Fistula fits

[WishIKnew]

What happens if, after two unsuccessful tries, the vascular surgeon can't get a working fistula in me.  He says my veins are "too damn small" and thinks a graft is an even worse idea for the same reason.  Since I had to switch to hemo 4 months ago all I've heard about is how important it is to get a fistula.  I've had two staph infections and 6 different perma-cath placements since June.  Now, I'm trying to get a fistula and it's not working - not to mention painful surgeries!!!!  Now what?

[lmunchkin]

WIK, girl Im sorry for what going on with your AVF.  But it took Js VS to go in and tie off some vessels to help it along.  Your fistula can actually create new vessels that will shoot off of the main vein of the fistula.  He will get it right it just takes time.  Once it gets matured and the walls get "tuff, it will get better for you!

I know you have been through alot, and this don't help very much, but a good VS will make this right, but it very seldom can be done in one surgery.  It takes little mini surgeries to help the fistula along!  Once it gets there, it should get better and give you adequate dialysis.

J. got his in I think march 2009, and it took a few more surgeries to get it working properly, and he has had no problems with it about a year and 1/2.  Hang in there a little longer WIK!  Youv'e been through Hell and Back and you will get through this too.

lmunchkin

 

[rsudock]

sometimes they will put the fistula in the leg.....

[MooseMom]

It took my mom 18 months to get a working fistula.  She was referred to a vascular surgeon affiliated with the dialysis clinic.  Finally, one of the dialysis nurses told her in confidence that the surgeon was not very good and told her to find a better surgeon.  She ended up going to the cardiovascular guys that repaired her aortic aneurysm; they were located in the Texas Medical Center and were top notch.  She was a very petite lady, my mom, and elderly, but the new surgeon did a superb job.  So, maybe you should get a second opinion.

[WishIKnew]

I'm already with the vascular surgeon my Dialysis clinic highly recommended and he's at the Cleveland Clinic.... 

[brandi1leigh]

I would suggest consulting with a different vascular surgeon. Your guy might be great, but sometimes a fresh set of eyes can help. A second opinion can't hurt.

[lmunchkin]

Im going to be honest, WIK. When J. got his avf surg. I thought all would be great, but it did not happen that way at first.  The clinic was having all kinds of problems with it, so they would send him to VS, and sure enough, he missed a vessel.  Then he would go back again, and another vessel offshoot would appear, so he had to go back and have it tied off.  After about 6 times I think they finally got it where he got good dialysis!  I was so darn frustrated with all of it, I wanted a graph put in him but due to his getting infections easily, I was advised against it.
Well I was tired of all of it and certainly blew off steam, but it worked out like they said.  Im very thankful for it too!  His works fantastic!!

When VS go in the first time and combine the arteries to form as one, there may not be vessels shooting off, but once the dialysis is used at a slow BFR, the pressure of it can cause small vessel to go out the side, so they have to go in and tie it off.  Until the walls of fistula mature and become calluse, this will happen!  Even the best VS in the world will tell you that very rarely will it take one surgery.  It depends on your body and how quickly it will harden over time.

Please, WIK, be patient and it will get better for you!  If there is a "frill" in the fistula, then you are ok.  When you lose the "frill" then something is amist.  Let the VS do his job.  If you want a second opinion, then by all means do!  We do it all the time, and it certainly doesnt hurt.  I may not know what you are going through, but I certainly understand the frustration and aggravation, cause I certainly was both when J. went through all of this!

I know the surgery is not fun by any means, but it should soon tapper off and fistula working "beautifully".  Even though I do not have this disease, I certainly am living it through my spouse, so I do know somewhat of what it is all about.

Youv'e had everything thrown at you at once, WIK.  Its just another chain in the link to make things as normal as possible for all of you.  It aint perfect, but it is better than nothing.

Hope things get better for you.  Lord knows, you have definately gone through Hell.  It is time for some relief here!!!!!!

lmunchkin

 

[sullidog]

I have a graft as I mentioned in your other post, I was having to get it opened up every month from who I thought was the best vs, but I had enough and went to a new vs, and now that every month has turned into 6 months to almost not at all.

[jazzin11]

My VS had to perform three mini surgeries too, to tie off new "offshoot" veins.  Then the AVF performed well for the next three years until transplant. He said that was very common. Prior to the corrective procedures, we couldn't get the flow needed, but after, along with normal development...it worked great.  Hang in there!

John (jazzin11)

[lmunchkin]

That is pretty much the way it was for me too, Jazz.  These little vessels that shot in a direction of there own can keep you from getting really good dialysis.  No telling how far those tiny vessels will go, but you want them to stop, so VS will go in a tie it off.  Over time, the walls of your fistula will callause or harden, that the vessels will not pop up, thus a great fistula will develop and will do exceptional well.

But I do remember the frustration of constantly going back, but it did pay off in the end!

lmunchkin     

P. S. Got to go to bed guys, work early in am.  Love yall & good nite!

[tbarrett2533]

There is a girl in my clinic who has one in her back and no I do not know what or if its even a fistula or something else, but its worth looking into anyway right?

another guy has one on his leg

[sullidog]

One in the back? that's a new one on me.
Also in my center for patients that have trouble with fistulas or grafts there's also the hero device.

[WishIKnew]

What's a hero device?

[Sax-O-Trix]

Is the correct term "Frill", "Trill" or "Thrill" in reference to the "buzzing" of the fistula?  Heard of "Thrill" and "Trill", but not "Frill"...  Just wondering

[lmunchkin]

WIK, never heard of a "Heros device"
SOT, I think people have diferent names for it.  I say "frill", but the thing is if you aint feeling it, then something is wrong!  You always want to feel it!

lmunchkin

 

[Dannyboy]

Diane,

I never heard of a HERO device, but I looked it up, here's a link with videos and other explanations:

http://www.hemosphere.com/

---Dan

[lmunchkin]

That is an interesting video.  Looks like wires that run through the engine in my car.

lmunch

[sullidog]

the correct term is a thrill.

[Stoday]

I must be lucky, my fistula worked first time without any surgical improvements.

I have developed several veins from it. I'm told they would always want to use the main fistula for the arterial needle, but now they have a choice of veins too for the venal return needle.

[WishIKnew]

Thanks for all the info guys!  I get the 11 stitches out of my dead fistula today.  We'll see what the next plan is...

My bilateral mastectomy is Oct 6th, so I don't imagine any fistula attempts will be until weeks after that.  Oh what a life!

[Sax-O-Trix]

Is there a chance of getting back on PD after your dbl mastectomy?  You don't need this extra fistula crud on top of everything else.  I will be thinking of you as you prepare for the 6th...

[sullidog]

Good luck with your surgery and whatever the fistula plan is! If the next access doesn't work then dump the surgeon

[Dannyboy]

Wow, Diane.  Stuff is piling up on you. 


Best wishes on successful operation and getting back to having them working on your fistula.


---Dan

[lmunchkin]

Danny, this little lady has been through alot!  Go back and read some old posts of hers.  It is heart wrenching the things this tough lady has gone through!!

WIK, will be thinking and praying for you!

lmunchkin   

[Dannyboy]

lmunchkin,  Oh yes, I remember, you bet.   She is amazing.  (...you hear that Diane??)
---Dan