As I’ve mentioned many times on this site, I can’t eat normal food so instead liquid food is pumped into my body through tubes. Unfortunately those tubes have a limited lifespan and one of mine recently failed.
A Hickman line is a long piece of silicone tubing which is inserted through the skin on your chest, then travels upwards and enters a main vein in your neck. One end of the line remains outside of the body, while the other end stops just above your heart. My first Hickman line was inserted about 6 years ago. I’ve used it solely for pumping fluid into my bloodstream, but they can be used for removing blood or injecting medications. Hickman lines have an average lifespan of 2-3 years. I looked after mine carefully and managed to make it last much longer, but like its owner it was showing signs of old age. ?
About a year ago my line became partially blocked. After two failed attempts it was unblocked at The Royal London Hospital using pure alcohol. I was given a spare ampoule of alcohol in case the line got blocked again, which it did a few weeks ago. I tried using the alcohol, but bizarrely the substance that had previously dissolved a blockage jammed the line completely. However it wasn’t all bad news, as after injecting the alcohol I felt a bit drunk for the first time in years!
As my Hickman line was completely blocked I was admitted into The Royal London Hospital to have a replacement line fitted. After six years inside my body removing the old line was a struggle for the surgeon. It snapped twice in the process, I needed a number of stitches and my neck was pretty painful for a few days. Thankfully fitting the new line was straight forward. It was inserted in the Interventional Radiology Department. There were eight people in the theatre looking after me and the surgeon was able to watch where he positioned the line using a moving x-ray which was shown on TV screens. It was a good reminder of the amazing quality healthcare which is available in this country ‘free at the point of use’ and how lucky I am to live here. In most countries I would have died of malnutrition a few years ago.
It was my fourth admission onto the same ward at The Royal London Hospital, so I got to see some nurses who feel like old friends which was nice. The hospital opened in 2013 at a cost of one billion pounds (£1,000,000,000), but the TV in my room didn’t work and the wi-fi was useless! So it was a very dull week but my Kindle and iPod got me through.
The procedure happened two weeks ago now and the wounds have healed well. I had my stitches out a few days ago which was the final stage of the process. My new Hickman line feels more robust than the last and it’s easier to clean. Hopefully it’ll keep me going for another few years.
With hindsight it would have a been a quicker and smoother process if I’d asked to have the old Hickman line replaced due to its age, rather than waiting until it completely failed. That’s worth mentioning as my PEG tube has a life expectancy of 3 years and it’s currently 7 years old. Asking for it to be replaced would be a smart decision, but having just spent an uncomfortable and boring week in hospital I think I’ll take the stupid option and leave it alone a while longer. ?
Ces – somehow, and not for the first time, you manage to make the abnormal (and inherently unpleasant – at least for the rest of us), sound normal. Like, changing an old sweater, or fitting a new battery. In reality, it wasn’t like that at all, was it?
I’m glad of course it’s been done, and even gladder that you are back home and safe and stitches are out and you are getting back to normal.
Although of course your everyday isn’t normal either.
D
A Reluctant Contortionist
March 15, 2017 @
5:53 am
Thanks for your comment. Unfortunately it is normal for me and for a lot of others with EDS. It’s not how anyone would choose to live, I miss food a lot, but it’s far better than the alternative! I try to concentrate on the things I can still do, and I’m lucky I have a very supportive family (unless we’re discussing club football, when support quickly vanishes ?).
I had only heard your father’s version of events, which failed to report the rubbish wifi.
Clearly by far the most traumatic part.
I am familiar with Hickman lines as Stuart had one fitted for his cancer treatment. They are fine when they work but scary when they don’t so I can imagine it was a huge relief to get a new one up and running when it’s your lifeline.Set a replacement diary entry for 3 years time in case you decide to change before the line does ?
Glad you had such great medical attention at the hospital. You are right we have a lot of amazing treatment in this country but often only the bad stuff gets reported.
Thanks for the read and reminder of how much we take for granted.
Best wishes
Ali
A Reluctant Contortionist
March 16, 2017 @
1:16 pm
Hi Ali,
Thanks for your message. After 6 years it was a surprise the line completely blocked. I was admitted into hospital within a few hours and had to put my life on hold. So yes it was a very big relief to get it sorted. TV and wifi would have helped the time pass quicker, but maybe a digital detox every so often is a good thing?!
It’s great to be back home. I’m still catching up on messages and jobs though. I’ll try to delegate a few to my father (slim chance ?).
I hope you, Oscar and Freya are well.
Best wishes,
Ceri.
Thanks for sharing, and I so agree with contributor David (quite possibly an aging relative of the same name) about the way you are able to offer an objective commentary about these challenges. Your website is very readable and you have certainly lost none of your eloquence. All best wishes for a period of free flowing tubes.
A Reluctant Contortionist
March 17, 2017 @
4:35 pm
Hi John,
Thanks for your kind comment, always nice to hear from you. A period of free flowing tubes sounds great. It’s been an odd few weeks so some time with friends and family and particularly my crazy nieces would be ideal.
Say hello to all of your family from me please.
Ceri ?
Hiya Ceri,
We’re glad to hear that you’re now safely back home and getting back to normal.
And now that you have access again to a working TV, you’ll be able to carry on enjoying Tottenham’s continuing ascendancy over Arsenal!
Best wishes,
Phil & Helga
A Reluctant Contortionist
March 18, 2017 @
11:15 am
Hi Phil & Helga,
Sorry for the slow reply, I’m still catching up after hospital. But it’s great to be back home. I’ve been enjoying lots of football and I’m particularly looking forward to the north London derby in a few weeks. It’ll be a tense day in the family, but I’m confident I’ll be smiling afterwards! ?
I hope you’re both well.
Ceri ⚽️
David
March 12, 2017 @ 11:12 pm
Ces – somehow, and not for the first time, you manage to make the abnormal (and inherently unpleasant – at least for the rest of us), sound normal. Like, changing an old sweater, or fitting a new battery. In reality, it wasn’t like that at all, was it?
I’m glad of course it’s been done, and even gladder that you are back home and safe and stitches are out and you are getting back to normal.
Although of course your everyday isn’t normal either.
D
A Reluctant Contortionist
March 15, 2017 @ 5:53 am
Thanks for your comment. Unfortunately it is normal for me and for a lot of others with EDS. It’s not how anyone would choose to live, I miss food a lot, but it’s far better than the alternative! I try to concentrate on the things I can still do, and I’m lucky I have a very supportive family (unless we’re discussing club football, when support quickly vanishes ?).
Alison
March 13, 2017 @ 5:40 am
Hi Ces
I had only heard your father’s version of events, which failed to report the rubbish wifi.
Clearly by far the most traumatic part.
I am familiar with Hickman lines as Stuart had one fitted for his cancer treatment. They are fine when they work but scary when they don’t so I can imagine it was a huge relief to get a new one up and running when it’s your lifeline.Set a replacement diary entry for 3 years time in case you decide to change before the line does ?
Glad you had such great medical attention at the hospital. You are right we have a lot of amazing treatment in this country but often only the bad stuff gets reported.
Thanks for the read and reminder of how much we take for granted.
Best wishes
Ali
A Reluctant Contortionist
March 16, 2017 @ 1:16 pm
Hi Ali,
Thanks for your message. After 6 years it was a surprise the line completely blocked. I was admitted into hospital within a few hours and had to put my life on hold. So yes it was a very big relief to get it sorted. TV and wifi would have helped the time pass quicker, but maybe a digital detox every so often is a good thing?!
It’s great to be back home. I’m still catching up on messages and jobs though. I’ll try to delegate a few to my father (slim chance ?).
I hope you, Oscar and Freya are well.
Best wishes,
Ceri.
JOHN
March 13, 2017 @ 10:34 am
Thanks for sharing, and I so agree with contributor David (quite possibly an aging relative of the same name) about the way you are able to offer an objective commentary about these challenges. Your website is very readable and you have certainly lost none of your eloquence. All best wishes for a period of free flowing tubes.
A Reluctant Contortionist
March 17, 2017 @ 4:35 pm
Hi John,
Thanks for your kind comment, always nice to hear from you. A period of free flowing tubes sounds great. It’s been an odd few weeks so some time with friends and family and particularly my crazy nieces would be ideal.
Say hello to all of your family from me please.
Ceri ?
Phil & Helga
March 13, 2017 @ 12:30 pm
Hiya Ceri,
We’re glad to hear that you’re now safely back home and getting back to normal.
And now that you have access again to a working TV, you’ll be able to carry on enjoying Tottenham’s continuing ascendancy over Arsenal!
Best wishes,
Phil & Helga
A Reluctant Contortionist
March 18, 2017 @ 11:15 am
Hi Phil & Helga,
Sorry for the slow reply, I’m still catching up after hospital. But it’s great to be back home. I’ve been enjoying lots of football and I’m particularly looking forward to the north London derby in a few weeks. It’ll be a tense day in the family, but I’m confident I’ll be smiling afterwards! ?
I hope you’re both well.
Ceri ⚽️