YEA, The Cathater Is Finally Out

[angellady07]

So glad you are free from your permacath. 

[stauffenberg]

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?

[monrein]

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.

[lola]

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

[petey]

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  !

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  .

[petey]

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?
                      

[BigSky]

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.

[stauffenberg]

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.
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.

[monrein]

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?

[petey]

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!

[monrein]

Way to go grammalady, who knew that your feel-good moment could spark all this passionate tying?

[stauffenberg]

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.

[The Wife]

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.

[petey]

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.

[stauffenberg]

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.

[LightLizard]

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.

[petey]

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!

[Bill Peckham]

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.
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.

[monrein]

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.

[mikey07840]

Grammalady:

Congratulations on having your permacath out! 

I still have mine in and am waiting for authorization from the insurance to have it removed.

Mikey 

[The Wife]

Grammalady,

Did you have your shower yet?   

[BigSky]

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.

 

[spacezombie]

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.

[stauffenberg]

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.

[Bill Peckham]

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.