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Author Topic: How long do tunneled dialysis neck catheters REALLY last WITHOUT causing damage?  (Read 6824 times)
DialysisGoneFOREVER
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« on: January 16, 2016, 05:09:19 AM »

I'm sure many of you have had the tunneled hemodialysis neck catheter that is under your skin and goes right to your heart. They say you're supposed to have it taken out within 90 days but some people have it a lot longer than that. They say it can cause a buildup of scar tissue and stenosis in the vein and a major risk of infection of the heart. Yet some people have this catheter is 6 months to a year with no problem.

So what's the truth here? What's the longest you can have this neck/heart catheter in WITHOUT causing permanent damage? Also they say you're not supposed to take a shower with this catheter but many people do. So can you take a shower as long as the site is fully healed?
« Last Edit: January 16, 2016, 05:23:43 PM by FailingTransplantHELP » Logged
cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: January 16, 2016, 10:57:17 AM »

I don't think there are definite answers to any of your questions. Like with most things the answers depend on a gazillion  things, your body, your surgeon, your hospital, the weather etc. So you're lucky or you're not.

    :angel;


Love and luck, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Tío Riñon
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« Reply #2 on: January 16, 2016, 03:28:32 PM »

My father has refused to get a fiscula since diagnosed.  He has had a tunnel catheter, against the advice of the nephrologist, since he started dialysis in 2011.  He has taken showers with it on, but tries not to get it wet.

I'm not recommending this, but there are people who have one for an extended time.
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DialysisGoneFOREVER
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« Reply #3 on: January 16, 2016, 05:26:32 PM »

My father has refused to get a fiscula since diagnosed.  He has had a tunnel catheter, against the advice of the nephrologist, since he started dialysis in 2011.  He has taken showers with it on, but tries not to get it wet.

I'm not recommending this, but there are people who have one for an extended time.

Wow, your father has had a tunneled neck catheter for almost 5 YEARS when the nephrologists say 90 days?? Has he had to have it replaced since 2011 or had any stenosis, scar tissue buildup, or heart infections?
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Heisenburg
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« Reply #4 on: January 16, 2016, 05:46:59 PM »

Do you mean permacath?
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DialysisGoneFOREVER
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« Reply #5 on: January 17, 2016, 05:15:31 AM »

Do you mean permacath?

I'm talking about the tunneled neck catheter they put in when people first go on dialysis because it takes several weeks for a fistula to be good enough to work. Nephrologists say you should only keep those neck catheters in for 90 days but some people have them in a lot longer. So I started this thread to see if people have had negative effects from having it in long term. Also if people take a shower with them eventhough they say you're not supposed tos. One dialysis nurse already told me some people take a shower anyway.
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nursey66
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« Reply #6 on: January 17, 2016, 07:37:18 AM »

My hubby had one before his first transplant in 2002. They let him use it since transplant was to be soon , living related donor. However due to other medical issues, he had it almost 1 year.  About 10 months in, he had a TIA - mini stroke . Ultra sound showed a 95% occlusion on his carotid artery, on the side where the central line was placed.  His scheduled transplant was cancelled and he had an endocarodectomy, they went in to clean out the build up. The other side was fine , so, though the Drs didn't come out right to say the dialysis line was the cause, I believe it was .  He went on to have the transplant 1 month after the surgery.  When he went back on dialysis the second time in 2013, he had a fistula put in. Luckily he got anouther transplant in Sept.
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DialysisGoneFOREVER
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« Reply #7 on: January 17, 2016, 11:27:20 AM »

So nursery was the occlusion due to a buildup of scar tissue? They told me that's the risk of keeping it in too long along with major infection. Glad he's OK now and got the transplant!
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Tío Riñon
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« Reply #8 on: January 19, 2016, 09:31:08 PM »

My father has refused to get a fiscula since diagnosed.  He has had a tunnel catheter, against the advice of the nephrologist, since he started dialysis in 2011.  He has taken showers with it on, but tries not to get it wet.

I'm not recommending this, but there are people who have one for an extended time.

Wow, your father has had a tunneled neck catheter for almost 5 YEARS when the nephrologists say 90 days?? Has he had to have it replaced since 2011 or had any stenosis, scar tissue buildup, or heart infections?

That is correct.  Next month it will be 5 years for him.  There have been no medical issues related to his continued use of it.   I don't recall his having it replaced, but he has had other medical issues and it may have been done during a hospitalization and I overlooked it.  Nevertheless, he has never had a fistula or other access point.
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Michael Murphy
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« Reply #9 on: January 20, 2016, 05:57:15 AM »

First off you are better of with a fistula, less chance of a medical problem, and you can go swimming, however not all patients can get a working fistula, there is a women where I go who is been on dialysis for 20 years.  She is tiny and has never been able to support a fistula, no problems but she clearly is careful.
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justagirl2325
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« Reply #10 on: January 20, 2016, 08:21:30 AM »

My husband has one - installed for emergency dialysis when he dropped from 22% to 9% in July 2014  and we are still using it (he has a fistula but has stopped using it for now).  He showered with bandages for the first year but now showers all the time (well every second or third day lol) with nothing on it.  No problems.
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kristina
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« Reply #11 on: January 20, 2016, 10:43:07 AM »

Hello, Failing Transplant (sorry about that)...
I have had a tunneled chest-catheter for over one year now and the nephrologist who "installed" it told me at the time,
to safeguard it at all times with my life and never ever let any water touch my important life-line ...
... I do take a shower ever morning (with a mobile shower-head) from the waist down, but above the waist I only use a damp flannel very carefully.
Since I make sure to take the greatest care with it, my tunneled chest-catheter has served me very well for over one year now and I am very clean as well...
Good luck from Kristina. :grouphug;
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kickingandscreaming
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« Reply #12 on: January 20, 2016, 08:43:33 PM »

Getting it wet isn't the only issue.  Moisture is an invitation to infection.  But the other problem is that the artery can develop stenosis from the catheter.  I don't know any more about that and certainly hope that i don't find out the hard way with my own chest cath.  I need to keep it until I can be sure that PD is working, and there is some question about that. 
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Diagnosed with Stage 2 ESRD 2009
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DialysisGoneFOREVER
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« Reply #13 on: January 21, 2016, 10:10:57 AM »

My husband has one installed for emergency dialysis when he dropped from 22% to 9% in July 2014  and we are still using it (he has a fistula but has stopped using it for now).  He showered with bandages for the first year but now showers all the time (well every second or third day lol) with nothing on it.  No problems.

Yeah, I too have showered without the bandage and NOTHING happens. The key is you need to be healthy with no other medical problems besides kidney failure & exercise regularly. There is clearly a lot of paranoia in nephrology. They say don't lift weights with a PD catheter but I did for FOUR years and NOTHING happened! Maybe we need to refer our nephrologists to a psychiatrist!  :rofl;
« Last Edit: January 21, 2016, 10:12:30 AM by FailingTransplantHELP » Logged
DialysisGoneFOREVER
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« Reply #14 on: January 21, 2016, 10:14:08 AM »

My father has refused to get a fiscula since diagnosed.  He has had a tunnel catheter, against the advice of the nephrologist, since he started dialysis in 2011.  He has taken showers with it on, but tries not to get it wet.

I'm not recommending this, but there are people who have one for an extended time.

Wow, your father has had a tunneled neck catheter for almost 5 YEARS when the nephrologists say 90 days?? Has he had to have it replaced since 2011 or had any stenosis, scar tissue buildup, or heart infections?

WOW! 5 years with a tunneled neck catheter must be a national record!

That is correct.  Next month it will be 5 years for him.  There have been no medical issues related to his continued use of it.   I don't recall his having it replaced, but he has had other medical issues and it may have been done during a hospitalization and I overlooked it.  Nevertheless, he has never had a fistula or other access point.
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Heisenburg
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« Reply #15 on: January 28, 2016, 09:46:29 PM »

I'm sure many of you have had the tunneled hemodialysis neck catheter that is under your skin and goes right to your heart. They say you're supposed to have it taken out within 90 days but some people have it a lot longer than that. They say it can cause a buildup of scar tissue and stenosis in the vein and a major risk of infection of the heart. Yet some people have this catheter is 6 months to a year with no problem.

So what's the truth here? What's the longest you can have this neck/heart catheter in WITHOUT causing permanent damage? Also they say you're not supposed to take a shower with this catheter but many people do. So can you take a shower as long as the site is fully healed?

Do you mean permacath?
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DialysisGoneFOREVER
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« Reply #16 on: January 29, 2016, 02:54:43 PM »

Yes, looking at the link below it's also called permacath. It says you can have it up to a year so why do doctors keep saying only 90 days??

https://www.chifranciscan.org/Health-Care-Services/Diagnostic-Imaging-Radiology-Services/Permacath/
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