Good Catheter Stories

[The Lady]

So...

So far every access surgery I've had ended up a failure. My fistula and graft both clotted before I ever used them and the decision has been made, at least for now, that I will be using a catheter permanently.

Now, of course, before this decision all I've ever heard is horror story after horror story about the danger of using a cath. They acted like I was living on Death's doorstep with a ticking timebomb strapped into my chest. I was expected to sprout a deadly infection any second so hurry....HURRY and get a fistula before it kills you!

They've stopped doing that, but I haven't heard anything encouraging about being stuck with just a cath either. I know they would like to force me to try PD again, but my experience with that was very painful. The dwells hurt and the drain/fill was excruciating so I was glad when that catheter failed, leaked and infected and had to go. I am really, really hesitant to go there again.

So, does anyone have any uplifting catheter stories? Have any of you done it long term and have any advice for keeping it as long as possible? I had a new one installed Oct 19, but it's placed wrong and it's coming out Tuesday...if it goes well, I want to do all I can to make it last.

[lmunchkin]

Lady, not all caths are bad, its just that if a germ wants to find anything to "latch" on to, it will undoubtabley be (any) cath.  You could be doing everything in your power to be steril, but others may not!  Are you doing your own D. at home or in-center?  You can't help what others do!  Also, if cath is in the neck, that is a main vein, and any slip up's could be detramental to recepient (sp?).

I personally like the fistula, but not everyone does.  Its just that caths are more prone to infections than the natural fistula. Fistulas are not as restrictive as others.  Yea, they may not be "cute" to look at, but I don't care nothing about that.  I love my husbands fistula and really (not to be rude) don't care what others think about it!!  If you want a cath instead, then do it.  It is your choice and nobody elses.  It is your body and nobody elses.

I certainly won't fault you for having it over a fistula.  There are people on this very site that have perm caths and have no problems at all, but they also know there is risks to anything, even fistulas.

You just do what is comfortable for you, Lady!  Just be sure to be extra clean & I don't think you need to worry!  You might take your temp every now & then if you ever feel sickly.  Temps are a good indicator of infections, but you should be fine!

Hope this helps ease your mind in some way!
Take care & God Bless,
lmunchkin
 

[CebuShan]

I had my catheter for exactly one year to the day. I never had a problem. One time only did they send some blood for cultures because I was running a low grade fever. Turned out totally unrelated. The only things I didn't like was not being able to take a shower normally and I couldn't swim. I put off getting my fistula  until I was ready. I started D at the end of April and didn't get my fistula started until Sept. Didn't even start using it until Feb and had a lot of problems; many times they had to resort to using my catheter. Like I said, mine was only in for a year but I know there are others here on IHD that have had them longer. Best of luck to you!

[cattlekid]

I started D in January of this year with a cath, because there was no time for me to wait for a fistula to develop.  Then I had live donors that were being tested, so I made a bargain with my center that I would go for a fistula only after the last live donor failed testing.  That happened in August.  In August, I also had a staph infection which meant four long days in the hospital getting blood cultures every morning at 5 AM and spending the rest of the day waiting for results.  I had my fistula surgery in Sept. and I am still waiting to start using the fistula - I believe they are going to try this week when I start my NxStage training.

I echo PP's who say to monitor your temp.  It was because of a slightly elevated temp that I took myself to the Urgent Care in August, which led to the hospitalization for staph.  All of the doctors said that it was a good thing I got in when I did because it was relatively uneventful, even though I had to have my cath replaced.

[needlephobic]

still have my cath its been 1 year 9 months only prob is that have to use cathflo every now and then. When I shower I keep the cath out of the flow of the water and yes I take long showers. I get out pat it dry and air dry about a hour then put on another dressing. They are wanting to stick me Tuesday but having second thoughts about it do to my fear. They have done cultures but everything is still good

[Poppylicious]

My Blokey used catheters for eighteen months (interjected with a brief spell on PD which didn't work for him) because he refused to have a fistula.  In those eighteen months he never had any infection of any kind.  His main issues were that his lines clotted lots and he wasn't getting the best clearance. 

[mcclane]

I've had a central line in since april 20ish of this year.  But by wednesday, it will be gone.  So close to 7 months later, the central line will be history.

I've heard the same song and dance from my nurses/doctor that the central line is prone to infection, and the risk outweighs the benefits.  However, in the time i've had it, no issues to report.  It has functioned flawlessly.  If you take the necessary precautions, I'm not saying it won't infect but the chances are minimal.

[rocker]

The best thing I can recommend for a cath is the big Tegaderm (10 x 12cm).  If your center does not use them buy them from Amazon, do NOT buy them at the drug store or medical supply place.  (Our nurse bought a box of 50 at the local medical supply place.  She said with her "50% discount", it was about $140.  We got the same box for about $30 on Amazon.)  We do home hemo, so he changed his own dressing about once a week.  Don't do that unless you're trained, as it takes near-sterile protocol.  If you're in-center, have one with you and have the techs use it when they want to change your dressing.  Sterilize the area well and put the Tegaderm directly over the catheter on the skin.  It has to be removed with care so as not to tug on the cath, but hubby said it leaves no residue to clean like tape does.  Your techs should be trained in this.

Hubby would shower with great care - the entrance was covered with the Tegaderm, and we would wrap the ends with plastic over the gauze, and avoided wetting the area.  When he finished showering, he would take the gauze off and dip the exposed part of the limbs in Except, then cover with clean gauze.

In the hospital they also used a Biopatch around where the cath enters the skin - but the price was about $10 per patch, and we thought that was just too much.

Hubby never had a cath infection, in maybe 2 years on catheters.

[Rerun]

There was a doctor who was on dialysis next to me one time and he was on a catheter with no plan for a fistula.  So, what did he know that we don't know?  So, when pressured to get rid of my cath and start using my fustula, I would point at him and say "when he gets a fistula and uses it then I will".  But, I ended up using mine.  And I moved to another center so I don't know what happened to him.

[Cordelia]

I've had my central line cath for over a year-14 months to be exact. I didn't want a fistula either. The plan was to go straight from  my cath to transplant. Well, that ain't gonna happen now so I'm forced to think of this as long term. ...... I have had nothing but success with my cath and am very nervous about getting rid of it in ways because I've never, ever had an infection....and the cath works/runs very well.

I'm nervous because I'm going into an unknown with the fistula, how well it work, etc once it's matured....

I don't even wear a dressing over my central line, I shower daily and take extremely good care of it, I can't wear a dressing because I suffer from a severe rash if I wear a bandage over it......

I also don't want to do pd.....and they told me, I can't have my cath for years......so thus, the fistula as the next step....

I think everyone is dfifferent, really.  I've often wondered for myself what IF the fistula fails, what next?  I've often wondered if they'll want me to do the pd or if I'd be able to go back to a cath?

The only biggest problem I find with a cath is that I cannot swim, other than that, I like it.

Please, keep us posted, I wish nothing but the best for you        

[aharris2]

Lady,

My brother has had his current catheter for almost 4 years. He has been using the same tunnel for 6 years (the catheter almost fell out at the 2 year point, but they were able to install the new one in the same tunnel.)

He had multiple grafts and multiple failures and he may opt for a graft again in the future. But for now, the catheter works great and has not caused any problems so he's going to keep it.

Alene

[The Lady]

It's not that I don't *want* a fistula...although it doesn't exactly look like a party...it's that the one they put in failed and my vascular surgeon believes any fistula attempted will probably fail and he doesn't want to keep cutting and wasting sites in case something new comes along.

I dialyze at a Freseneus clinic and my Neph had to sign off that I had to use catheters long term because I have no other option. The clinic is certainly very against long term cath use.

I am glad to hear that there has been some good experiences with them. It makes me feel a little more hopeful about my long-term chances.

Thanks for the advice, rocker, but I am extremely allergic to Tegaderm. When I had my graft surgery I actually broke out in boils, hives and it was practically melting my skin off. I have issue with all adhesives. Even my Island dressing gives me rashes which there is nothing I can really do about it.

My luck is both amazing and extremely poor....I'm lucky to be alive several times over, but getting well is a real chore!

[sullidog]

Lady,
Has your surgeon mentioned a graft or a hero cath? The hero devices are pretty new but I have my second graft. My first one clotted after 6 months and this one is a year and 6 months.
The first cath I had lasted until my graft was ready, my second cath got infected and my third we pulled cause I had a fever but it turned out not to be related.

[The Lady]

I've had a graft and it failed before I ever used it.

I know the HERO is being considered, but it is just as prone to clotting as any other kind of graft. I live in Maine and only 3 Hero grafts have ever been done here and all 3 failed.

[lmunchkin]

Lady, I think you will be fine with perm cath long-term.  Doc's wouldnt recommend it if they werent sure you could take care of it.  I have heard of the Hero graph, but had wondered how that was working out.

Sorry you have to go through this stuff!  It is always something with this disease!

Let us know how it goes!  We are here for you,
God Bless,

lmunchkin
 

[Restorer]

I've had my catheter for over a year and a half, and I've had no problems with it. Sometimes they have to reverse the flow because it won't flow the right way, but my Kt/V is always high enough. I'm now finally doing the work to get a fistula made.

[KraigG]

I've had my catheter in my shoulder/neck area for nearly 6 months now. Same with my non-matured fistula.

The catheter has presented no problems, and I shower daily. Of course, I use a hand-held shower head, and don't point the head directly at the catheter, but it still gets wet. I pat it dry afterwards, and at the center, they change the dressing, and clean under the dressing with antibiotic drenched Q Tips. Everything's sterile, of course. I don't go swimming, and have yet to get an infection. My temperature is taken before, during, and after dialysis.

Who's to say you won't get an infection with needles? Some supply place in China decides to not be sterile one day, and everyone's in trouble. Just sayin'.

I like my catheter. No pain, I'm hooked up and unhooked faster than everyone else in the center. I'm gonna keep it.

[PorkBun]

I only had my catheter for about 4 months, and yes - i heard all the warnings and horror stories.  I always wore a t-shirt for fear of dislodging it.  Some times i was in that half sleep/half awake phase and found myself grabbing it, forgetting what it was for a moment.  I'd scare myself to death thinking the thing could just fall out.

Well, first good thing - I never had an infection in it.  Nothing even close.

DRESSING CHANGES - OMG!  They were wonderful!  See, mine itched and since I couldn't really scratch at it, I just had to put up with it.  Well, when they pealed off that tape for the first time - I WAS IN HEAVEN!  IT felt SO GOOD!!!  I told the tech,, I am glad I'm wearing this mask so you can't see what face I just made!

Lastly - when they removed it.  He practically needed a which.  My fear of dislodging it was completely unfounded.  He was pulling on it - and I thought he was about to pull me up off the exam table.  Turns out that thing was in SOLID!  He ended up having to cut into my shoulder to help release it.  It ended up in three pieces.  So next time if i ever need one again, I know not to worry about it so much!

[needlephobic]

Found out something about chest caths at a D center I was touring today. People who have chest caths long term like my self is costing the D centers money according to my source Medicare has a weird law that if a person has a Catha  in for a period of time the D center gets charged for it. So maybe that is why they scare us people with caths.

[cattlekid]

It sure is.  I had a cath for the entire time I was in-center.  Mostly because I had living donors being worked up and I wasn't about to have unnecessary, disfiguring surgery if I had a living donor around the corner.  Once my living donors all crapped out, I decided to get the fistula and then I transferred out to home hemo before the techs at the clinic could start messing with it.

I did have one small infection that kept me in the hospital for a long weekend.  That's it - for a year, I don't think I did too bad.

I know the clinic was getting dinged for me, but I figured the ginormous sums of money they were getting from my private insurance more than made up for it and I made no bones about reminding them that I was private pay whenever they got uppity.   

Found out something about chest caths at a D center I was touring today. People who have chest caths long term like my self is costing the D centers money according to my source Medicare has a weird law that if a person has a Catha  in for a period of time the D center gets charged for it. So maybe that is why they scare us people with caths.

[bansix]

I thought I would never say it, but I miss my Cath. I didn't get the Fistula until 4 months after starting D cause of scheduling conflicts. The whole time they kept urging me on a regular basis to hurry and get a Fistula cause the PermaCath would get infected. SInce I've had the Fistula I've had 4 fistulagrams (most painful thing I've ever had to endure) and two stents put in. My anatomy just doesn't support the Fistula. My entire arm down to my finger is always numb. I keep getting clots. I'm still not used to the needles. The Fistula was supposed to make me feel somewhat normal again, so far that's not the case.
Only draw back with the PermaCath was not being able to swin, which does suck. but I did shower, i would just put a bag over it and tape it to my chest, never had a problem.

[sullidog]

I know what you mean about pulling it out, I was the same way for all 3 of mine and probably the 4th one too.

[Rain]

I had a catheter for 1 years.  I was so glade to get it out.  I had 4-5 infections.  I had to get the catheter removed 3 times due to infections.

And my skin blistered due to the dressings.

[sullidog]

What I meant to say about pulling it out is mine were a b*** to remove.

[natnnnat]

What I meant to say about pulling it out is mine were a b*** to remove. 

Gregory told me a story once about some guy who was in a bed at the dialysis ward while Gregory was in a chair there.  They had three beds in the dialysis ward at the hospital he went to.  This guy was on PD, he must have been having trouble with it, and so he was in the ward in a bed there. Anyway.  So Gregory tells me the guy was in a bad way, upset, sick, and maybe he was a bit off his rocker too, because suddenly Gregory observed that he wrapped his PD catheter around his hand and pulled it out of his belly.  Gregory didn't see him again after that.