neck fistula, anyone?

[TrophyWife]

Hi guys! They are moving my father's arm fistula to his neck...........just the thought . Is it as bad as it sounds? I mean , having dialysis thru the neck sounds just too much ........ Especially for a 77 year old. Please tell me that is not as bad as it sounds......but they told him that his arm fistula got an infection there is nothing they could do for him at that point. Anyone have any experience with this type. Thanks so much.

[Rerun]

I would HOPE they mean a "permacath".  That is a catheter in the chest/neck.  I like it better than the fistula because there are no needles.   They insert a catheter in an artery in the chest and tunnel it under the skin in the neck to keep it in place with a few stitches.  They don't want you to shower, but I tape the damn thing up with saran wrap and do it anyway.  Just can't get it wet. 

I have never heard of a fistula in the neck, but let us know what they say.

[TrophyWife]

That doesn't sound so bad . I hope that is what they mean. cool . Thanks so much I feel better already. I just pictured all these needles being stuck in his neck. AND hey, he doesn't like to shower anyway! ha  ha
Thanks 

[Epoman]

That doesn't sound so bad . I hope that is what they mean. cool . Thanks so much I feel better already. I just pictured all these needles being stuck in his neck. AND hey, he doesn't like to shower anyway! ha  ha
Thanks 

Sounds like my dad. 

[TrophyWife]

Glad I am not the only one.......my brothers and I always joke about dad's Sunday shower. Once a week is better than nothing. ha ha

[Rerun]

My Grandma only gets her hair done once a week (7 day week) and it looks great all the time.  It is funny how generations change and how the times were back then.  If we had to haul water, we'd probably shower less too.

[anja]

My dad has had a permacath in his neck/chest for 5+ years- long time to go without a shower!  Don't think I could  take that !  He is 88 years young and does not want a fistula or graft.( though they have tried repeatedly to to encourage it...) He also only goes to hemo. on Monday and Fridays for 3 hours ~ still able to urinate and no diabetes.   Wishing your dad good luck,  Anja

[jdat]

There are two different things:

-Most common is what people refer to as the neck catheter. It allows for immediate access when having to start dialysis under urgent circumstances. The end of the catheter comes out on your shoulder.
The problem with the area where it comes out is that there is a lot of movement from the arm and shoulder making the dressing never stay sealed for long.
That means showers are often compromised and quarelling with nurses quite frequent as they think their patients don't take care of the dressing properly but really it's the method and location that are just prone to ineffectiveness in keeping the access point clean.
Most importantly it must be kept in mind this is a temporary thing as they get clotted very quickly apparently. And they are NOT comfortable.

-The tunneled/quinton catheter. This is by far the best option in my opinion. It is rarely discussed because most patients do not require the long term reliability this catheter offers. The end of the catheter comes out on your chest approximately between the shoulder and the nipple. Having had both a neck an a quinton catheter I can only insist to try and get this second method if it's going to be long term. The dressing always stayed sealed ( for the most part .... give or take one or two leaks but that number is far better than what you would get with a neck cath ). The comfortable level is astounding, you just don't feel it. The only pain that may appear is after the procedure to install it and that may last a couple days but afterwards it's smooth sailing ( the neck cath is less painful at first if memory serves me right ).

There may be some variations in the method, especially concerning the sealing of the catheter I believe. Where I am located ( France ) caths are systematically covered with tegaderm dressing which is a clear plastic dressing.



Now it's important to keep in mind that in both cases the blood pump rates will be slower than with conventional fistula access. It will be ranging ( this varies from one person to another obviously ) from 200 to 300+ versus a minimum of 300 with a fistula ( anyone feel free to correct me if I'm wrong about the speeds ).

Sorry if I said more than you wanted to know, but rest assured that in either case having dialysis through the neck is not as bad as it may sound.

[Panda_9]

I would rather do it through a fistula. I dont like having to cannulate, but I use blunts so its bearable. I also hate having a fistula, but I think I hated having a permacath more, for a few reasons. For one I couldnt scratch it!! I am very sensitive to all things sticky and this drove me totally batty. I ended up scratching it all around the outside of the dressing til it bled. Then I discovered I could scratch it through the tegaderm dressings, so scratch scratch scratch I went, mostly in my sleep. It bled a bit too, and it wasnt totally pain free. Then when they clean it with chlorhexidine every dialysis it HURTS. The first one I had got infected which made me very ill, had to do the usual long hospital stay for ABs, then get another access in my leg for the ABs because I have crap veins, and then that access got infectected, but thankfully it was due to be taken out anyway. The second time I had a permacath it was fine, apart from the itching again.

This is just my experience, its not always smooth sailing. Permacath's are very prone to infection so hygeine and dressing technique is important. We were allowed to shower as the dressings are designed to be waterproof. In my case they just fell off, plus I was allergic to them, so I devised my own dressing. Not only did it stay on until it was due for changing, the permacath stayed nice and dry too. 

[Rerun]

I would rather do it through a fistula. I dont like having to cannulate, but I use blunts so its bearable. I also hate having a fistula, but I think I hated having a permacath more, for a few reasons. For one I couldnt scratch it!! I am very sensitive to all things sticky and this drove me totally batty. I ended up scratching it all around the outside of the dressing til it bled. Then I discovered I could scratch it through the tegaderm dressings, so scratch scratch scratch I went, mostly in my sleep. It bled a bit too, and it wasnt totally pain free. Then when they clean it with chlorhexidine every dialysis it HURTS. The first one I had got infected which made me very ill, had to do the usual long hospital stay for ABs, then get another access in my leg for the ABs because I have crap veins, and then that access got infectected, but thankfully it was due to be taken out anyway. The second time I had a permacath it was fine, apart from the itching again.

This is just my experience, its not always smooth sailing. Permacath's are very prone to infection so hygeine and dressing technique is important. We were allowed to shower as the dressings are designed to be waterproof. In my case they just fell off, plus I was allergic to them, so I devised my own dressing. Not only did it stay on until it was due for changing, the permacath stayed nice and dry too. 

Amber, so true about the scratching!  Geez sometimes I just want to rip it out!  So, what is your secret technique for your dressing?

[TrophyWife]

That's why I keep wondering why put him thru the permacath at this point. I mean it seems, from what I've heard. It has just as good a chance of becoming infected as the arm fistula. That's what they said they were worried about , infection. See, his arm keeps swelling because he shares that vein(left arm shoulder) with his pacemaker lead.  The fistula itself is working good- why take it out. His pacemaker doctor wants it out(  Emory-Atlanta) and sent him to this Vascular surgeon at Emory . Now his dialysis nurses(they have been good to him)are upset about it and want him to get a second opinion from the first Vascular surgeon. PHEW
I do appreciate all the info from you guys- Helps sooooooo much.
I have an Aunt that just turned 90 and is going strong. We keep saying it's because she hates doctors and never would go see one.  
Seems like the more doctors we go to............the more they want to "poke" on him.  

[Black]

... Now his dialysis nurses(they have been good to him)are upset about it and want him to get a second opinion....

YES!! Always get a second opinion from a different practice group.  The first surgeon who saw my husband's arm veins said he only had a 15% chance of getting a working fistula and would probably come out of surgery w/ a graft in his dominant arm.  Second surgeon said he saw no problem getting fistula in his non-dominant arm and that's what he has!  Always get a second opinion if it's anything important. 

Hope all goes well.

Lorelle

[angieskidney]

I have what I think is called a permacath and I have been allowed to shower as soon as 6 weeks after it healed. I asked my nurse about why and she said it is done a little differently than in the States I guess. Mine is healed so that it is completely closed and no water gets in by simple showers even though nothing is 100% and I must do what is called a "Shower Technique".

As far as I have heard every place in the States you cannot shower with it. In Canada they do it slightly different but looks pretty much the same (?? I don't know) ..

You tell me .. this is mine (attached):

[Rerun]

Yes, that is what mine looks like.  I asked my Vascular Surgeon why PD people can shower and permacath people cannot.  He didn't know the answer!  (Surprise Surprise) 

Thank you for the picture.  That was very helpful.

[jdat]

I had a similar catheter and it was always covered with a plastic dressing so showering was never a problem.

I think in the US they don't cover it with plastic? But they put some form of cloth bandage ( just like with PD )?
Any insight on that?


I did some searching a while back on permacaths ( they are very widely used outside the dialysis world by people who need to do many blood labs over extended periods ) and I didn't find anything in the US that showed the catheter being sealed with plastic.

[goofynina]

I think the plastic he is referring to is the Tegaderm and when i had mine on, that damn thing ate my skin, more pain, ugh

[angieskidney]

I did some searching a while back on permacaths ( they are very widely used outside the dialysis world by people who need to do many blood labs over extended periods ) and I didn't find anything in the US that showed the catheter being sealed with plastic.

Actually that was is called a "Central Line" and is a little different. I had to have one of those before so I am very well aware of the difference. That is not the same thing as this.  The "Central Line" is used for when a patient has to have blood work over and over again ... I had to have so many and with my scar tissue they gave me a central line but that was years ago. I have the scar for it but it was closer to my arm pit and didn't go into the neck area like the permacath does.

[jdat]

I think the plastic he is referring to is the Tegaderm and when i had mine on, that damn thing ate my skin, more pain, ugh

Yeah Tegaderm is what I had. .... I guess I must be weird cause it didn't scratch or anything apart from time to time but I got used to it fine.

[Rerun]

Yes, we use Tegaderm, but are still told "not to shower."  They are just covering their butt.  They KNOW you are going to shower, so when you get an infection they can say it was your fault because you showered and got it wet.  I still say, "Show us showering techniques" instead of telling us not to shower.  I would think being dirty and sweaty would start an infection quicker than trying to stay clean. 

[Bajanne]

When I had my catheter (seems like ages ago, but just last Sept) I got a bad rash on my skin from the plastic-type dressing.  They had to use the fabric-type with me.  It seems that my skin just doesn't like these sticky things on it.

[Panda_9]

Rerun, I just used 2 large tegaderm, putting one over the exit site, making sure there was enough around it to keep it intact, then put another large one overlapping that over the tubing where the clamps are. The normal dressings used didnt go down far enough, so the tubing moved and pulled it off and the water got up there as there wasnt enough coverage from the tubing to the exit site. So basically by using the tegaderm to stick it all down, it didnt come unstuck, and at the same time kept as much of it dry as possible. I hope thats a good enough explanation. If you want me to try draw a pic or something let me know  
Also to ease the itching and soreness from itching (because it go so damn bad), I just put gauze around where it was red and sore, then stuck the tegaderm over that, making sure all the gauze was covered sufficiently. I just kept moving the gauze around each time, to let the skin heal. It was a bit of overkill, but it was much more tolerable for me, and the nurses were more than happy for me to do it that way. Im allergic to all things sticky, but some worse than others. My fistula itches like crazy, but theres not much else I can do. Ive found it helps to keep it moisturised and dont leave the tape on for too long afterwards.

Ive had a central line as well, but it was worse than a permacath because it was in my groin  Dont ever let someone inexperienced dress it (or a permacath), unless they follow the appropriate guidelines. I went to my GP to get the dressing changed and I asked for a bit of gauze to be put under the tegaderm as it was in a painful spot, so they put some foam stuff, but didnt cover it all the way with the tegaderm. I asked the nurse who did it would it matter if it got wet? She said no just dab it with a towel. I wish I didnt listen to her, because it got infected after it got wet.

I think the reason why you dont shower with a permacath, is because they are very close to the heart, and usually they are only temporary, so dont have a chance to heal. PD catheters arent allowed to be wet until they are healed. So I guess if your permacath is healed it must be ok to get it wet, Im not real sure though. We were never told not to shower, just to make sure it didnt get wet, and if it did it would need to be redressed straight away. Fistulas are still prone to infection, but its less likely as they are closed off after each Dx. You arent showering with the needles in.

[goofynina]

I used to shower right before going to dialysis and taking the dressing off when i was done, put a large gauze over it so my clothes wouldnt rub it and as soon as i got to the clinic, they would dress it up for me.

[Rerun]

I used to shower right before going to dialysis and taking the dressing off when i was done, put a large gauze over it so my clothes wouldnt rub it and as soon as i got to the clinic, they would dress it up for me.

So......you took 3 showers a week?

[goofynina]

My hubby would give me a sponge bath the days i didnt dialyse but there is nothing like running water on your body, so i took what i can get...

[angieskidney]

My hubby would give me a sponge bath the days i didnt dialyse but there is nothing like running water on your body, so i took what i can get...

Ya but that would work! Sounds like a great idea to me! I am just glad that now that they are using my fistula that I might be able to get rid of this catheter soon Woot! Swimming time for me! I can't wait! It has been YEARS!!!