Question regarding Fistula

[knmiller]

Hello everyone,

I have a quick question regarding my fistula.  I've been doing dialysis since June and have been using a catheter thus far.  Last week, we were able to start using my fistula and I am ECSTATIC!!!!  I look forward to the day that I can stand under the showerhead for hours on end...believe, I'm planning on it.

I'm 30 years old and the youngest at my unit by quite some age.  Looking around the room, a lot of the patients are in their 70's and 80's.  After sitting down and speaking with a lot of them, I noticed that the area where the fistula is located is raised significantly and looks like a, excuse the lack of understanding here, golf ball stuck under the skin.  Some of the fistulas are raised that high.

My question is, does that happen to everyone?  Is it that significantly higher then the rest of my arm?  If so, I'm a little unnerved about that.  Is there anyway to prevent that?  If not, how long does it take to become that pronounced?

Sorry for the randomness of this question, but am still new to the process...

Thanks for your help!

[jbeany]

Someone else was asking the same thing earlier . . .Amanda from Oz, I think. . .  they were supposed to be posting pics showing their fistulas.

Anyone know what post that was?

And while we're at it - does the same thing happen with a graft?

Bill Peckham has a video online showing himself doing a buttonhole cannulation - his don't look very pronounced, and I know he's been on for a long time. . .
Check it out at . .
http://www.dailyhemo.org/2/page.php?7

[Epoman]

Hello everyone,

I have a quick question regarding my fistula.  I've been doing dialysis since June and have been using a catheter thus far.  Last week, we were able to start using my fistula and I am ECSTATIC!!!!  I look forward to the day that I can stand under the showerhead for hours on end...believe, I'm planning on it.

I'm 30 years old and the youngest at my unit by quite some age.  Looking around the room, a lot of the patients are in their 70's and 80's.  After sitting down and speaking with a lot of them, I noticed that the area where the fistula is located is raised significantly and looks like a, excuse the lack of understanding here, golf ball stuck under the skin.  Some of the fistulas are raised that high.

My question is, does that happen to everyone?  Is it that significantly higher then the rest of my arm?  If so, I'm a little unnerved about that.  Is there anyway to prevent that?  If not, how long does it take to become that pronounced?

Sorry for the randomness of this question, but am still new to the process...

Thanks for your help!

It all depends on the person, as every ones veins react differently. At first I was embarrassed by my fistula I would wear long sleeve shirts in 100+ degree weather, but then I finally said screw it, I don't care what others think. Then someone told me something that makes a lot of sense, "The bigger the fistula the easier it is to stick" My fistula is big and it looks like I have a snake under my skin. But your vanity will go away as I was worried too. I have some images of some scary looking fistulas but I won't post them as to not scare or worry you, because even I do not like to look at them.

My fistula is big, but not as big as some I have seen. Your fistula will get bigger over time, however unless it gets really big and dangerous then I would not worry about it. Also I reccomend the "Buttonhole Technique" See the Official thread on this site explaining all about the buttonhole and what it is. Also I would STRONGLY suggest after your fistula is more mature that you start sticking yourself, and NEVER let anyone stick you again. By you learning to stick yourself, you will save yourself a lot of trouble over the years, believe me. I have been sticking myself for over 7 years and I have never infiltrated myself once. And believe me they (the nurses or techs) will infiltrate you at some point.

In closing, some people get really huge fistulas, other get a few bumps, while others have average size fistulas, just be grateful it is working and it may last you many decades, which is much better than a "graft". And for the time being wear long sleeve shirts and no one will know.  That is one day when you just say "Screw it" and go back to short sleeve, like I did.

- Epoman
Owner/Admin

[kitkatz]

I have a few bumps along my graft.  They tell me is is from being infiltrated and to just be careful.  I think having the graft stuck so much begins to affect the skin and area where it is located.  My personal opinion from what mine has done.  If I want to shock someone I just show them my left dialysis arm!  Usually shuts them up about anything little happening to them.

[angieskidney]

this is mine. Where they connected it (vein and artery) is where I got that bump

[susie q]

Can't see mine... it's got bumps under the skin in a couple of places.. most likely from the infiltrating.. but it works well .. 

[RichardMEL]

Mine is quite raised too and just like a snake under the skin - the nurses have commented on how contorted it is and they feared it may be harder to needle correctly but so far only 1 problem in 4 months. The "bulge" where the vein and atery are connected is right on the wrist and sometimes is definately bigger than others.

I too was thinking about covering it up, but you know I am kind of like epoman... I don't care anymore. It's coming up to summer here and damnit I want to wear a short sleeve shirt I will. If people want to stare let them - heck with all the needle marks in my arm I have no doubt some see me and think i'm a (illegal) druggie. Well whatever gets them through the day.

If someone wants to ask I'll explain.. until then they can live in blissful ignorance!

But as others have said some can be hard to notice while others are pronounced... and yes, I have also been told that mine is a good fistula because it's easy to see and work with, despite being snakey.

[angieskidney]

I don't cover mine up because after all the things I have gone through I just don't care anymore. I mean, in high school I used to wear thick nylons with my catholic school girl uniform (kilt and all) to cover the stretchmarks from the weight gain from the Prednisone from my first transplant when I was 16, and never wear bikinis because of the scars .. but now I just no longer care. If people stare at my arm and think I am a druggie let them

[Inara]

In my experience, fistulas gradually become larger as they mature and are used.  I've seen very few where the access wasn't raised above the skin in a noticeable way.  What I would think most patients find unattractive are aneurysms or pseudo-aneurysms that can develop and look, as you say, like golf balls. 

Maybe if yours does get larger than you would like, you can distract yourself with all those loooooong showers and take comfort in the fact that it's working 

[angieskidney]

2 people in my dialysis unit tell me theirs are abnormably large because it just formed that way right from the beginning but assure me mine won't be like that if it hasn't become like that already.


----------------------------------------------------------------------------------
*IMAGE REMOVED*

EDITED: I removed the picture of that fistula as not to scare people who are new to their fistula and I don't want them to get the wrong idea, I had saved that picture Angie when you first posted it on your forum but I didn't post it here as that is an EXTREME exception, I have seen literally hundreds of fistulas over the years and none have been that extreme. I hope you understand my reasons for removing it. I was hoping you wouldn't post that and I was going to PM you because I thought you might, but I forgot to PM you. - Epoman, Owner/Admin

[DeLana]

Looking around the room, a lot of the patients are in their 70's and 80's.  After sitting down and speaking with a lot of them, I noticed that the area where the fistula is located is raised significantly and looks like a, excuse the lack of understanding here, golf ball stuck under the skin.  Some of the fistulas are raised that high.

My question is, does that happen to everyone?  Is it that significantly higher then the rest of my arm?  If so, I'm a little unnerved about that.  Is there anyway to prevent that?  If not, how long does it take to become that pronounced?

In general, this should never happen.

A fistula will become more prominent (i.e., enlarge uniformly) as it matures; this is as it should be.   A well-developed fistula that has been well cared for (more on that later) usually looks larger than a very large vein, but should never be huge.*

A graft - a tube inserted between the artery and vein - should never increase in size and certainly never bulge.

What causes these bulges - called aneuryms (fistuals) or pseudoaneuryms (grafts) - is a weakening of the vessel (or graft) wall due to improper cannulation technique; in general, this means sticking and resticking in the same area (note that this does not apply to the "button hole" technique, which, if properly done, will not cause bulges**).

All nurses and techs are taught to rotate sites, or use as much of the fistula/graft as possible to allow the area to heal properly, but in practice you see many who ignore this.  Why?  Well, sticking a new section can be tricky and require more time and skill than resticking a large, bulging (pseudo)aneurysm does.  It can also cause infiltrations which will quickly give you a bad reputation among the patients (in other words, the more conscientious staffers who try to do the right thing to help preserve your access are not always appreciated by the patients)***.  Please note, however, that infiltrations in general DO NOT cause (pseudo)aneurysms!  They can cause a temporary swelling, though, but this should not damage the vessel.

In addition to being unsightly - and usually completely avoidable**** - very large (pseudo)aneuryms can be dangerous and potentially rupture, causing a life-threatening emergency.

Basically, you can do much to help avoid this problem.  Don't let staff restick the same area (except very early in fistula development when this may be necessary)!  Remind them that they should rotate the sites.  If you want to, and are able to, learning to self-cannulate would be best.  Also, ask your center's staff about the button hole technique.

HTH.  Good luck to you, you chose the best possible access.

DeLana 


* There are a few exceptions due to individual anatomy or surgical skill.

** In this case, you want to stick the same area (button) hole and it will not cause an aneurysm.  However, few centers use it at this time.

*** The favorite nurse or tech who always gets you on fast may in the process be destroying your access.

**** There are a few exceptions; some fistulas simply never develop properly for various reasons, and often the nephrologist will give approval to stick the only area(s) possible.  In such a case the pt should be referred back to the surgeon.

[Rerun]

2 people in my dialysis unit tell me theirs are abnormably large because it just formed that way right from the beginning but assure me mine won't be like that if it hasn't become like that already.

OK - JUST SHOOT ME NOW!

[kitkatz]

Bang, bang, bang!   

Relax Rerun. Most fistulas do not look like that one does.  My graft is a little puffy, but works okay so far for the last six years.  That is a long time on one graft.  They say it is still  doing good. I am going to have a sonogram done on it in January to check it out.

[angieskidney]

well one thing I have learned is that we can't be too concerned by how we look. It is more important that our fistulas actually work well. But as for the pic ... I know for myself that I want to know what to expect. I have always resented the people who have tried to hide things from me to "protect" me ... but maybe Epoman is right ..


as for aneuryms, I am scared about getting that because they do keep sticking and resticking in the same area. lately they are better as they have been listening to me tell them where to stick me. But this Monday at 4pm I start Buttonhole!! YAY!!! ABOUT FRICKAN TIME!! 


Also, Thank you  DeLana for your input! That was very informative!! 

[DeLana]

as for aneuryms, I am scared about getting that because they do keep sticking and resticking in the same area. lately they are better as they have been listening to me tell them where to stick me. But this Monday at 4pm I start Buttonhole!! YAY!!! ABOUT FRICKAN TIME!! 


Also, Thank you  DeLana for your input! That was very informative!! 

You're welcome!  Congrats on learning buttonhole, this is the best technique for sticking a fistula and should help to preserve your access.

DeLana 

[angieskidney]

as for aneuryms, I am scared about getting that because they do keep sticking and resticking in the same area. lately they are better as they have been listening to me tell them where to stick me. But this Monday at 4pm I start Buttonhole!! YAY!!! ABOUT FRICKAN TIME!! 


Also, Thank you  DeLana for your input! That was very informative!! 

You're welcome!  Congrats on learning buttonhole, this is the best technique for sticking a fistula and should help to preserve your access.

DeLana 

I am nervous but I will tell ya how it goes on Monday!

[Epoman]

But as for the pic ... I know for myself that I want to know what to expect. I have always resented the people who have tried to hide things from me to "protect" me ... but maybe Epoman is right ..

As I said Angie that pic is an extreme situation, and would scare the HELL out of some people, maybe so much they would chose to not get a fistula. I am all for showing people large fistulas because the reality is a fistula can get really big, however that picture is something that is a special situation. And will not happen to probably 99% of the people who visit this board. Also it isn't about whether I am right or wrong, bottom line is I simply do not want that picture in this thread.

- Epoman

[RichardMEL]

My nurses usually try to use new/different spots... although I have complained once or twice (bad paitent!!) because the new spots always hurt heaps more than the established ones... still they have explained the reasons for it so I grit my teeth for the longer term benefits.. I can sure understand some people preferring they needle the toughened up areas that are perhaps less sensitive to needling.

[Rerun]

Question:  Why does numbing medicine hurt?!!  Why can't they make something that is just injected that doesn't sting like venom from a hornet's butt. 

I know I've asked this before but since we have so many new members.......... does anyone use the EML cream?  I'm thinking of trying it.

[Inara]

Most of my patients who use it swear by it.  But there are a couple who claim it doesn't work, or it stopped working for them.  They say the hardest part is remembering to put it on in time.

I used it myself when I got a tattoo last year and didn't feel a thing! 

[DeLana]

Quick reply to a few questions:

- Yes, the frequently restuck areas do become numb to needle sticks; this is why some patients don't mind - or even insist - that the same sites are used over and over again (this does not apply to buttonhole, of course).  But is is not good for their access and will in time cause (pseudo)aneurysms.

- Yes, Lidocaine can sting badly - but some pts prefer it anyway.  You could always try it if you haven't.

- EMLA can be an excellent choice, the pts who tried it were happy with it.  I don't think all insurance covers it, though.

DeLana   

[Zach]

But as for the pic ... I know for myself that I want to know what to expect. I have always resented the people who have tried to hide things from me to "protect" me ... but maybe Epoman is right ..

As I said Angie that pic is an extreme situation, and would scare the HELL out of some people, maybe so much they would chose to not get a fistula. I am all for showing people large fistulas because the reality is a fistula can get really big, however that picture is something that is a special situation. And will not happen to probably 99% of the people who visit this board. Also it isn't about whether I am right or wrong, bottom line is I simply do not want that picture in this thread.

- Epoman

I'm glad you removed the picture.  It was too over the top.   

[angieskidney]

Question:  Why does numbing medicine hurt?!!  Why can't they make something that is just injected that doesn't sting like venom from a hornet's butt. 

I know I've asked this before but since we have so many new members.......... does anyone use the EML cream?  I'm thinking of trying it.

I use Emla cream and suggest anyone try it but always wrap the arm with Cling Wrap to make it set and keep it from evaporating! Trust me it works! I use it religiously!  
But you have to put it on an hour before you are cannulated.

Emla cream has this in it:
2.5% lidocaine
2.5% prilocaine

*Do not rub cream in. Place Wrap over area. Set for hour.

Says dressing not required on tube but honestly you know it will rub off on something so it is just best to wrap it.

Not to be used on individules with methemoglobinemia (which I have no clue what that is lol)

Do not use on open wounds.

Store at 15°C - 30°C (I bought it in Canada .. sorry about the Celcius lol. Think in F it is 59°F - 86°F) and Protect from freezing.

But as for the pic ... I know for myself that I want to know what to expect. I have always resented the people who have tried to hide things from me to "protect" me ... but maybe Epoman is right ..

As I said Angie that pic is an extreme situation, and will not happen to probably 99% of the people who visit this board

and to Epoman, really? That rare? I thought it wasn't so rare since 2 people in my small dialyisis unit of only 12 people have fistulas exactly like that (that pic is of the guy .. the girl didn't want a pic of her).
But I respect your wishes as you would on my forums. Sorry for posting it. Thanks for telling me I appreciate your explaination and patience with me   It scared me but I had no choice but to see it as those 2 people with them are in my unit. And then for them to tell me there is nothing they did wrong to cause that. But that if the fistula when first developed starts becoming like that there is nothing to do but to accept it. let me tell you I am soooo glad that mine doesn't look like that. I mean man! I don't think Sandman would have asked me to marry him if I had one like that ..  As it was everyone at the wedding was coming up to me asking what was wrong with my arm and what I did to it  Could you imagine if mine was as big as the removed pic? I would never want to go out in public again

[charee]

I'm glad you removed the picture.  It was too over the top.   

I'll  second that !

[Rerun]

Thanks for the advice on the EMLA cream.  So, with the EMLA cream do you get the lidocain injections too??  Probably a dumb question.  But, I don't want to feel the big needle.