Emma Tilley
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Hickman Line won't bleed

Emma Tilley
Posted by
04 Jun 2015

Anyone had this problem?

Went in for my line care today and even though my line would flush they couldn't get any blood from it! This worries me as I'm scared I'll have to have it out and have it replaced and with a stem cell transplant coming up I need it to work!

Comments

04.06.2015

Hi Emma,

I was very fortunate not to have any problems with my Hickman Line when I went in for my BMT for CML. However, I do know a number of people who did have problems with theirs. Some found that theirs sorted themselves out but others had to have them resited and are still here today some 11 years on.

Good luck ahead of your transplant and if you want to talk to anyone who's been where you are at any time please don't hesitate to get in touch. My email is ajackson@beatingbloodcancers.org.uk

Anonymous
04.06.2015

Hi Emma, my dad had to have his line re-sited in amidst chemo and begore his BMT. All worked out fine in the end and he found the new line more comfortable too.
Best of luck with your treatment and stay strong. Xxx

Anonymous
04.06.2015

Hi Emma,

I was 22 when diagnosed with AML, I had a problem with my hickman line in the first 2 months of treatment, it got an infection and did have to be taken out but it honestly was not a problem - I was asleep throughout as I was getting a biopsy at the same time.
The second line lasted very well and for a long period of time - it was 3 months after that I had my stem cell transplant (now at 23 I'm 8 months post amd doing well)

Its a scary thought but honestly, if you have to have the line out, it's not as scary as it seems and you will be alright :-)

Good luck with everything.

Anonymous
04.06.2015

Hi Emma. I have DLBCL and had two hickmans replaced because of infections in the line and around exit site. Got my last 3 rchops through cannula, then another hickman for methatrexate for the brain. One year remission now, so don't panic, it will be sorted.

Good luck, I wish you well.

Anonymous
04.06.2015

Hi Emma!
Had to have my Hickman replaced before my BMT forAML! Bit of a problem but once resited had no problems. Now 5 years post transplant and so far doing well! Keep your chin upand think positive x

Anonymous
04.06.2015

My husband had a port which had to be removed due to infection. They then put in a pic line. No issues with that.
Good luck on your transplant.

Anonymous
04.06.2015

Hi Emma, I saw a link to this post on Facebook (via Leukaemia & Lymphoma Research) and thought "hey, that happened to me!". When I was being treated for AML I picked up a bad infection that they suspected wasn't clearing up as the bug was 'clinging onto' the plastic of my Hickman line. As a result I had to get mine out and another put in around a week later.

Getting it out was absolutely fine, you get a local and the nurse practitioner took her time to loosen it to reduce any scarring and then just some little paper stitches (if I remember right). A week later I had my second line put in just next to it, there was a bit of discomfort afterwards, as there was with the first, but at least I knew what to expect. and now, 5 years out of treatment you can barely see the marks left by them.

So try not to worry, if it needs to be replaced it'll be over and done with sooner than you think, and I always quite liked having my line - was a lot quicker and convenient than having to get canulas all the time.

All the best, I'll be thinking of you,
Louise

Anonymous
04.06.2015

Hi my daughter had AML and she had lots of problems with her hickman line,because it gets infected.The only thing i can truly say is trust in God not many people do after they exeprience this.

Anonymous
04.06.2015

Hi Emma Tilley,
I have had 4 cancer battles in my life and I am in remission now, I had problems with my hickman line and my pic line, all you want to do is try and keep your fluids up and stay positive the staff will do what they thinks best to get your line working, they will send like a unblocking fluid through which normally works.
That took two or three goes with my last line which only came out about two months ago I think.
If you ever want to ask me anything, just send me a message, Mike Nolan from Oxfordshire.
I am trying to register o the site ☺.
All the best keep in touch x
Mike Nolan

Anonymous
04.06.2015

I had mine replaced after it became infected it was no problem at all and I had a successful stem cell transplant, this was 13 years ago. Good luck with your transplant xx

Anonymous
04.06.2015

Hi Emma, Don't worry too much, I only had mine removed because I had an infection in it but they will try everything they can before deciding if you had to have it changed and they can also put in a Pickman Line which goes into the arm instead. I had one of these before my BMT and it was great.

Anonymous
04.06.2015

I had a stem cell transplant
2/1/2 yrs ago
I have been Cancer free
For 1-1/2
Years
I just met my donor
He was from the UK
I had it done in the Mass general hospital
Can't say enough about
Good luck
With your stem cell transplant
Celia

04.06.2015

 

Emma, I had to have 3 Hickman Lines (and when I had stem cells harvested a line put in my groin). You will be okay. I quite often had problems providing blood, and used to have to do the chicken dance (jumping up and down and flapping my arms!). Sometimes it may be that you need food/drink and it may be fine another time. They will find a way. Good luck and best wishes

 

Anonymous
04.06.2015

I cannot hope to understand how you are feeling Emma.
That's just one of many things I know bugger all about.
But I do know that you show courage that is just awesome.
Sort it Ms.Tilley. xxx

Anonymous
04.06.2015

My Mum has CML as well and she is fighting it like the trooper she is. My friend also has ALL and has had his stem cell transplant 2 years ago and in full remission. Be strong Emma you can do it girl!! Don't let this shit beat you!!! Xxx

Anonymous
04.06.2015

I had a similar problem and though its worrying you have to trust in the wonderful medical team Listen to relax music beforehand use lavender essence to keep you calm use mindfulness and easy breathing activities You are stronger than you think Hugs

Anonymous
04.06.2015

My son Joe (6 - Burkitts Lymphoma) had his first blocked line the day before BMT. A dose of Urokinase with an extended stay sorted the problem! He's had a few blockages since but now 10 months with his line and 4 ½ months since BMT not much to fret about apart from the "regular blockage". Chin-up and good luck with all thats to come.

#DeleteBloodCancer

Anonymous
04.06.2015

My son Adam is being treated for ALL had a few problems with his they fitted him with a midline while he finished his chemo having new Hickman line fitted soon ready for when he goes to QE soon for BMT

Anonymous
05.06.2015

Hi Emma,
I had AML when I was 8 and had a hickman line as well. I know how frustrating they can be and sometimes painful. No matter what happens, just remember that if it needs to get replaced then that is the absolute best option. After all, going into any kind of procedure, especially something so big as a transplant, you want everything to be working 110%. So just remember that. It would be an inconvenience for sure, but after the long road you've already been down, what's one more little bump, right? You got this. Just don't give up. Trust in your doctors and nurses and keep that chin up :)

Anonymous
05.06.2015

Hi Emma

My daughter is going through treatment for neuroblastoma and has been unlucky to have had her Hickman replaced for several different reasons (one was just a faulty line which was leaking!). She had the issue of no blood return, and it turned out the line was stuck against the vein wall, so you could push in but if you pulled out it sucked on to the vein. They ca often manipulate the line back into place without replacing it. If it does have to be replaced it is not a big procedure, and is worth it for the benefits you get.

Anonymous
05.06.2015

Hi Emma.
I managed to pull out my Hickman line in my sleep before my stem cell transplant.
It was an easy replacement, so don't worry about it.

Mags

Anonymous
05.06.2015

Hi Emma, my line had to be changed 4 times when I had AML 10 years ago, due to infection. The first time I had local anaesthetic to remove it but no sedative. The next time I had a sedative which was great! There's no stress with a sedative..perhaps you could ask for one. You'll be fine hun I'm sure..it's fear of the unknown. I really dreaded having my first one..For me it was worse than losing my hair! I never liked my hair anyway and used to dye it all colours, so I loved my funky long Hothair wigs and all my bandanas. .I enjoyed the change of image! However, a line was too close to my boobs for my liking! Even though they'd started to shrink as I'd lost weight. Like my hair they grew back and I've tiny little scars to remind me of the lines I wouldn't have done without in the end!!!

Anonymous
05.06.2015

Had lots of experience with Hickman lines, sometimes if you wiggle a bit, turn over or sit up straighter or take a big gulp of air they start to bleed. My son has had 3 lines in the last 2 years. He was just 14 when diagnosed with anaplastic large cell lymphoma. My son had transplant 7 months ago, his donor was unrelated and just 19. Good luck with your transplant, it will change your life.

Anonymous
05.06.2015

Hi I was just told I have lymphoma don't no what stage I'm at yet have to go to the hospital tuesday for a bone marrow biopsy can you tell me what happens next I'm very worried

Anonymous
05.06.2015

never had a problem with my hickman...the dr himself put it in, but when t came time to remove it that's when the fun began. the thought of the port scared me to death but it made life easier. i'm sure it will work out well...good luck and health to you