I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: thegrammalady on April 22, 2008, 04:33:53 PM
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finally after almost 3 years the perma-cath is out! now mind you i haven't actually had one for three years, i've had 4. i'd almost decided i was born with it. anyway it's gone and i'm jumping for joy :yahoo; :yahoo; :yahoo;
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:yahoo; :yahoo; :yahoo; :yahoo;
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Yay!! Must feel so good! :bandance;
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Getting a catheter out is the best thing in the world! I remember when I was completely catheter-less for the first time in five years and able to take a real shower. Oh man, that was the best shower ever in the history of the universe. Congrats!
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:yahoo; :bandance;
Yipee!
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Quick! Take that long awaited shower!
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Good for you Sue, glad you will have a wee bit more freedom. :grouphug;
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Yipee :bandance; :bandance; time to get wet.
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Yea!!! I remember that feeling - man that is a long time!! :bandance;
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:yahoo; :yahoo; :yahoo; I sure can relate. I'm glad you're cath-free now.
Adam
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Go swimming! Just jump into a pool and be free of tubes. Congrats!!!
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Very happy to read you are cath-free!
Enjoy your shower! :clap;
Anne
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Go swimming! Just jump into a pool and be free of tubes. Congrats!!!
That is my plan too for when I get all these damn tubes out of me! I can't wait to go to the beach in La Jolla. ;)
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Wonderful, mine was only in for three month, and I went nuts without a shower.
I tried the catheter covers called CD-100 several time, but every other time it didn't
work and the catheter would get wet.
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Oh yeah Oh yeah Oh yeah. Like I always say...it really is those little things that make the big difference. :2thumbsup; :clap; :bandance;
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If you were not on dialysis and someone told you that in order to take showers rather than baths you would have to endure pencil-thick, steel needles being poked three times a week into a giant, artificially created vein-artery combination surgically carved into your arm, forcing you to put clamps on your arm to stop the massive bleeding, plus freaking everyone out with its horrible, permanent disfigurement of your arm, and in addition, you would not be able to move your fistula arm freely for 12 hours a week, and on top of all that, you would have to endure painful and repeated fistulagrams, as well as deal with the fact that the fistula would break down eventually and you would then require more surgical disfigurement to repair it or create a new one, I think you would prefer bathing.
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However, for those of us on dialysis, our reality is not the same as that of someone who isn't. There's nothing wrong with celebrating something small like having a shower since our wish to be free of ESRD is not actually possible. None of us would be so stupid as to choose ESRD in order to take showers. That's not the point. Just because we can't have it all doesn't mean we can't appreciate what little things we can have.
But your description does paint a powerful picture (`a la Hieronymus Bosch) of despair that leaves me thinking I must surely be delusional when I feel grateful for my disfigurement. There is in reality no such thing as truth, only perception. I miss what I've lost, cherish what I've got left and love that I still feel joy.
Stauff, I read your description to my husband and we both had a good laugh when he turned to me and said "So, my little Frankenstein monster how's the buzzing been today?" :rofl; :rofl;
Life's way too serious to be taken too seriously.
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However, for those of us on dialysis, our reality is not the same as that of someone who isn't. There's nothing wrong with celebrating something small like having a shower since our wish to be free of ESRD is not actually possible. None of us would be so stupid as to choose ESRD in order to take showers. That's not the point. Just because we can't have it all doesn't mean we can't appreciate what little things we can have.
But your description does paint a powerful picture (`a la Hieronymus Bosch) of despair that leaves me thinking I must surely be delusional when I feel grateful for my disfigurement. There is in reality no such thing as truth, only perception. I miss what I've lost, cherish what I've got left and love that I still feel joy.
Stauff, I read your description to my husband and we both had a good laugh when he turned to me and said "So, my little Frankenstein monster how's the buzzing been today?" :rofl; :rofl;
Life's way too serious to be taken too seriously.
LOL, this is a very good response. I very rarely take anything too seriously. Thanks, monrein! :beer1;
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Monrein, I'm of course not saying anything as absurd as that it would be preferable to be in endstage renal disease so that one could take a shower! I was saying that between having a catheter and thus avoiding all the unpleasantries of dealing with a fistula, and having a fistula so that one could have a shower instead of having to take baths all the time, the catheter would be infinitely preferable. The advantages of a catheter over a fistula are enormous, as my original post indicates. I can never understand why people think they are gaining something by getting rid of their catheter, their only access to pain-free, trouble-free, convenient dialysis.
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There is a bigger problem with catheters than having a fistula.
Biggest reasons being that poor dialysis is achieved with them and high rate of life threatening infections.
This poor dialysis from catheters leads to deterioration in patients that are on them long term.
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Problem with catheters is they are visible and they can create really bad infections that travel to the heart.
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Stauffenberg, I did understand the overall point of your post but once again our experiences of things are so very subjective. In addition to BigSky's point about the risk of infections and often poor dialysis, I for one far prefer having and using a fistula than a catheter. I've had both and I hated the catheter. It itched, got in my way ,made me worry and I was beyond thrilled to see it go. The short-term is one thing but longer than a couple of months..no..for me personally. I stuck myself in the fistula for 5 consecutive years, did not find it all that painful and felt free of dialysis when not on the machine. This is not to say that I think everyone has had or will have the same experience but I really do not consider the catheter remotely preferable, let alone "infinitely preferable" to the fistula nor do I see the "enormous advantages". I sympathize with the fact that for you it is a brutally disfiguring and horrible beastly thing but for me it is not. I choose to love the sound it makes, I like its thrill and that's just the way I prefer to bend,twist and see my reality. Until I get a transplant, it will hopefully be a friendly beast that serves me well.
Just a different set of lenses I suppose.
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oh Congrats!!!!!
I can remember the day mine came out.... first I scratched for an hour and then I jumped in the shower and cried!!!!
Awesome!
Kim
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I had a central line catheter for eight years and my typical pump speed was 450 rpm. I tested it once and found it could go up to 520 rpm without pulling, but the nurses advised me against that because such a high speed would create a danger of recirculation, which does not usually occur with catheters.
As for infections, I had three in total, in every case because I or a nurse did something wrong, like splashing water on it in the bathtub or breathing on it without a mask. I never had an incident of infection after the nurses and I agreed always to mask up before opening the catheter. The infections were very simple to handle, and all two of them required was a removal of the old tubing and a re-insertion of new tubing over a guide wire, which took about a half hour and was completely painless. The third infection did not require even that much response, and went away with a course of anti-biotics.
Generally, everything bad you will hear about catheters is based on out-dated information about the generation of catheters phased out at the beginning of the 1990s. Even many nephrologists are victim to these myths arising from the historical past.
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Marvin has had every type of dialysis access known to man -- 14 perm caths, 2 fistulas, 4 grafts, 2 Tenckhoffs (for PD), and one temporary in the groin. He said he would rather -- much, much, much, much, much, much rather -- have a fistula over the perm cath. And, he took showers and went swimming (in our pool, so we knew the water was treated correctly) when he had his perm caths! (It can be done if you are extra careful and thoroughly clean the exit site after showering or swimming.) Marvin never had an major problems with his perm caths (except the one that FELL out) -- like infections, etc., and he didn't "hate" them, but he said he still much prefers his fistula. The fistula doesn't protrude and/or dangle from the body and has less chance of infection. Also, the fistula is "all" Marvin (his vein and his artery tied together), whereas the perm cath is a foreign object in the body.
Stauff, I read your description to my husband and we both had a good laugh when he turned to me and said "So, my little Frankenstein monster how's the buzzing been today?" :rofl; :rofl;
Monrein, this is so funny. Marvin calls his surgeon (the one who has operated on him 20 or so times in the last 13 years and has also saved his life on several occasions) "Dr. Frankenstein." Marvin told the surgeon he calls him this because this one particular surgeon keeps "piecing" him back together. So, the surgeon said if he was "Dr. Frankenstein" that that must make Marvin his monster! :rofl; :rofl;
And, stauffenberg, there is NOTHING -- absolute nothing -- "horrible" or "disfiguring" about Marvin's fistula arm. It is the most beautiful arm and fistula in the world; Marvin's proud of it, and I think it's simply magic! To us, there's nothing "unpleasant" or "freaky" about it. I guess it's a matter of perspective and self-acceptance.
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So glad you are free from your permacath. :2thumbsup;
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I had my permcath removed after my transplant and now there is no trace on my body that I was ever on dialysis. The same can't be said about a fistula. Which is creepier, having a massive sausage sprouting out of your arm buzzing all the time like a beehive, or having a short stretch of tubing invisibly tucked under your shirt?
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Stauffenberg, your delicious descriptions do make me giggle and are fodder my husband's pet-names-for-me-machine. I can hear him now every morning "get that massive sprouting sausage arm out of bed, you wee monster you". And I thought "the short, stubby one" (I'm only 5'2") was a touch unflattering. And to think that like so many women I've spent years coming to terms with my body image.
My girlfriends and I have other jokes about the incessant buzzing but this is a family site so we'll leave it there. Buzzing off now. Ciao.
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I had my permcath removed after my transplant and now there is no trace on my body that I was ever on dialysis. The same can't be said about a fistula. Which is creepier, having a massive sausage sprouting out of your arm buzzing all the time like a beehive, or having a short stretch of tubing invisibly tucked under your shirt?
I love Sausage and can't wait for Otto's fistula to mature and his Buzz to put me to sleep bbzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz
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I had my permcath removed after my transplant and now there is no trace on my body that I was ever on dialysis. The same can't be said about a fistula.
No trace on your body that you were ever on dialysis, stauffenberg? Surely, upon close inspection, there is a small scar left where your perm cath was -- even you couldn't be that perfect :sarcasm; !
Marvin's scars (all 42 of them) are his testament that he was (and still is) on dialysis. This, we feel, makes him a survivor, and he's certainly proud of the fact that he has survived ESRD, dialysis, transplantation, transplantation failure, and a second round of dialysis. His "survivor" scars make him part of the band of brothers and sisters who have met ESRD head-on and tackled it ("survived" it, if you will) with dignity, and perserverance, and acceptance. By accepting it and not letting vanity about his physical body occlude his perception of himself as a man or as a person, he has joined the ranks of those who can rise above a few outward scars to achieve a beautiful "wholeness" of body and spirit. Marvin could never -- and would never -- forget that he has survived these last 13 years as a dialysis patient; to deny that fact would be like denying a part of who he is and what he has conquered. I suspect that those who feel otherwise about their dialysis experience carry internal scars on their souls that will never heal. How sad that must be -- and how glad I am that my husband is not like that!
Which is creepier, having a massive sausage sprouting out of your arm buzzing all the time like a beehive, or having a short stretch of tubing invisibly tucked under your shirt?
But, also ponder this...which is sicker -- a man with "a massive sausage" sprouting out of his arm which, by the way, DAILY saves and extends his life ... or a man with a bitter, negative, sad disposition and attitude which separates him from his fellowman and makes his words totally ineffective? (As for me, I'll take the "sausage" man any day!)
...but, alas, I have broken one of my grandmother's strictest warnings. My late grandmother (God rest her soul), in her sage-like role, always warned me, "It is never good for a sane man/woman to argue with a fool. People observing the argument will have a tough time deciding which is the fool." With that, I think I'll shut up and go and snuggle in the bed with my "creepy sausage-armed" husband :rofl;.
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Marvin wants to take a poll...if he eats sausage in the morning for breakfast, will this make him a cannibal? What do you all think -- yes or no?
:rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl;
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I had a central line catheter for eight years and my typical pump speed was 450 rpm. I tested it once and found it could go up to 520 rpm without pulling, but the nurses advised me against that because such a high speed would create a danger of recirculation, which does not usually occur with catheters.
From what I have read recirculation ranges from 2-25% depending on length of the catheter and the fact that inlet and outlet of lines are usually close to each other in catheters. Not to mention the vast majority of people I have seen with central lines have had to have lines switched at one point or another to get them to run which increases the probability of recirculation.
It may have worked for you, but from the vast majority of people I have seen over the years, it does not work.
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Re-circulation is a problem for fistulas as well. But to summarize, just consider all the advantages of the catheter taken together:
1) Absolutely no pain on being hooked up to the machine or taken off.
2) Zero danger of infiltration.
3) Absolute freedom of movement of both arms and hands during dialysis.
4) No robbing of circulation from the arms or hands.
5) No problem of the fistula access deteriorating over time.
6) No painful fistulagrams.
7) No need for elaborate surgery to construct the access, but instead just a half hour procedure.
8) No waiting time to use the new access, instead of all that time lost waiting for it to mature and exercising to make it work.
9) No permanent disfigurement of the body.
10) Minimal disfigurement of the body compared to the fistula while it is still in place.
11) No worry about the access eventually breaking down and having to be re-built in an elaborate procedure. If anything goes wrong, the catheter can be replaced over a guide wire in a few minutes.
12) Generally better pump speeds (ca. 450) over the entire lifespan of the access, rather than having to worry about gradually decreasing pump speeds over the limited lifespan of the fistula.
13) No possibility of failure of the catheter to work after insertion, as happens with some fistulas.
While I agree that everyone's tastes are different, even those who for some reason I can't understand prefer a fistula should not be cheering wildly over having the catheter removed, as though it had no advantages at all.
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But Stauff, we're cheering WITH someone who was "jumping for joy" at getting rid of it, not cheering wildly over some abstract concept. By exactly the same token, if you had posted about your dread of a fistula or feeling awful about how it looked, I and others I'm sure, could sympathize with your strong feelings about it without telling you how misguided and just plain wrong you are . I celebrate all the time with people who are themselves happy about things I'd never even want for myself but I'm happy for them because it's what they feel comfortable with or want or think they want. No skin off my nose.
Some people like PD, I don't (never actually tried it but my point remains the same). Some people can't tolerate even the thought of hemo. No-one is wrong here.
I'm glad that you don't have to bear the visible evidence of your dialysis in the form of a fistula, I hope your transplant works forever and that you continue to feel well. I'm also glad that we have options for dialysis since we can't opt out of the need for that. However, nobody but nobody needs to be told that they are hideous, monstrous, disfigured, bulging or otherwise imperfect.
Is it your view that doctors recommend fistulas because they despise us and want to torture us, given your view that they are so inferior to catheters?
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While I agree that everyone's tastes are different, even those who for some reason I can't understand prefer a fistula should not be cheering wildly over having the catheter removed, as though it had no advantages at all.
But, I think you missed several important points, stauffenberg. First, I was "cheering wildly" because the grammalady was so happy to be rid of the perm caths (three years total). She was happy, and almost all of us were happy for her, too. Second thing I think you missed -- I didn't say that the perm cath had NO advantages at all; rather, I said Marvin preferred the fistula because, for him, it has MORE advantages than the perm cath. There's a big difference between these two statements.
However, nobody but nobody needs to be told that they are hideous, monstrous, disfigured, bulging or otherwise imperfect.
This is what got me about stauff's posts, monrein!
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Way to go grammalady, who knew that your feel-good moment could spark all this passionate tying? :guitar:
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What I am criticizing is just the apparent assumption that a fistula is so clearly superior to a catheter as dialysis access that cheering wildly over removal of the catheter makes objective sense, as though the superiority of fistulas were that decisive, which is it not. Everything is not just a matter of relative perception, but things can be objectively evaluated (doubters can check Socrates' dialogues with Parmenides on that point!), and I don't see anyone listing 13 advantages of fistulas over catheters.
Although one poster (who shall remain nameless) inappropriately stooped to criticizing me personally in this series of messages, which I take as grossly out of keeping with what we do here, I did criticize the way fistulas look in general, but I never directed my comments against anyone in particular, which would be entirely wrong. There is no way to compare fistulas and catheters objectively without taking into account the way they look, but as long as this is stated as a characteristic of the form of dialysis access, and not of any particular person, I feel it should not count as a personal insult. Fistulas look extremely different from one person to another, so for any particular person, the general criticism about fistulas' appearance might not apply.
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The first time I saw a 'sausage arm' in a woman who was on hemo-dialysis, I nearly gasped. I was horrified and I felt for her, wondering how she dealt with the reactions of those who'd never knew such a thing existed, for those who couldn't help but feeling shocked, and for those that wondered what was wrong with her.
Several months later, I observed a tube sticking out of my partner's neck. As time went on, I had the experience of placing my hand on the buzz of a fistula. That made me step back. A few months later, I saw the tube hanging from his gut.
What is harder to look at? Large bumps on an arm or the large stomach of a man with a tube sticking out where there once used to be a slim, flat stomach without a tube?
What's worse? Not being able to bath or not being able to shower?
It not's always easy adjusting to the changes dialysis brings. Our perception of what is easier to deal with is based on our personal preferences. Still, we would prefer to not have tubes or fistulas, a machine, bottles of pills, boxes that fill up our space, life-long trips to hemo-dialysis clinics and hospitals, or nightly hook-ups to a machine for ten hours every night, but without these things, we face the end of a life.
In life, there is sorrow and there is joy. When my partner's neck cathetar was removed and he was able to shower for the first time in six months, we both celebrated. Without dialysis, we wouldn't have had that moment when he felt the relief and joy a long shower brings.
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Although one poster (who shall remain nameless) inappropriately stooped to criticizing me personally in this series of messages, which I take as grossly out of keeping with what we do here, I did criticize the way fistulas look in general, but I never directed my comments against anyone in particular, which would be entirely wrong. There is no way to compare fistulas and catheters objectively without taking into account the way they look, but as long as this is stated as a characteristic of the form of dialysis access, and not of any particular person, I feel it should not count as a personal insult. Fistulas look extremely different from one person to another, so for any particular person, the general criticism about fistulas' appearance might not apply.
Oh, stauffenberg, how sweet of you to want me to be able to maintain my anonymity in this discussion. How thoughtful of you :-* ! But, since it's obvious that I am the "nameless poster" to whom you refer in your last post, let's continue.
Here are your words that describe a fistula:
(1) freaking everyone out;
(2) horrible disfigurement of your arm;
(3) unpleasant;
(4) creepy;
(5) massive sausage sprouting out of your arm;
(6) buzzing all the time like a beehive.
Since my husband has a fistula, I was definitely insulted by your descriptions of this type of access. (If you had said that all red-headed people are ugly and my husband had been a red-head, I would have been insulted by that, too.) You grouped all fistula-owning patients together and categorized their life-sustaining accesses as something that matches the words -- YOUR words -- I quoted in 1-6 above. No, you didn't specifically say, "Marvin has a freaky, unpleasant, creepy, horrible disfigurement that is a massive sausage sprouting out of his arm buzzing all the time like a beehive." But, when you described fistulas in general with these words, you might as well have said that's what Marvin has. And, that's NOT what Marvin has; he has a beautiful fistula that allows him a good access (his access of choice) which, in turn, helps keep him alive by serving as a way for him to receive his dialysis treatments.
If you'll go back and read my posts, you'll see I never "slammed" perm caths, or grafts, or PD caths; I merely said that Marvin (who has had all of the above) prefers his fistula. You, on the other hand, degraded and horrified the appearance of a fistula. Now, I ask you -- which of us (me or you) is "inappropriately stooping" here?
Although one poster (who shall remain nameless) inappropriately stooped to criticizing me personally in this series of messages, which I take as grossly out of keeping with what we do here,
Perhaps I'm confused as to exactly what it is that "we do here." I thought IHD was a place for people affected by ESRD, dialysis, and transplantation to SUPPORT one another, to offer advice, to commiserate, to share, to console, and to empathize with each other. I have not found that you are functioning within the confines of what my idea of "what we do here" is in this particular thread.
But, you know what you're doing to me, you naughty boy? You're making me do what my grandmother told me not to do. So, I had better stop for now.
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What we don't do here is attack each other's personal character. What we can do here is describe objectively what inanimate things, like fistulas and catheters, look like. If you can't understand the difference then maybe you had better consult the moderator.
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i don't think anybody is 'cheering about getting a fistula' - but there is cause for relief when a catheter is removed and one can take a shower again, that's for certain, and for we who have found ourselves robbed of many of the joys in life that others take for granted, every step towards normality is a blessing and cause for celebration.
everyone makes good points here and there is no 'absolute' when it comes to one's own experience.
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What we don't do here is attack each other's personal character. What we can do here is describe objectively what inanimate things, like fistulas and catheters, look like. If you can't understand the difference then maybe you had better consult the moderator.
Hmmmmm.....okay, let me see if I've got this right. Here at IHD, we don't attack each other's personal character, but we DO attack the way people (and more specifically, people's fistulas) look (or your opinion of how they look). Is that what you're saying? You come to a place that caters to dialysis people and then you use nasty words and terms to describe an access that many dialysis people have. Did you think you could do that and NOT get some negative feedback? And, for your information, there is nothing "objective" about your descriptions of "freaky," "horrible," "unpleasant," and "creepy." If you can't understand that, then YOU need to consult someone other than a moderator!
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Re-circulation is a problem for fistulas as well. But to summarize, just consider all the advantages of the catheter taken together:
1) Absolutely no pain on being hooked up to the machine or taken off.
2) Zero danger of infiltration.
3) Absolute freedom of movement of both arms and hands during dialysis.
4) No robbing of circulation from the arms or hands.
5) No problem of the fistula access deteriorating over time.
6) No painful fistulagrams.
7) No need for elaborate surgery to construct the access, but instead just a half hour procedure.
8) No waiting time to use the new access, instead of all that time lost waiting for it to mature and exercising to make it work.
9) No permanent disfigurement of the body.
10) Minimal disfigurement of the body compared to the fistula while it is still in place.
11) No worry about the access eventually breaking down and having to be re-built in an elaborate procedure. If anything goes wrong, the catheter can be replaced over a guide wire in a few minutes.
12) Generally better pump speeds (ca. 450) over the entire lifespan of the access, rather than having to worry about gradually decreasing pump speeds over the limited lifespan of the fistula.
13) No possibility of failure of the catheter to work after insertion, as happens with some fistulas.
While I agree that everyone's tastes are different, even those who for some reason I can't understand prefer a fistula should not be cheering wildly over having the catheter removed, as though it had no advantages at all.
You forgot to include sooner death - which if I understand your point of view - would be a feature and not a bug if you had to be on dialysis.
Use of fistula or catheter is the strongest variable in determining mortality rate/expected survival.
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I was tempted to get everyone's attention with a new topic thread entitled "Calling all scar voyeurs, See some skin " but thought I'd just put these visuals here. I call these my scar collection but I have others in other places too, just not pertinent to ESRD.
First is my old fistula scar and my new 2 week old fistula scar and second is my transplant scar, sharing my belly with an appendectomy scar.
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Grammalady:
Congratulations on having your permacath out! :yahoo; :2thumbsup; :clap; :bandance;
I still have mine in and am waiting for authorization from the insurance to have it removed.
Mikey :grouphug;
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Grammalady,
Did you have your shower yet? :yahoo;
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Re-circulation is a problem for fistulas as well. But to summarize, just consider all the advantages of the catheter taken together:
Disadvantages.
1. Catheter can be pulled out or dislodged on accident.
2. Catheter easily affected by movement during dialysis causing machine to stop thus extending dialysis time.
3. Life threatening infections that can cause days of misery with 103+ fever and having to sleep on a cool water bed to lower temp. Even with antibiotic treatment roughly 40% of people still develop endocarditis.
4.. Catheter clotting or partial clotting resulting in switched lines and recirculation and lower pump speeds.
5. Actually slower pumps speeds over the life of this temporary access.
6. Oh yes possibility of failure with catheters after they have been placed.
7. No showers
8. Constantly having to be careful so as not to catch catheters on anything and not get them wet or exposed to bacteria.
9. Greater chance of a air embolism due to proximity to of placement to heart.
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I was tempted to get everyone's attention with a new topic thread entitled "Calling all scar voyeurs, See some skin " but thought I'd just put these visuals here. I call these my scar collection but I have others in other places too, just not pertinent to ESRD.
First is my old fistula scar and my new 2 week old fistula scar and second is my transplant scar, sharing my belly with an appendectomy scar.
Your scars are cute! I used to be so embarrassed by my scars when I first started dialysis (at age 14). But slowly I have grown to love them as they show all I have been through in order to get to this point in my life. I love living and will do anything it takes to keep on living. Once, after my transplant, I was wearing those new-fangled low rise jeans and someone noticed my transplant scar. "Why don't you cover that up?" Um no. I have earned the right to display my scars proudly.
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Bigsky, I would note that I am not talking about temporary catheters, but only permanent catheters, so your point 5 falls. Since failures, accidents, and sabotage can occur with any dialysis modality, and since fistula failure is far higher and far more difficult to repair than catheter failure, points 1 and 6 do not count as advantages of fistulas over catheters. Point 9 is in practise unheard of, since a very large volume of air, much larger than that created by a catheter, is required for an air embolism. Points 2 and 3 never happened to me at least over eight years of dialysis in three different countries, and I never saw either happen when I was a student in Germany at a dialysis unit in the 1980s. Fistulas, not catheters, are the big clotters, so point 4 also does not count as an advantage of fistulas over catheters, but exactly the reverse.
That catheter use increases the death rate is a red herring, since only catheter misuse could cause that. In any case, that theory is just the feeble effort of substandard US for-profit dialysis providers trying to contrive excuses to explain the much higher death rate among patients in the US than Europe, but having seen dialysis in four countries including the US, I can say I never noticed any difference in rates of catheter use among them.
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That catheter use increases the death rate is a red herring, since only catheter misuse could cause that. In any case, that theory is just the feeble effort of substandard US for-profit dialysis providers trying to contrive excuses to explain the much higher death rate among patients in the US than Europe, but having seen dialysis in four countries including the US, I can say I never noticed any difference in rates of catheter use among them.
That's truly comical.
http://kidney.niddk.nih.gov/kudiseases/pubs/vascularaccess/
Let's see we can listen to the National Kidney and Urologic Diseases Information Clearinghouse which is an information dissemination service of the National Institute of Diabetes and Digestive and Kidney Diseases which is part of the National Institutes of Health, which is part of the U.S. Department of Health and Human Services. Or we can rely on your four country personal survey. I for one don't find your conspiracy theory evidence very compelling, after visiting 21 countries I don't think I can say what is average in any one of them.
The thing is stauffenberg your past use of a catheter may yet cause your death because they tend to cause a permanent narrowing of the veins in which they are placed. Because of your ill advised prolonged use of catheters you likely have narrowing in some very important veins.
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stauffenberg,
I use the word temporary because they are all temporary. They are not meant for long term use in hemodialysis. By all standards a fistula is the "Gold Standard" for a access.
CMS, AAKD, NKF all recognize catheters as being only temporary in long term hemodialysis
Among reasons they list.
a greater likelihood to become infected, clotted or fail
a slower blood flow so dialysis may not clean the blood as thoroughly as with a fistula or graft
inferior access for long-term hemodialysis
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what fun, i apparently started.....well i'll be nice and won't say, what i will say (actually say again) ya'all remember the 300 pound gorilla in the corner of the room that i ignore, stauffenberg apparently spends his time chasing him around the room trying to make him leave. but it does make for interesting commentary. stauffenberg is entitled to his thoughts and feelings, no matter how many of us there are that disagree with him. i find his dissertations interesting, no matter how much i disagree with him. after more than 2 years of catheters, here are my main reasons for being glad mine is finally gone.
1 - it showed with almost everything i wore.
2 - i couldn't (not that i really want to) wear a bra with it.
3 - it itched continually
4 - when i drove the seat belt rubbed against it.
5 - it was the cause of the pulmonary embolism that landed me in the hospital.
now as to the scar from the fistula, WHO CARES. if someone sees it and comments, in fact i wish they would, it gives me the opportunity to climb on my soap box and educate a mostly unknowing population about kidney disease, dialysis and the need for living transplant donors.
sorry i'm just a fiesty red head with a big mouth and i use it. continue on, i'm enjoying this thread immensely.
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1 - it showed with almost everything i wore.
2 - i couldn't (not that i really want to) wear a bra with it.
3 - it itched continually
4 - when i drove the seat belt rubbed against it.
5 - it was the cause of the pulmonary embolism that landed me in the hospital.
I agree with most of your reasons for not liking catheters... only apply them to my PD catheter. At least it does seem that a PD catheter is safer than one for Hemo (just in terms of causing things like pulmonary embolisms). I think that while catheters do not bother some people, for me they are really annoying. Always itchy, always in my way. Any time I can feel just a little bit more "normal" is a day to celebrate. So congrats again on getting your cath out!
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stauffenberg, I have one question for you, are you truly that miserable of a person? I feel sorry for you if deep in your heart you believe what you post.
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Bigsky: "Temporary catheters," also called "Neck Lines," and "Permanent Catheters," also called "Permcaths," are technical distinctions between physically different designs of catheter. The first type cannot safely be used for longer than 10 or 12 days; the second type can be used for many years. You may want to characterize the second type of catheter as temporary because of various objections to them, but they are not 'temporary' in the same, technical sense of the first.
Bill: There is no way different rates of catheter use can account for the observed difference in death rates between the US and other developed countries, which is, on average, 24% per year in the US and 10% per year in the rest of the developed world. Catheter use is not sufficiently widespread to account for a 14% difference. The usual explanation offered is that at for-profit centers patients are confined to shorter treatment times, while in not-for-profit systems, there is no pressure to reduce patient treatment tiimes. In fact at US non-profit dialysis centers, where no doubt the catheter use is similar to that at private centers, the death rate is comparable to that in the non-profit dialysis centers in the rest of the world.
Petey: Almost all the comments on this message board are critical of renal failure and its various treatments, which INDIRECTLY characterize LARGE NUMBERS of people on this message board. We criticize sleep difficulties, exhaustion, anemia, hemodialysis, peritoneal dialysis, transplant medications, waiting times, transplant operations, and fistulas. While these phenomena are regarded as NEGATIVE, and these negative things INDIRECTLY characterize the patients and thus indirectly say something negative about them, they are not PERSONAL, INDIVIDUAL attacks on them, as were those against me. To say something negative about a particular individual's personality is uncivilized in any context, and outside the bounds of what is acceptable on this message board. I hope the distinction between your comments and everyone else's is clear to you.
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If you'd take a look at the data I think you'd find it more compelling than your four country personal survey
http://www.kidney.org/professionals/KLS/pdf/BestPracticeMar05.pdf
I was on a panel earlier this month that reacted to a presentation at the NKF Spring meeting, by Lawrence Spergel, MD, Clinical Chair, Fistula First Initiative who was presenting data to refute the idea that Fistula First increased the use of Catheters - which we believe we've seen here in Seattle - but Spergel had compelling data to show that this wasn't the case. I can send you the slides if you'd like but not much has changed since the 2005 data was reported - the above link provides a nice summary.
The difference in mortality is almost entirely due to catheter use (there are other factors but the vast majority of the difference can be seen flowing from catheter use, particularly prolonged catheter use) and I know it must be very tempting to bolster your argument by exaggerating the mortality difference but it is only in Japan - where the fistula rate is above 90% - where the mortality rate is below 10%. Outside the US and Japan mortality rates are mostly in the upper teens.
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Bigsky: "Temporary catheters," also called "Neck Lines," and "Permanent Catheters," also called "Permcaths," are technical distinctions between physically different designs of catheter. The first type cannot safely be used for longer than 10 or 12 days; the second type can be used for many years. You may want to characterize the second type of catheter as temporary because of various objections to them, but they are not 'temporary' in the same, technical sense of the first.
Technical distinctions mean nothing in terms of long term dialysis and the complications that arise from the use of such devices.
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Petey: Almost all the comments on this message board are critical of renal failure and its various treatments, which INDIRECTLY characterize LARGE NUMBERS of people on this message board. We criticize sleep difficulties, exhaustion, anemia, hemodialysis, peritoneal dialysis, transplant medications, waiting times, transplant operations, and fistulas. While these phenomena are regarded as NEGATIVE, and these negative things INDIRECTLY characterize the patients and thus indirectly say something negative about them, they are not PERSONAL, INDIVIDUAL attacks on them, as were those against me. To say something negative about a particular individual's personality is uncivilized in any context, and outside the bounds of what is acceptable on this message board. I hope the distinction between your comments and everyone else's is clear to you.
stauffenberg -- There's a difference between commiserating with others about the negativity of renal failure, sleep difficulties, exhaustion, dialysis, etc. and coming right out and describing how horrible and inferior one type of access is compared to another. As far as I'm concerned, you started the personal attacks when you used those awful, hateful words about -- and your distorted descriptions of -- a fistula. You weren't "INDIRECTLY" characterizing a patient with a fistula; oh, no, you came right out and directly stated that fistulas were horrible, freaky, creepy, sausage, etc. There was nothing indirect about your comments.
See, almost all of the posts on this site are supportive -- even if someone here is going through something awful, the rest of us try to encourage them to "hang in there" or to "keep going." We say things like "I know what you mean..." or "I've been through that, and here's what worked for me...." Your posts, however, don't have that same inference or tone. I think it is YOU who needs to look at the distinction between your comments and everyone else's.
I am usually an up-beat, positive, encouraging, supportive person. You just bring out the "ugly" side of me for some reason.
And, I agree with willieandwinnie...
stauffenberg, I have one question for you, are you truly that miserable of a person? I feel sorry for you if deep in your heart you believe what you post.
...if you believe what you post, it can't be healthy for YOU.
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Let us stay on topic. The catheter topic is great. I like the give and take in it. Interesting information about the mortality rates here in the US and Japan.
Have you showered yet? I loved my first shower after everything was healed!
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Have you showered yet? I loved my first shower after everything was healed!
of course :yahoo;
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Congratulations on your shower, thegrammalady! And thank you for starting one of the most informative threads I have read here!
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sorry i'm just a fiesty red head with a big mouth and i use it. continue on, i'm enjoying this thread immensely.
:-*
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Bill: There are so many confounding variables with the comparison of fistulas and central line permcaths that it is dificult to draw any reliable conclusions from the statistics. Because catheter rather than fistula use is significantly correlated with the patient being extremely sick from factors having nothing to do with catheter use, the higher death rate for catheter users is the result of these other factors, not from the catheters themselves. Thus fistula access is highly significantly correlated with patients 1) of younger age; 2) who are not diabetic; 3) who have no peripheral vascular disease; and 4) who have no angina. The first two correlations alone comprise the major causes of the difference in mortality among all dialysis patients, so these alone could wipe out the significance of the catheter-fistula difference. Also, catheter use was significantly associated with 1) the patient not having seen a nephrologist before the start of dialysis, which correlates well with patients who don't have access to healthcare, are not attentive to their health, or who are poor and live in medically under-serviced areas; and 2) with nephrology centers which are so poorly run that they don't bother preparing patients for dialysis until two weeks or less prior to starting dialysis,. Both of these factors constitute independent factors for increased death risk, having nothing to do with the difference between catheters and fistulas. (See R.L. Pison, et al, "Vascular Access Use in Europe and the United States," KIDNEY INTERNATIONAL, vol. 61, no. 1 (2002) pp. 305-316.)
Septicemia, which results from careless technique and thus can be prevented, is the real source of increased risk of mortality with catheters, but even that occurs only at a rate of 9 instances per 1000 dialysis days. The evidence of vascular stenosis from catheter use is, in contrast, only anecdotal, and the study by S. Evro, et al, "Implantation of Permanent Catheters in Patients on Regular Dialysis Treatment: The Results of Ten Years' Experience," JOURNAL OF VASCULAR ACCESS, vol. 2, no. 2 (2001) pp. 68-72, found no evidence of it in the group he studied, referring to it only as anecdotal, i.e., as "recent reports of permanent catheter venous stenosis."
Every year I go for prophylactic CT scanning and, after 8 years with a permcath for dialysis access, there is no evidence of vascular stenosis.
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Petey: Since I made absolutely no reference to any negative perception of the patients who, through no fault of their own, have to endure the modes of dialysis I criticized, any negative implications about those patients are based purely on inferences YOU YOURSELF have drawn. If you feel that you have the right to impute invented ideas to other people and then subject them to cruel and vicious personal attacks on the basis of what you have imagined they must be implying by what they are saying, then you might perhaps want to question your own motives.
In other contexts I have often found that when I have alarmed people in their cherished assumptions by radical ideas I have put forward, people have sometimes reacted by criticizing me, simply because they can think of no other way to defend their assumptions from the unsettling thoughts my purely theoretical point have aroused in their mind. I hope that is not the case here.
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we are not our long-held, cherished beliefs. nor are we the parts or process of dialysis, even though we rely on them to survive.
offensive people are easily offended.