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Author Topic: Well Damn it! Fistula is clotted again!  (Read 11220 times)
kitkatz
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« on: December 08, 2016, 08:28:13 PM »
I toddled off to an ultrasound on a fistula that was working last night perfectly well after dialysis, to find it is clotted now.  I have an appointment tomorrow morning at 6:30 a.m. to get ready for a declot procedure. I am not a happy camper right now.
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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
kickingandscreaming
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« Reply #1 on: December 09, 2016, 04:49:50 AM »
Sorry to hear about your continuing fistula troubles. What a drag!  Wishing you luck.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
kristina
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« Reply #2 on: December 09, 2016, 10:05:41 AM »
Dear Kitkatz,
I am very sorry and I send you my 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  -

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Simon Dog
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« Reply #3 on: December 09, 2016, 10:33:24 AM »
Please let us know how it went.   Not sure of your time zone, so I didn't know when to think of you.
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cassandra
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« Reply #4 on: December 09, 2016, 02:37:12 PM »
How are you doing Kitkatz?
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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
willowtreewren
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My two beautifull granddaughters

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« Reply #5 on: December 09, 2016, 04:05:46 PM »
I can't begin to imagine how discouraging this must be.  :banghead; :banghead;

I am hoping that you have better news by now.  :'(

Aleta
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Wife to Carl, who has PKD.
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Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Charlie B53
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« Reply #6 on: December 09, 2016, 06:45:58 PM »

Since I know very little about hemp, fistulas, etc., I just being switched today from PD to hemo on a Perma Cath, I have a whole bunch pf questions that I will be asking Clinic staff over the next couple three months.

Clotting in a 'vessel' makes me wonder if some of us clot much easier than others.  Isn't there a clotting factor that should be tested and 'thinners' prescribed for those that need it?

They back flushed a line, filled one with saline, the other with heperin.  I assume the heperin line is the one most likely for blood to enter and the heperin keep it fluid, and they do not worry so much about the other.  A fistula or graft entirely different always having flow.

This is a whole new world for me.  I'm sure there is still a lot the Dr's are struggling to figure out.

I hope you can get this cleared and they come up with a plan to prevent future occurrences.
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DayaraLee
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« Reply #7 on: December 09, 2016, 10:03:07 PM »
Hoping everything went well for your procedure! 
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kitkatz
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« Reply #8 on: December 09, 2016, 10:55:32 PM »
Everything went well.  Hurts like hell,  I went to dialysis afterwards and made it through all seven hours barely.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
cassandra
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« Reply #9 on: December 10, 2016, 01:02:41 AM »
Good to here they got it going, sorry for the pain, I'm with you girl. Thinking of you a lot. More good vibes coming your way.

   :cuddle;     :cuddle;


Lots of love, luck and strength, Cas
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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
kristina
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« Reply #10 on: December 10, 2016, 05:42:38 AM »
Hopefully it is going to get better as soon as possible,
thinking of you,
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 ...
MooseMom
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« Reply #11 on: December 10, 2016, 09:17:24 AM »
Ugh.  Just ugh.
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Charlie B53
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« Reply #12 on: December 10, 2016, 05:49:23 PM »

Seven HOURS?  Is this a normal time for you or because you needed that much to get back well within range?

Glad to hear your functioning again.  Pain can be a bitch, but it should pass soon.  Hopefully.

Just before I came in, actually that day I got sick, I received a package from the VA with my Lidocaine patches for when my low back decides to leave me in bed.  Slap one of these big stickies on, within a few hours the pain is reduced, almost gone.  Almost scares me.  Thinking I can easily go ahead and do things I maybe shouldn't do and cause real damage.

Could something like that help?  Ask your Dr.
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PrimeTimer
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« Reply #13 on: December 11, 2016, 06:21:08 PM »
Quote from: kitkatz on December 09, 2016, 10:55:32 PM
Everything went well.  Hurts like hell,  I went to dialysis afterwards and made it through all seven hours barely.

Whoever came up with the saying "no pain, no gain" didn't have a fistula.
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Blake nighsonger
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« Reply #14 on: December 11, 2016, 10:38:38 PM »
Sending signal sentence showing ship shape sincerity Sebastian style!
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Blake nighsonger
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« Reply #15 on: December 11, 2016, 10:59:33 PM »
Not fun at all hope your feeling better. take it easy.
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Rerun
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« Reply #16 on: December 12, 2016, 08:17:52 PM »
And it happens so fast.  You have plans for the week and then a declot screws the whole week up.

Sorry.  You should be good for a while now.

   :flower;
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cassandra
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« Reply #17 on: December 13, 2016, 03:22:27 AM »
Hi Kitkatz how are you?

    :cuddle;
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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
SutureSelf
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Hey there!
« Reply #18 on: December 13, 2016, 09:19:02 AM »
Quote from: Charlie B53 on December 10, 2016, 05:49:23 PM

Seven HOURS?  Is this a normal time for you or because you needed that much to get back well within range?

Glad to hear your functioning again.  Pain can be a bitch, but it should pass soon.  Hopefully.

Just before I came in, actually that day I got sick, I received a package from the VA with my Lidocaine patches for when my low back decides to leave me in bed.  Slap one of these big stickies on, within a few hours the pain is reduced, almost gone.  Almost scares me.  Thinking I can easily go ahead and do things I maybe shouldn't do and cause real damage.

Could something like that help?  Ask your Dr.

Without totally hijacking KK's thread, I suggest you read this

http://homedialysis.org/news-and-research/blog/140-doc-how-long-do-i-need-to-be-on-dialysis

and this

http://homedialysis.org/news-and-research/blog/38-dont-flog-fistulas-slow-hemodialysis-blood-flow

to understand longer hemo treatment.  BTW, why is 7 hours so bad?  You run 10 hours every night on the PD cycler!
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I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
3.0 calcium/2.0 potassium bath
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« Reply #19 on: December 13, 2016, 11:05:06 AM »
Quote from: SutureSelf on December 13, 2016, 09:19:02 AM
BTW, why is 7 hours so bad?  You run 10 hours every night on the PD cycler!

PD is different.  You're able to move around, even stand up, disconnect, go to the bathroom, etc.  I remember one time, hooking up, doing a run, then disconnecting and going out to a movie with some friends.  When I came home, I hooked back up and continued with my treatment.

I do 4 hours on hemo.  By the end of it, I'm really to pull the needles out myself and run. 
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
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HD - Dec 2008-present
KatieV
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« Reply #20 on: December 13, 2016, 11:49:23 AM »
Quote from: Riki on December 13, 2016, 11:05:06 AM
Quote from: SutureSelf on December 13, 2016, 09:19:02 AM
BTW, why is 7 hours so bad?  You run 10 hours every night on the PD cycler!

PD is different.  You're able to move around, even stand up, disconnect, go to the bathroom, etc.  I remember one time, hooking up, doing a run, then disconnecting and going out to a movie with some friends.  When I came home, I hooked back up and continued with my treatment.

I do 4 hours on hemo.  By the end of it, I'm really to pull the needles out myself and run.

I did 8 hour nocturnal home hemo treatments for a while, which I could handle since I was sleeping for most of it.  I agree about the 4 hour treatments!  My butt and back would ache and I'd feel restless towards the end.  My treatments on NxStage now are running about 3:17 and I do fine.  That extra hour is a killer!  Or maybe it's the horrible recliners the clinics have!   ;D
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
kickingandscreaming
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« Reply #21 on: December 13, 2016, 12:25:10 PM »
Quote
BTW, why is 7 hours so bad?  You run 10 hours every night on the PD cycler!

Because I am in my comfortable bed, sleeping through most of it.  It doesn't intrude on my day at all (I do dry days). When I did in-center hemo for 4.5 hours it nearly drove me insane.  The discomfort, the boredom, the constant alarms, the glaring lights. Just dreadful.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
SutureSelf
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Hey there!
« Reply #22 on: December 13, 2016, 01:18:47 PM »
TO: KickingandScreaming and Rikki - did either of you at least read the article in the first link?  Dr. Agar lays out the reasons why running  4 hours or less x3 weekly leads to the bad side effects with higher morbidity and mortality rates.     Running longer and slower patients experience fewer treatment complications. Overall, it actually provides for a better lifestyle if nocturnal is performed at home and even at the clinic.  However, I agree that PD at home is a better option than conventional incenter hemo - at least in the short run since peritoneum functionality for dialysis usually diminishes after 5 years. BTW, at the clinic, it's not so uncommon to be unhooked if one needs to make a pit stop, especially on the extended hours treatment shift.

"The slower, the more gentle, the longer and the more frequent your dialysis treatment is ... the better you will feel, the less symptomatic your treatment will be, the more stable you will find your blood pressure will become, the less will be your pill burden, the more healthy you will feel, the longer you will live, and as you move towards an acceptance of your (sadly essential) treatment, the more at peace with both the dialysis process and yourself you will become." - John Agar, MD
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I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
3.0 calcium/2.0 potassium bath
kickingandscreaming
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« Reply #23 on: December 13, 2016, 01:44:27 PM »
Quote
did either of you at least read the article in the first link?

I have been reading Agar's articles for a while now.  I fully understand why --in hemo-- longer is better.  I wasn't commenting on that.  I was merely commenting on how intolerable I find so many hours tied to a chair.   It was clear--during my hemo days-- that if I got up and did something else, it would merely prolong the agony and i'd never get home.  When my peritoneum goes, I will consider conservative care and death over in-center hemo.  That's how much I consider that life style anathema to my well being and QOL.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Jean
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« Reply #24 on: December 13, 2016, 02:44:46 PM »
 Kit, by now, I assume it is working better, the damned thing. You sure have had a tough road of it during your 18 years of it. Will be thinking of you and if you hadnt moved so far away, would have brought you some dark chocolate. Hang in there baby!!!    :waving;
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One day at a time, thats all I can do.
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