Another unfortunate experience............

[Nan]

Thank you Rerun for checking up on me. My chest catheter fell out for the third time since June 1st of this year. And for some reason...I had a hard time after surgery with being sick....I threw up at dialysis...and I threw up at home...it took me pretty much the entire weekend of sleeping to re coup.  The nurse said my fistula...my poor left arm has also had three surgeries since June 1st also....has a "thrill" but the vein seems small, so that it will not be ready for months.  The doctor's asked if I was pulling these catheters out myself...I asked if there were refunds or warrenties?!  Do you guys think this is a little abnormal to have three catheters in such a short time? I just want to start planning on the holidays...with Thanksgiving just days away, I love having all of my family here, but this is my first big holiday since, the floor fell out below my feet...and I worry ...will it be a good day or a bad day?

[angela515]

I had a problem with my catheters falling out of my chest also, and so after thw 2nd time when my dr put in the next cath he stitched around it on the inside and outside as to hold it in place and give it extra support. I dont know if it would of fallen out again or not as I decided to change to PD b/c they wanted to put an access in my thigh since my arms are no longer able to get a working access.

[stauffenberg]

I had a chest catheter from April, 1997 to August, 2005, and though it was replaced three times for infection, it never once fell out.  Perhaps this was because it was standard practice at my dialysis center that all chest catheters always be stitched in place.  Generally, catheters are much preferable to fistulas, since 1) you can move both arms freely during dialysis; 2) there is no ugly scarring of the body; 3) there is no painful needling; 4) there is no need for elaborate surgery to insert it; 5) there is no waiting time for it to mature before it can be used; 6) there is no chance of having to return for repeat surgeries because of all the varioius problems that can occur with a fistula.  Conservative nephrologists think that catheters will always be getting infected, but this is simply not true, as long as the patient takes care of it by 1) making sure it does not get wet while taking a bath; 2) wearing a mask when being attached to the machine and taken off from the machine.

[kitkatz]

I hated having the catheter in the chest.  It hurt and I felt like I could not move properly.  And when one fell out I just about panicked!

[Fighter]

Generally, catheters are much preferable to fistulas

That's the first time I hear that! Everyone from nurses to doctors to patients in my hospital have always claimed the opposite, mostly because you can't get the same quality of dialysis with a catheter as you can with a fistula. They do everything they can to limit catheter time for patients, it's considered an emergency solution.

As far as I'm concerned, I had a catheter for two months and I HATED it. You do have both hands free during dialysis, but that's the only plus point I can see. For one thing you have tubes sticking out of your body 24/7, in my case in the neck... brr... it limits your freedom, you can't take showers if you don't happen to be a professional contorsionist, it's embarrassing and you have to hide it and, most of all, it's a constant reminder that you have kidney disease.

When my fistula became mature and they removed the catheter, I felt so liberated that I jumped and danced in the unit! The fistula has been going strong for nearly two years. I hope I never have to be a catheter slave again!

[Zach]

stauffenberg tends to take the path less traveled.  And maybe more risky.

[angela515]

I had a chest catheter from April, 1997 to August, 2005, and though it was replaced three times for infection, it never once fell out.  Perhaps this was because it was standard practice at my dialysis center that all chest catheters always be stitched in place.  Generally, catheters are much preferable to fistulas, since 1) you can move both arms freely during dialysis; 2) there is no ugly scarring of the body; 3) there is no painful needling; 4) there is no need for elaborate surgery to insert it; 5) there is no waiting time for it to mature before it can be used; 6) there is no chance of having to return for repeat surgeries because of all the varioius problems that can occur with a fistula.  Conservative nephrologists think that catheters will always be getting infected, but this is simply not true, as long as the patient takes care of it by 1) making sure it does not get wet while taking a bath; 2) wearing a mask when being attached to the machine and taken off from the machine.

I'm not sure where you get your information from, but it sounds like personal opinion, not fact... since it is a fact that a fistula, or graft access is more preferred thn having a cathte. Catheter's are still prone to infection regardless if you do what your supposed to do or not..  also, you have a better chance of getting better dialysis with a fistula or graft than a catheter. yes a catheter can still get great dialysis and sometimes the same or better than a fistula or graft, but for the most part they do not. I havent met a dr yet that would rather you have a catheter over a better access...

[alrightstill]

No one attack me, please, I actually got forced out of another dialysis community online for having these opinions, but I'm going against the majority vote here. 

I too prefer a catheter over a fistula or a graft.   I've never had an arm access, but from the first time I saw Steel Magnolias, and Julia Roberts showed her arm -- I did NOT want that.  Maybe it's really vanity.  I'm 26, and unless I tell them, most of my friends do not know I'm even sick.  With an arm access, it's visible to the world, with a catheter, besides being depressed that I can't go swimming in the summers or wear hoochie outfits (not that I'd really want to dress hoochie anyway, haha) - everything is OK.  I've been lucky to be getting amazing dialysis with it (knock on wood, haven't had an infection in over a year), and only once had one slipped out on me.  The one I have in now I've had since Sept 05, and since '01 have had only 2 (not including the one I have now) replaced. 

That's so vain of me to even admit, that the reason I don't want it is because of the way it looks, but it's true..    As long as I'm getting good dialysis now, why eff with it?

[angela515]

No one attack me, please, I actually got forced out of another dialysis community online for having these opinions, but I'm going against the majority vote here. 

I too prefer a catheter over a fistula or a graft.   I've never had an arm access, but from the first time I saw Steel Magnolias, and Julia Roberts showed her arm -- I did NOT want that.  Maybe it's really vanity.  I'm 26, and unless I tell them, most of my friends do not know I'm even sick.  With an arm access, it's visible to the world, with a catheter, besides being depressed that I can't go swimming in the summers or wear hoochie outfits (not that I'd really want to dress hoochie anyway, haha) - everything is OK.  I've been lucky to be getting amazing dialysis with it (knock on wood, haven't had an infection in over a year), and only once had one slipped out on me.  The one I have in now I've had since Sept 05, and since '01 have had only 2 (not including the one I have now) replaced. 

That's so vain of me to even admit, that the reason I don't want it is because of the way it looks, but it's true..    As long as I'm getting good dialysis now, why eff with it?

You PREFER a cath, which is fine... everyone has their own thing they like or prefer.. not everyone prefers the same thing. However, the point I was making was doctors PREFER an access like a graft or fistula over a cath for many reasons... however, in some cases a cath is the only option.. and then there prefrence really doesn't matter.. 

I'm also young, 27, but I been very sick since I was 12 and have had over 40 surgeries... scars do not bother me much. Also like you, nobody knows i'm sick unless I tell them...even then most people don't evn know what dialysis is or the severity of it.

Someone asked me the other day why I was complaining about phosphorus, so i told them because I am on dialysis so I have to limit how much I have per day. They were like, oh ok.. but kinda looked confused about it. Then a few days later they asked me if I would spend the night with them, I said well I can't tonight I need to hook up to my machine but maybe another time when i know in advance so i can be prepared and such. They said, well just don't do it and come over instead... I was like, I can't just not do it, they then said "You just don't wanna come over, its not like you will die if you dont do that."... I said, your right, I wont die today for missing one day, but you do know I need dialysis in order to live, or I will indeed die, right? They looked shocked and said no, I didnt know that... so I had to explain what dialysis was and everything... ahhh...

In short tho... you gotta do whats best for you and whats right for you... and if thats what working, so be it. However, I would hope you would choose to have something scar you in order to live out the remainder of your life if it came down to it and the cath wasn't working for you anymore. 

[alrightstill]

Oh yes, yes.  I know.  I have numerous scars.  I've been in the ESRD game since I was 12 as well.   I suppose all those scars remain discreet though, considering they could be covered with clothing.

Thanks for not judging me (well, maybe you did.. but thanks for not showing it, haha).  I know it's a ridiculous way to think.  It's more than just a scar from a graft or fistula though, no?  It's a visual deformation of the arm almost.. 

Anyway, I see your point.  And I agree, you're right.  A graft or fistula is the preferred way for dialysis.  I also have extremely tiny veins, and have been told this could cause problems too.  Of course, if it came to it, I would cave in and get an arm access.  I'm hoping a kidney call will come before then.. I've been on 4 different lists since 2001!   

[susie q]

I understand both sides of this issue..  I have had a catheter since Feb 2004.. never fell out.. no infections.. balked at the idea of a fistula for several reasons... most of which others have posted.
In June 2005 I decided to try a fistula.. mainly for swimming purposes ... well , the first attempt did not develop so a revision was done on the 1st day of Spring this year.. it developed slowly and would blow a lot when starting use.. it is getting better now and I am looking forward to getting the catheter taken out.  BUT .. the big thing is.. you can't see my fistula.. all I have to show are a couple of fine scars from the surgery and a couple of scabs where the needles go.  no big deal.. 

[DeLana]

Thank you Rerun for checking up on me. My chest catheter fell out for the third time since June 1st of this year. And for some reason...I had a hard time after surgery with being sick....I threw up at dialysis...and I threw up at home...it took me pretty much the entire weekend of sleeping to re coup.  The nurse said my fistula...my poor left arm has also had three surgeries since June 1st also....has a "thrill" but the vein seems small, so that it will not be ready for months.  The doctor's asked if I was pulling these catheters out myself...I asked if there were refunds or warrenties?!  Do you guys think this is a little abnormal to have three catheters in such a short time? I just want to start planning on the holidays...with Thanksgiving just days away, I love having all of my family here, but this is my first big holiday since, the floor fell out below my feet...and I worry ...will it be a good day or a bad day?

All new perm caths should be stitched in place - are your nurses cutting the stitches?  Some do this, but it should never be done and if so (i.e., if a pt complains about pain due to the stitches) only after several weeks when scarring in the tissue should help to hold the cath in place.  They should get a doctor's order for this, but I have seen some do it routinely and without an order 

Good luck, hope this doesn't happen to you again - it shouldn't, I'm sure your surgeon has taken special care to secure the cath in place.

DeLana  

P.S.  You might consider a second opinion (but I hope it won't be necessary!) - not all vascular surgeons or interventional radiologists are equally skilled at placing catheters.

[DeLana]

No one attack me, please, I actually got forced out of another dialysis community online for having these opinions, but I'm going against the majority vote here. 

I too prefer a catheter over a fistula or a graft.   I've never had an arm access, but from the first time I saw Steel Magnolias, and Julia Roberts showed her arm -- I did NOT want that.  Maybe it's really vanity.  I'm 26, and unless I tell them, most of my friends do not know I'm even sick.  With an arm access, it's visible to the world, with a catheter, besides being depressed that I can't go swimming in the summers or wear hoochie outfits (not that I'd really want to dress hoochie anyway, haha) - everything is OK.  I've been lucky to be getting amazing dialysis with it (knock on wood, haven't had an infection in over a year), and only once had one slipped out on me.  The one I have in now I've had since Sept 05, and since '01 have had only 2 (not including the one I have now) replaced. 

That's so vain of me to even admit, that the reason I don't want it is because of the way it looks, but it's true..    As long as I'm getting good dialysis now, why eff with it?

No attack, just for general info, the ideal long term access for hemodialysis is a fistula (and next best a graft).  Perm caths should only be used in the short term, but I have seen patients who - for various reasons, including personal preference - had them for the long term and many did quite well with them (Tesios are preferable in this case).

I can see your point, especially if you expect to receive a transplant as you do, and can live with the limitations of a catheter and the ever present risk of infection.  It's not like you can't get a peripheral access later if you choose to.

Good luck!

DeLana      

[Fighter]

I understand both sides of this issue..  I have had a catheter since Feb 2004.. never fell out.. no infections.. balked at the idea of a fistula for several reasons... most of which others have posted.
In June 2005 I decided to try a fistula.. mainly for swimming purposes ... well , the first attempt did not develop so a revision was done on the 1st day of Spring this year.. it developed slowly and would blow a lot when starting use.. it is getting better now and I am looking forward to getting the catheter taken out.  BUT .. the big thing is.. you can't see my fistula.. all I have to show are a couple of fine scars from the surgery and a couple of scabs where the needles go.  no big deal.. 

Same here, my arm is not at all deformed by the fistula. I do have a pretty ugly scar on my wrist because they had to cut the wound back open to repair my fistula when it failed after just one week, but since then it has been smooth sailing. The fistula has really contributed to my quality of life big time.

[stauffenberg]

When people say that you cannot get good dialysis from a catheter, they are confusing temporary neck lines with permanent chest catheters, which are two very different things.  I had a pump speed of 450 with my chest catheter, and, as is always the case with catheters as opposed to fistulas, there was no problem ever with recirculation.

[angela515]

When people say that you cannot get good dialysis from a catheter, they are confusing temporary neck lines with permanent chest catheters, which are two very different things.  I had a pump speed of 450 with my chest catheter, and, as is always the case with catheters as opposed to fistulas, there was no problem ever with recirculation.

As I said before.... any kind of catheter has more risk of infection than a fistula or graft

[kitkatz]

Can you explain the difference between a permanent chest catheter and a temporary one?

[angela515]

Oh yes, yes.  I know.  I have numerous scars.  I've been in the ESRD game since I was 12 as well.   I suppose all those scars remain discreet though, considering they could be covered with clothing.

Thanks for not judging me (well, maybe you did.. but thanks for not showing it, haha).  I know it's a ridiculous way to think.  It's more than just a scar from a graft or fistula though, no?  It's a visual deformation of the arm almost.. 

Anyway, I see your point.  And I agree, you're right.  A graft or fistula is the preferred way for dialysis.  I also have extremely tiny veins, and have been told this could cause problems too.  Of course, if it came to it, I would cave in and get an arm access.  I'm hoping a kidney call will come before then.. I've been on 4 different lists since 2001!   

I think your making a good choice for your situation, as far as your viens are also small and if you also been sick for so long you probably have also been poked a lot with IV's and/or blood draws.  Those alone scar and ruin our viens over time... which in turn makes it hard to get a good working access for dialysis. Luckily for me I heard about PD and can do it, I dunno how long I could handle hemo, because for me hemo was horrible... anyways... I hope you get a call soon as you been waiting for awhile now... wow... I am complaining and I have only been waiting on the list 2 yrs.. 

[DeLana]

Can you explain the difference between a permanent chest catheter and a temporary one?

"Permanent catheter" or perm cath, which is how we casually call them, is an unfortunate term for a central venous catheter (CVC), which is intended to be a temporary access for hemodialysis.  In reality, however, for various reasons, some patients will have a CVC as their primary or only access for a long time - however, it's never supposed to be permanent. 

For long term use, the Tesio catheter - which has two separate, tunnelled lines and is therefore less likely to have a major problem with recirulation (although this certainly can and does occur with catheters) is preferred.

HTH.

DeLana 

[stauffenberg]

A neck line is a very narrow tube, usually inserted in the neck or femoral artery, and is just intended to be used for a week or so, typically in situations of acute dialysis requirement, such as in a patient in a crushing injury, where the kidneys fail to function only for a short while.  They are very prone to infection and usually provide inadequate dialysis.

A permanent chest catheter is inserted near the heart and usually provides a dialysis which is just as good as via a fistula.  Because old-fashioned perm caths were prone to infection, clotting, and a variety of other problems, there has developed a general but INACCURATE perception among most nephrologists that these cannot safely be used long-term.  But in fact the newer ones are quire safe.  I had mine for almost 10 years and only had problems with it when I either got it wet by accident or breathed on it while the line was open, I had a cold, and was not wearing a mask.  I am sure that if I had not been careless on those occasions I could have kept the same catheter for a decade.  Even replacing the catheter was a trivial and painless procedure, since they just removed the old one and re-inserted a new one over a guide wire so that the same tunnel through the chest could be used.  In all it just took a few minutes and I was ready to go agaiin.  There was no elaborate surgery and long waiting for the access to mature, as with a fistula.

[Inara]

We've had great results with the newer Palindrome catheters.  I can't believe the blood flow rates we get!

[DeLana]

We've had great results with the newer Palindrome catheters.  I can't believe the blood flow rates we get!

I have to admit I'm not up-to-date on this since I've been away from dialysis for almost 2 years; I have never heard of these Palindrome caths, but it sure is great if they have come up with a better product.  Are they widely used now?

I do realize that some patients have no other option, or choose to have a cath as a permanent access, and some are very happy with it and do well.  I had one long term pt (on dialysis for some 25 years) who chose to stay with her Tesio; it only got infected once in 5 years and had great Qb (high pressures though, but her Kt/V was awesome - probably due to her small size). 

It's just usually not the best choice for long term tx.

DeLana 

[Inara]

I have to admit I'm not up-to-date on this since I've been away from dialysis for almost 2 years; I have never heard of these Palindrome caths, but it sure is great if they have come up with a better product.  Are they widely used now?

They started using them almost exclusively here a year or so ago at our local hospital.  I've not seen them put in an Ash-Split since they discovered them.  In addition to the good BFR's, they don't require activase as often and usually don't recirculate if you have to reverse the lines.  You'll love them! 

PS--Please come work with me!  I think we'd get along great! 

[meadowlandsnj]

No one attack me, please, I actually got forced out of another dialysis community online for having these opinions, but I'm going against the majority vote here. 

I too prefer a catheter over a fistula or a graft.   I've never had an arm access, but from the first time I saw Steel Magnolias, and Julia Roberts showed her arm -- I did NOT want that.  Maybe it's really vanity.  I'm 26, and unless I tell them, most of my friends do not know I'm even sick.  With an arm access, it's visible to the world, with a catheter, besides being depressed that I can't go swimming in the summers or wear hoochie outfits (not that I'd really want to dress hoochie anyway, haha) - everything is OK.  I've been lucky to be getting amazing dialysis with it (knock on wood, haven't had an infection in over a year), and only once had one slipped out on me.  The one I have in now I've had since Sept 05, and since '01 have had only 2 (not including the one I have now) replaced. 

That's so vain of me to even admit, that the reason I don't want it is because of the way it looks, but it's true..    As long as I'm getting good dialysis now, why eff with it?

I mjst be the only person in the free world who hasn't seen this movie but.......what were her scars from? 
Anyway--I have lots of scars.  They don't bother me and if they bother you well then that's too bad.  Look away. 
I know we are judged by our outside appearances in this world.  I've seen people burned by fire, I worked with a man who was horrible scarred by a car fire.  He was a delivery man so he dealt with all kinds of stares and looks from people.  He told me once that if someone is honest with him and asks him what happened he's glad to tell them.  It difuses the tension and puts them both at ease.  Just don't be rude and go "eeeewwww" or point. 
In my own sick way I like scars.  It shows me that the person went through some bad experiences yet they have the courage to show the world that they're still here and they count as a person. 

"A really strong woman accepts the war she went through and is ennobled by her scars."

Carly Simon

[angela515]

No one attack me, please, I actually got forced out of another dialysis community online for having these opinions, but I'm going against the majority vote here. 

I too prefer a catheter over a fistula or a graft.   I've never had an arm access, but from the first time I saw Steel Magnolias, and Julia Roberts showed her arm -- I did NOT want that.  Maybe it's really vanity.  I'm 26, and unless I tell them, most of my friends do not know I'm even sick.  With an arm access, it's visible to the world, with a catheter, besides being depressed that I can't go swimming in the summers or wear hoochie outfits (not that I'd really want to dress hoochie anyway, haha) - everything is OK.  I've been lucky to be getting amazing dialysis with it (knock on wood, haven't had an infection in over a year), and only once had one slipped out on me.  The one I have in now I've had since Sept 05, and since '01 have had only 2 (not including the one I have now) replaced. 

That's so vain of me to even admit, that the reason I don't want it is because of the way it looks, but it's true..    As long as I'm getting good dialysis now, why eff with it?

I mjst be the only person in the free world who hasn't seen this movie but.......what were her scars from? 
Anyway--I have lots of scars.  They don't bother me and if they bother you well then that's too bad.  Look away. 
I know we are judged by our outside appearances in this world.  I've seen people burned by fire, I worked with a man who was horrible scarred by a car fire.  He was a delivery man so he dealt with all kinds of stares and looks from people.  He told me once that if someone is honest with him and asks him what happened he's glad to tell them.  It difuses the tension and puts them both at ease.  Just don't be rude and go "eeeewwww" or point. 
In my own sick way I like scars.  It shows me that the person went through some bad experiences yet they have the courage to show the world that they're still here and they count as a person. 

"A really strong woman accepts the war she went through and is ennobled by her scars."

Carly Simon

Well said.