Fistula Dying on me!!

[Amanda From OZ]

I wanted to ask for anyones advice or suggestions on what do with my fistula problems. Well it all started a few weeks ago, i have been doing the bottonholes technique for 1 1/2 years because i had so much scar tissue from previous cannulation, the nurses thought it would be the best way to go (which it was) but i have had problems cannulating, and getting good venous pressures recently ...... Then on Friday after many attempts (4 to be exact) my arm was swollen and black and blue, and after some great advice from IHD members, i gave my arm a good break and kept it elevated for a day or two and got off dialysis early.

Anyway i was very sick this morning so one of the nurses from the training center were VERY thoughtful and came to my house to help cannulate. After many attempts.. she finally got it in, but i couldn't get a pump speed higher then 190/200, which is not good because i haven't dialyzed well in a few days!............ After having a chat to the nurses, doctor and surgeon they believe that my fistula is dying on me, and the surgeon has told me before that if it failed she wouldn't be able to do much else with it, and has now suggested getting a vascath back in!!!! which is something i do not want! but the bigger problem is that my doctor wont let me have another vascath anyway because i have had a clot in my main artery were my last one was and he is concerned to put another one in. especially because of the clot but also because of my allergic reactions to warfin and stuff like that!  They suggested PD, but there is NO WAY i could live on that until my transplant because i wouldn't be able to do anything i usually do!!

I know this is a huge rant and my options are limited, but i am not to sure what i should>........ any suggestions would be appreciated as i am close to having a mental breakdown 

[goofynina]

Amanda, i am sorry for all that you are going through and i hope you find resolution soon.  Now,  i am wondering why you say you cant do what you normally do with PD?  if you are on the cycler, you run at night while you sleep, your small, i am sure you wont be on it more than 8 hours.  Yes, you do have a tube sticking out of your tummy, that might be the only thing that you may not like, but the only suggestion i can give at this time is to give the cycler a try... 

 try it, you'll like it

[Sluff]

Hope this helps  http://ihatedialysis.com/forum/index.php?topic=2485.0

[anja]

Hello, Amanda, so sorry for the difficulties you are experiencing!  Keep your chin up and the right answer will come~  Best of luck, hang in there, let us know how things are going, will you?

[tamara]

Amanda,

hope it get's sorted soon, maybe an option would be to do longer at the lower speed, just a suggestion.

Good luck, for a little while I had problems with my venous, but it has been fine for ages now, good luck and i hope you find answers but make sure they suit YOU.

[DeLana]

I'm sorry to hear this.  Unfortunately, I have no experience with the buttonhole technique at all and how this may relate to the problems you're experiencing; however, with any fistula problem (high venous pressures, poor flows), we normally send our patients to a vascular surgeon for a fistulogram.  Although not always successful, this is best done before the fistula clots, or at the very least immediately after you notice that the thrill (and/or bruit) is no longer there.  I would recommend that you have this done as soon as possible (of course, I don't know if your vascular surgeon has indicated that this cannot be done with your fistula; however, I would be very surprised if this were the case, since the fistula has not yet clotted).

HTH.

I wish you the very best,

DeLana

[Joe Paul]

Amanda, I'm sorry your having problems. Best I can do is to pray for you, and hope things sort out for you soon, God bless you and keep you 






EDITED: Duplicate post removed as requested - Sluff, Moderator

[Panda_9]

If they dont want to put a vascath in due to clotting then I think your only option would be PD. Whatever you decide, something needs to be done asap otherwise you will have no choice but to get a vascath. Do you have any other spots they could create another fistula? I actually had alot more freedom on PD than I do now on hemo.

[shay_pcb]

I too am curious as to how PD would limit you? I am 19 and on PD, and there aren't really that many limitations...

Hope things get better for you anyhow!! 

[BigSky]

Sounds like you have developed a stenosis somewhere along the fistula.  They should be able to perform a fistulogram and fix it if that is the problem.  Unless they damage the fistula during that process ,you should be able to still use the fistula right away without need for a vascath.

[jbeany]

 

Hope something works out for you soon!

[nextnoel]

I certainly hope this gets resolved favorably soon!  I'm thinking of you big time!

[Wattle]

 

     Amanda,

I was just wondering how you went today at clinic?

[Amanda From OZ]

Hello all,

First i would like to thank everyone who sent a PM to check up on me, it was greatly appreciated 

Well back to my fistula i am happy to say my fistula worked like a charm today! It did take me two attempts to get the venous needle in but my pressures have improved a lot and we are all hoping it stays like that for a little while longer!!

I too am curious as to how PD would limit you? I am 19 and on PD, and there aren't really that many limitations...

Hope things get better for you anyhow!!

Well i believe PD would give me  a lot of limitations because i have been told i couldn't go swimming, or be active and do the things i usually do. And the risk for infection is to high for me to risk. Shay how do u go swimming and do stuff like that with a PD tube? being an Aussie girl at heart a lot of my time is spent at the beach, i couldn't imagine not spending most my time there.....

Anyway Thank you all for all your well wishes and thoughts, you are all wonderful!

Amanda
xxoo

[Panda_9]

You can go swimming on PD and you can be active. I was given some colostomy bags to stick over the tube so I could swim. It stops the water getting on the exit site. I actually went to the beach once with only my dressing on it and it was ok. You just cant swim in any murky rivers or lakes.

[goofynina]

I too go swimming,  not at the beach though, i swim in my sisters pool, they told me not to swim in rivers and lakes, but in places where the water is clear so you can see the bottom.  and as for the tube, well, its not like i wear a bikini    (yet)  psha, yah right, wishful thinking, lol,   anywaaays,  i am so happy to hear that your fistula is working, hopefully it will keep on keepin' on ya know what i mean     take care of you and keep us posted... WE CARE 

[bluedove57]

Amanda,
  Glad you got better pressure in you fistula. I will keep you in my prayers that it stays that way. This is just another  we have to face. You're in my prayers.

[Sluff]

Cool Beans Amanda Glad things are looking up. 

[Rerun]

OK Amanda you slipped the noose this time, but sister you better start thinking of what you want to do when that fistula goes out.  You need PLAN "B".  So figure it out so you know what you want done. 

Another thing to talk to your surgeon about is a cadaver vein.  They take a vein out of a donor cadaver and us it in your arm as a graft. 

I'm in the same boat as you.  Bad veins, no more chest cathes, no PD (only because I can't).  So, I'll be up old "Shit Creek) pretty soon myself.

[shay_pcb]

Hello all,

First i would like to thank everyone who sent a PM to check up on me, it was greatly appreciated 

Well back to my fistula i am happy to say my fistula worked like a charm today! It did take me two attempts to get the venous needle in but my pressures have improved a lot and we are all hoping it stays like that for a little while longer!!

I too am curious as to how PD would limit you? I am 19 and on PD, and there aren't really that many limitations...

Hope things get better for you anyhow!!

Well i believe PD would give me  a lot of limitations because i have been told i couldn't go swimming, or be active and do the things i usually do. And the risk for infection is to high for me to risk. Shay how do u go swimming and do stuff like that with a PD tube? being an Aussie girl at heart a lot of my time is spent at the beach, i couldn't imagine not spending most my time there.....

Anyway Thank you all for all your well wishes and thoughts, you are all wonderful!

Amanda
xxoo

I only can't swim in public pools, lakes, ponds, etc. Oceans and well-kept pools are ok. My tube is low enough so that I can just tape it right underneath my bathing suit bottoms across my stomach. The only part you can see is the exit site, which I cover with a 2x2. And I'm still pretty active. The only reason I don't go out and do stuff like I used to is bc I'm usually tired, but that's just part of dialysis period.

[nextnoel]

Another thing to talk to your surgeon about is a cadaver vein.  They take a vein out of a donor cadaver and us it in your arm as a graft. 

I never thought of this - I find it very reassuring, as I am unlikely to be able to do PD (physical reasons), and have terribly small veins (remember that old saying that inside every fat person there's a thin person trying to get out?  Well, that's what's left of her!).

If it were possible, could they take a cadaver vein that already has a mature fistula?

[angieskidney]

I find HD (inclinic since it isn't available for home yet in my city and my apt mgr won't allow it installed anyway here) MUCH MORE limiting than I EVER found PD! Especially CCPD (nocturnal)!! I was soooo free I actually took myself off the transplant list for about 1/2 yr because I didn't have a ride set up to the transplant city anyway and was going through a lot of emotional crap at the time my mom disowned me for 18 months in 2004.

PD was great! I really wish I could go back to it one day if I don't get a transplant soon! Man what I would do if they told me I could go back on it! Man I would be sooo happy!

But I do feel for you. But you have to do whatever you have to do. It isn't always easy. Like I wanted to be on the type of dialysis I am on? You don't always get your preferred method of dialysis.