Fistula question

[cassandra]

So I'm just back from a fistulagram, but they couldn't get the line in the fistula where the narrowing begun. Not even with the smallest line. My venous pressures start a bit high, and lower to around 170 after an hour in session. My bloods have not changed much. I understand that my dialysis goes through the extra veins my body has created. The surgeon stood with a big grin on his face when saying that it's a miracle I can still dialyse.

I don't know what's gonna happen now. Anybody had this too?

Thanx already, Cas

[talker]

So I'm just back from a fistulagram, but they couldn't get the line in the fistula where the narrowing begun. Not even with the smallest line.

My venous pressures start a bit high, and lower to around 170 after an hour in session.

My bloods have not changed much. I understand that my dialysis goes through the extra veins my body has created. The surgeon stood with a big grin on his face when saying that it's a miracle I can still dialyse.

I don't know what's gonna happen now. Anybody had this too?

Thanx already, Cas

Not able to give an answer, as I haven't experienced anything like that.
My first impression though was your phrase :
'venous pressures start a bit high and lower to around 170 after an hour in session' .
Your body apparently knows what to do here and does it as required.
It forces a vein open and than drops the 'bit high' force , allowing dialysis to take place.

That your 'miracle' always be a part of your life.

[cassandra]

Thank you talker, here's hoping

   

[noahvale]

*

[cassandra]

Thanx Noa, you've made me feel a bit better, I've been running low pumpspeeds <280, and only longer hours when in the mood. I still find it easier to adjust my diet, and fluids. I know they can't put a stent in as it's near a joint, so those collateral veins (thanx for that lovely word) might keep dancing for a few years more too. Thanx again

Lots of love , Cas

[Sugarlump]

My fistula with graft stopped working recently, and we did notice higher pressures at first (that would settle) and having to run lower pump speed 250 before it failed completely.
Am currently waiting for my foot fistula to mature...weird place for fistula!!!
They didn't offer me a fistulagram though? I did ask if they could unblock it with one (or by using clot busting drugs) but they weren't able to.

Mine had narrowed/closed in the middle which had then affected the bottom of the fistula (which is why they couldn't just replace the graft as nothing to join it to)
Do you know where it had narrowed?

I would keep a very close eye on it.
If you do 4 hours @ 280 pump speed, how many litres do you clear?

[cassandra]

Hi Sugar first I'm of course wishing you well with your maturing fistula in your foot. Than I want to know where exactly it is, cos I've never seen one either. Is it above your ankle? On the inside or outside?

At the moment I'm doing 5 hours to compensate for the Wednesday when I had the 'no-go fistula pasti, and the Thursday when I decided to squeeze so much out of the day (just in case.....) that I was too knackered to dialyses in the evening 

So today is 60 litres in 5 hours (that's dialysate. Pumpspeed 260, blood processed around 70 litres.) Mostly I do 2 days 30 litres, 1 day off, and a 60 litres when I can.

I have a US scan every 3 months, and a gram when the flow is lower. I've canceled a few appointments for plasties as I was on holidays.

The narrowing is behind the subclavia, caused by scarring from subclavian lines etc, so it's been stretched about once every 18 months in the last 12 yrs.

Lots of love, luck, and healing vibes, Cas

[Alex C.]

What has also helped me was to use smaller needles (16 gauge), turn the pump speed down to <325 and run longer treatments (6 hours).

Holy crap!!! SIX hours ?!?!?!

[Vt Big Rig]

I know many docs tell you a fistula is the only way to go. Overall I think the best way so far. I would hate the idea of no shower!

 I got one "installed" over a year before I actually started dialysis. I thought I was having trouble until I have heard some of these stories. When we started dialysis (in-home with Next Stage) we had all kinds of clotting and flow problems. I have had three fistula-grams in 5 weeks ( )to try and straighten out. Have had over 10 "collateral veins" blocked off and ballooning twice.

Finally this week it seems to be working well. I can actually see it getting larger and last three days flow have been acceptable. We run 40 liters, for 3:20 at a pump speed of 450, with 15 gauge needles.

Good Luck

Vt Big Rig

[noahvale]

*

[Sugarlump]

Hi Sugar first I'm of course wishing you well with your maturing fistula in your foot. Than I want to know where exactly it is, cos I've never seen one either. Is it above your ankle? On the inside or outside?

At the moment I'm doing 5 hours to compensate for the Wednesday when I had the 'no-go fistula pasti, and the Thursday when I decided to squeeze so much out of the day (just in case.....) that I was too knackered to dialyses in the evening 

So today is 60 litres in 5 hours (that's dialysate. Pumpspeed 260, blood processed around 70 litres.) Mostly I do 2 days 30 litres, 1 day off, and a 60 litres when I can.

I have a US scan every 3 months, and a gram when the flow is lower. I've canceled a few appointments for plasties as I was on holidays.

The narrowing is behind the subclavia, caused by scarring from subclavian lines etc, so it's been stretched about once every 18 months in the last 12 yrs.

Lots of love, luck, and healing vibes, Cas

Hi Cassie took a picture of my foot for you. You can see the incision scar (almost like a horseshoe ) and the fistula comes up the leg centrally from this for about 5 inches.
Foot  is still very sore and a bit puffy. Had hoped would heal quicker. They told me it was good to walk on it but boy does it hurt!!!

[kristina]

Hello Sugar,
                           your fistula looks great and hopefully it is going to provide you with a good service without problems !
... And I do hope, you won't feel any pain anymore whilst walking ! ... And I wish you all the best for a quick recovery
and good luck!
Best wishes from Kristina.

[kristina]

So I'm just back from a fistulagram, but they couldn't get the line in the fistula where the narrowing begun. Not even with the smallest line. My venous pressures start a bit high, and lower to around 170 after an hour in session. My bloods have not changed much. I understand that my dialysis goes through the extra veins my body has created. The surgeon stood with a big grin on his face when saying that it's a miracle I can still dialyse.

I don't know what's gonna happen now. Anybody had this too?

Thanx already, Cas

Hello cassandra, I have no experiences with this,
but I want you to know that I am thinking of you and I wish you all the best.
Kind regards and good luck wishes from Kristina.

[BobN]

Cass, sugar,

Wishing you both the best.  Fistula problems really bite the big one.  Took me almost two years for the one in my left arm to mature, then it clotted and went to that big fistula farm in the sky.

So they put one in my right (dominant) arm and it took a year and too many infiltrations to count before it started working consistently.

Again, best wishes and let us know how you make out.

[cassandra]

"Hi Cassie took a picture of my foot for you. You can see the incision scar (almost like a horseshoe ) and the fistula comes up the leg centrally from this for about 5 inches.
Foot  is still very sore and a bit puffy. Had hoped would heal quicker. They told me it was good to walk on it but boy does it hurt!!!"  Quoted from Sugarlump.


Thanx for the pic Sugar, I really hope the pain subsides quickly for you too. Do you think you can needle yourself there?

Love, luck, and strength, Cas







Edited: Fixed quote tag error- kitkatz-Admin

[Sugarlump]

No hope!!!! of needling myself there 
It will be a Drew job eventually and even he will probably have to sit on the floor to do it!

[cassandra]

Thanx for all the well wishes, and thinkings sweet people! Yesterday the hosp send me an appointment for a fistula plasti. I rand to ask what they are planning to do. Apparently they will "try to balloon the fistual through my groin towards my arm".

 

So I asked how often they've tried that before, and if those people are still alive 'happily' doing D with that fistula. "Uh well, I'm not able to say that" so I'm trying to get to speak to the surgeons themselves, but it's a 'no thanx' from me for now.

Love y'all, Cas

[noahvale]

^

[cassandra]

Thank you NV, I'm already happy to hear that it isn't just some experimental procedure. I've had very successfull heart-surgery done through this method, but that was in a specialist hospital. I'm going to try to get there. Great advice.

Love, Cas

[Sugarlump]

Cassie, I have had both venogram and angiogram done this way... (venogram maps your veins when looking where to site fistula/lines and the angiogram to look at my heart function)
As scary as they sound, they are quite "easy to handle" interventions and I actually fell asleep during the venogram!
As long as you have experienced vascular access chaps doing them, I would say they are pretty safe procedures. Talk it through with the surgeon first.
If I could, I'd lend you mine (he is a top guy in this field) 

[kristina]

Hello cassandra,
... just a quick note; I also had an angiogram done (one of the requirements to get on the transplant-list)
and it went much quicker and much better than I thought... and like Sugar I was very lucky to have one of the top-specialists "doing it" ...
I wish you lots of good luck and all the best from Kristina. 

[cassandra]

Thanx Sugar and Kristina, I'll keep y'all informed about what's happening


     




Love y'all, Cas

[cassandra]

So I'm back from the fistulagram. I was informed 5 min's before the start that there was a 30% chance it would work. They entered from my groin and my upper arm simultaneously. It was pretty painful as they managed to infiltrate my fistula too. And my fistula, and me are now officially in the 70% group whereby this procedure didn't work.

Love to all, Cas

[Vt Big Rig]

THIS does not sound like fun. What is the next step??

[cassandra]

No info about next steps, I suppose 'they' will discuss 'me' in their next group session.
I think I will first go on a holiday as long as my fistula works, and follow Noah's 'strategy' by dialysing slower speeds and longer. I'm still trying to get nocturnal sorted and than that would leave me even more living hours really 

Love, Cas