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Author Topic: Fistula question  (Read 10129 times)
cassandra
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When all else fails run in circles, shout loudly

« on: June 17, 2015, 09:16:05 AM »

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
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
talker
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« Reply #1 on: June 17, 2015, 10:00:05 AM »

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.
Quote
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.
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Be Well

"Wabi-sabi nurtures the authentic by acknowledging three simple realities: nothing lasts, nothing is finished, and nothing is perfect."

Don't ever give up hope, expect a miracle, pray as if you were going to die the next moment in time, but live life as if you were going to live forever."

A wise man once said, "Yesterday's the past, tomorrow's the future, but today is a gift. That's why it's called the present."
cassandra
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When all else fails run in circles, shout loudly

« Reply #2 on: June 17, 2015, 10:26:55 AM »

Thank you talker, here's hoping

   :angel;
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
noahvale
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« Reply #3 on: June 17, 2015, 10:49:27 AM »

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« Last Edit: September 23, 2015, 08:23:57 AM by noahvale » Logged
cassandra
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When all else fails run in circles, shout loudly

« Reply #4 on: June 17, 2015, 02:00:56 PM »

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
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Sugarlump
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« Reply #5 on: June 19, 2015, 12:53:01 AM »

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?
Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
cassandra
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When all else fails run in circles, shout loudly

« Reply #6 on: June 19, 2015, 03:33:45 AM »

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  :angel;

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


Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Alex C.
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« Reply #7 on: June 19, 2015, 05:29:15 AM »

Quote
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 ?!?!?!
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Vt Big Rig
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« Reply #8 on: June 19, 2015, 05:45:16 AM »

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 ( :puke;)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
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
noahvale
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« Reply #9 on: June 19, 2015, 05:33:49 PM »

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« Last Edit: September 23, 2015, 09:05:16 AM by noahvale » Logged
Sugarlump
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« Reply #10 on: June 23, 2015, 01:26:23 AM »

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  :angel;

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!!!
Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
kristina
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« Reply #11 on: June 23, 2015, 02:08:42 AM »

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. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
kristina
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« Reply #12 on: June 23, 2015, 02:13:22 AM »

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. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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« Reply #13 on: June 23, 2015, 04:36:18 AM »

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.
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www.bobnortham.com
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Bob's Prescription for Living With Dialysis:
Follow Your Recommended Diet and Especially Watch Your Potassium, Phosphorous, and Fluid.
Stay Active - Find a Form of Exercise You Like and DO IT!!
Laugh Every Chance You Get.
cassandra
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When all else fails run in circles, shout loudly

« Reply #14 on: June 23, 2015, 06:49:00 AM »


"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
« Last Edit: June 24, 2015, 09:56:18 PM by kitkatz » Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Sugarlump
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Posts: 2160


10 years on and off dialysis

« Reply #15 on: June 24, 2015, 12:17:28 AM »

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

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
cassandra
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Gender: Female
Posts: 4974


When all else fails run in circles, shout loudly

« Reply #16 on: July 25, 2015, 01:37:57 AM »

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".

  :o

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
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
noahvale
Guest
« Reply #17 on: July 25, 2015, 02:15:37 AM »

^
« Last Edit: September 23, 2015, 09:04:42 AM by noahvale » Logged
cassandra
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When all else fails run in circles, shout loudly

« Reply #18 on: July 25, 2015, 02:44:17 PM »

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

Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Sugarlump
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Gender: Female
Posts: 2160


10 years on and off dialysis

« Reply #19 on: July 25, 2015, 11:36:49 PM »

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)  :waving;
Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
kristina
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Posts: 5530


« Reply #20 on: July 26, 2015, 09:13:55 AM »

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.  :grouphug;
« Last Edit: July 26, 2015, 09:15:59 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
cassandra
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When all else fails run in circles, shout loudly

« Reply #21 on: July 26, 2015, 09:18:21 AM »

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


     :cuddle;




Love y'all, Cas
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
cassandra
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Gender: Female
Posts: 4974


When all else fails run in circles, shout loudly

« Reply #22 on: August 11, 2015, 09:31:26 AM »

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
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Vt Big Rig
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« Reply #23 on: August 11, 2015, 11:55:59 AM »

THIS does not sound like fun. What is the next step??
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
cassandra
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Gender: Female
Posts: 4974


When all else fails run in circles, shout loudly

« Reply #24 on: August 11, 2015, 03:21:13 PM »

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  ;D

Love, Cas
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
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