I kept getting infections in the line as if it was my fault!
Would any of you ladies be good enough to let me know what procedure you go through when you go for treatment into the line. Really would like to know if there's anything I can do to help myself or suggest to the nurses to stop this happening again. Also, I am given the cold spray before insertion of needle - would the emla cream be a better option?
Any advice would be much appreciated as I really need to keep this line.Thanks.
Liz x

tillybob
Member

Re: Portacath - pls help

Hi Nanniespiky, good to hear your feeling better, it was very unlucky for you to end up with sepsis, you must have been very uncomfortable and in pain !
I had my 1st infusion just 6 days after my portocath was inserted, it was still quite tender and it took 2 attempts to get the needle in but it's so much better than the canula, I am still a little sore but I think the stitches are tightening a bit now, they come out on 23 rd, hope you find friday a good experience.
Jean

NannieSpiky
Member

Re: Portacath - pls help

Hi ladies

Thanks for your replies and apologies for not replying sooner but I only came out of hospital last night after being there for a week.
Had to go in as my temp shot up to 38.5, they took a blood test and gave me some iv antibiotics into my portacath which was very painful and then sent me home! Later that evening my temp spiked at 40, phoned the emergency helpline and was told to come in. Put on iv antibiotics and oxygen as they thought I had pneumonia. Turns out it wasn't pneumonia but sepsis with the result that iv antib were put directly into the portacath in the hope that it could be saved. My consultant told me that it was very rare for this to happen but everything had been done by the book. Didn't make me feel any better!
After being on iv antib for six days they are hopeful that the line has been saved and I am now home on oral antib and feeling much better and everything around the portacath site and my neck now looks 'normal' much to my relief.
Obviously, I have just been unlucky but feel so relieved that they have saved this line and it doesn't have to come out as every blood test done from the arm was a nightmare.
Going in Friday for my normal intravenous treatment and I think I'll be holding my breath until that needle is safely in the portacath. Fingers crossed everything will now go smoothly!
Liz x

pesteringpixie
Member

Re: Portacath - pls help

I had a portacath fitted on 24april under a local anaesthetic and no sedation. Done by a radiology consultant and i chatted and laughed with the nurses the whole hour - this from someone who had started a thread numbed by terror of the thought of the procedure.

I hade 4 stitches in my chest and 2 in my neck and only small dressings. Neither incision bled and i never even needed paracetamol.

Had first FEC on following day. Little spray of anaesthaesia, bit of a push and thats it. So easy and comfortable. Looking round at others in the unit with hands in bowls of hot water, heat packs, restricted movement because of cannulas, i am overwhelmed with gratitude for my port.

I do have to have cannula for muga and they get one of the chemo nurses over as i have tiny veins that go into hiding.

Would recommend a port to anyone who gets the chance. Just one thing, do ask for a plastic card. I set the alarms off in Debenhams last week and alarms will go at airports and tube stations and any venue that has highly sensitive scanners. Makes life a bit more exciting!

Much love
Pixie xxxx

pesteringpixie
Member

Re: Portacath - pls help

I had a portacath fitted on 24april under a local anaesthetic and no sedation. Done by a radiology consultant and i chatted and laughed with the nurses the whole hour - this from someone who had started a thread numbed by terror of the thought of the procedure.

I hade 4 stitches in my chest and 2 in my neck and only small dressings. Neither incision bled and i never even needed paracetamol.

Had first FEC on following day. Little spray of anaesthaesia, bit of a push and thats it. So easy and comfortable. Looking round at others in the unit with hands in bowls of hot water, heat packs, restricted movement because of cannulas, i am overwhelmed with gratitude for my port.

I do have to have cannula for muga and they get one of the chemo nurses over as i have tiny veins that go into hiding.

Would recommend a port to anyone who gets the chance. Just one thing, do ask for a plastic card. I set the alarms off in Debenhams last week and alarms will go at airports and tube stations and any venue that has highly sensitive scanners. Makes life a bit more exciting!

Much love
Pixie xxxx

tillybob
Member

Re: Portacath - pls help

Hi I had Portocath inserted on Wednesday last week, like you with local anesthetic, I am still sore and in some pain but paracetamol seems to be working for me.I find that the area is bruised , but is healing ok.
I was told to be aware of redness and heat , it would indicate there could be infection. I was told to go to A&E if concerned. Hope that helps.
Jean.

NannieSpiky
Member

Re: Portacath - pls help

Hi Ladies
Had portacath fitted Thursday under local which went absolutely fine. However, since Friday I have been in pain with it which doesn't seem to be going away. Obviously, there is a lot of swelling and the bruising is coming out but even with regular medication I am in discomfort. I usually handle pain well but starting to find this hard to deal with. Can anybody put my mind at ease and say that this will become easier to handle and I am simply being impatient or should I get it checked out by the onc dept?
Thanks. Liz x

Guest user
Not applicable

Re: Portacath - pls help

I had mine fitted last September after my veins collapsing and because I am having herceptin as well as chemo. I LOVE MY PORT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Best thing I have had done since my diagnosis!!!!!!!!!

Mazzalou
Member

Re: Portacath - pls help

I had my port put in on a Wednesday and the dressing was changed at the hospital 8 days later. I still had a small area left to heal and showers were banned until I had completely healed - baths only until then. I never had to change my dressing myself, but all hospitals do things differently so perhaps best to ring the unit in the morning.

Guest user
Not applicable

Re: Portacath - pls help

Thanks everyone. My mum had it done under local this morning. Was ok although she got palpitations during it possibly due to the sedation so they had to monitor her blood pressure for a while after. Her dressing is very bloody at the moment and we dont recall what the nurse said about changing the dressings. Can anyone help? When did you change your dressing? We have spare dressings. She was told not to shower until wed evening. I know we can ring the unit in the morning but if someone could help once again that would be great! thanks

Mazzalou
Member

Re: Portacath - pls help

Hi London09

Another portacath supporter here!

Mine was fitted under a local anaesthetic by a Doctor and I had chemo using it straight afterwards. I didn't feel a thing and even chatted whilst having it inserted - if I did doze during the procedure I certainly do not remember doing so!

No worries about having it flushed once a week and no risk of infection either and you can also forget that a portacath is there too as totally hidden under the skin so you can swim, shower, bath etc and nothing on view either. I just wish I had been advised to have one fitted BEFORE my veins gave up after my 1st couple of FECs.

Herceptin goes in and blood samples can come out. The only downside seems to be that there is a lack of training in accessing them from staff outside of chemo units. I may have the correct port, but I still need a cannula when it comes to muga-scans, ct scans or mri scans so I still have to play the occasional 'hunt the vein' game!

Good luck to your Mum but tell her to mention her concerns about DVT so that they can put her mind at ease.

ChoccieMuffin
Member

Re: Portacath - pls help

A radiologist did mine. Had it for over a year and I love it, because I avoided all the nasty vein problems. Haven't had any clot problems (or any problems at all!) with it, and there's much less risk of infection etc with this than with a PICC or Hickman line. And it can stay in for years if necessary. Hope your mum's happy with it.

Guest user
Not applicable

Re: Portacath - pls help

Thanks for all your replies - a great help. Just a couple more things did any of you get dvt's? Does a doctor do the procedure or nurse technician? x

dawnhc
Member

Re: Portacath - pls help

Hi London09,

Just to echo what the others have said really. I had mine fitted 6 years ago and it has never given any problems. In fact mine is sited higher up, just about 1" below my collarbone and because it is really just skin against bone there it does protrude - a bit of a bump the size of a 1p. I don't need numbing cream at all because I don't feel anything when the put the needle in, and when they remove it afterwards. One difference with the other posters though - my hospital doesn't do it under local, but under a general anaesthetic.

But the bliss of not having to play hunt the vein! makes it worthwhile.

Dawn
xx

VerityC
Member

Re: Portacath - pls help

Hi,

I have a portacath. It was fitted the morning of my first chemo treatment under local anaesthetic. I cried quiely all the way through the op ( about 40 mins) although I had no pain. I just hated the idea of what was happening to me. BUT it has been fantastic. I am so pleased to have it, having experienced the discomfort of nurses trying to find my veins, and after having had several drugs administered through a canula in my hand when I had an infection. That hurt after a while and I realised how awful chemo would have been without the port.

I hope all goes well for your mother.

Verity.

raechi
Member

Re: Portacath - pls help

Hi,
They mentioned it to me as part of my consent for the op. Don't be afraid to ask questions though if they don't say anything.
Write them all down and take them with you and make sure you are happy with the answers.
Rae

Guest user
Not applicable

Re: Portacath - pls help

Hi,

Thanks both for your replies and i'm glad you have had no problems with the portacath. So they do mention blood clots before you have the procedure? As the only info my mum has been told is when the appointment is. thx

raechi
Member

Re: Portacath - pls help

Hi there,
I had one fitted a couple of weeks ago and the day after I had it they administered my chemo via it. The operation itself didn't hurt. I had it done under local anaesthetic and I was sedated. The op took about 45 minutes total. Iwas in a bit of discomfort afterwards but nothing regular painkillers didn't fix.
They talk to you about the risks and before I was given the opmthey tested my blood for clotting factors. Please just make sure your mum tells them about having DVt in the past. I was told that if I develop one I will have to inject myself with blood thinning drugs.
Does that help at all? Any questions, please feel fee to ask.
Rae

Guest user
Not applicable

Re: Portacath - pls help

Hi there
I had a portacath fitted back in February and I have only positive things to say about it. It was fitted under sedation so I have no recollection of the procedure but it was very straightforward. The surgeon discussed with me where he would put it and we agreed on a spot as low as possible so it wouldn't be visible in low necked tops etc.
After it was fitted it felt a little strange and I was aware of it for a few days until it settled down but I can honestly say that I forget it's there now as it's invisible and I can't feel a thing.
On the day of chemo or Herceptin I've been given some Emla cream to put on at home - this is a local anaesthetic cream that numbs the skin. It takes about an hour to work and lasts up to 4 hours. By the time I get to the hospital and they attach the line it is completely numb and you don't feel a thing. No more hunting for veins or painful cannulas.
I hope this helps reassure your Mum.
Good luck
CG xx

Guest user
Not applicable

Portacath - pls help

Hi,

I would be grateful if anyone who has had a portacath can share their experience with it? What was the procedure like? My mum is having one fitted tomorrow as it is so hard to find a vein now and had problems with a Picc line. However, when i was last in the chemo unit i overheard a man with a portacath saying that he had developed a dvt because of it. My mum has had a dvt before and is always worried about getting one. I havent mentione it to her. Should she still get one fitted or not? Advice would be appreciated. Many thanks