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Author Topic: my reply to patdowns post about my graft  (Read 1922 times)
sullidog
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« on: June 18, 2011, 08:48:47 PM »

Thought I'd start a different discussion on this topic as not to throw the other one off topic. I agree, I've read where lower blood pump speeds and longer dialysis are better for the access. My question is how do I convence my neph and his nurse practitioner that me having high blood pump speeds and dialyzing me only 2 hours and 45 mins aren't good. My center believes as long as the URR stays above 65 percent or is too high they can decrease someones time. I think they are doing this to me because I work before I go to dialysis (I work in the morning and then go to dialysis) I don't like it the other way around because if there's a bad treatment day I don't have to worry about calling off work for that day. My neph also says that laying on your access isn't going to clott it off, that it clotts off do to stenosis and nothing else, I disagree because I've read where sleeping or doing anything that requires tite clothing on that arm is a no no. I'm going to talk to my vascular surgeon to see if he agrees with me about the lower blood pump speeds. I just wish I can convence my neph of this and that I can run longer.
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May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
august 25, 2009, access placement
January 16, 2010 thrombectomy was done on access
jbeany
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« Reply #1 on: June 18, 2011, 08:54:21 PM »

How high is your pump speed?  I actually managed to convince my neph to bump mine up when I had to go back in center, to match what I had been doing with no problem on NxStage at home.  I wanted as much cleaning as possible, and they wouldn't go past 4 hours because of sheduling.  I was getting metal mouth when I had to switch back to in center, and just jumping from 300 to 350 made a huge difference for me.

I'd agree, though, that 2 hours and 45 minutes worth is shorting you of a lot of cleaning.  I know 65 is the bare minimum requirement, but for heaven's sake - they already have you hooked up, why not stay and make it worth the trip!
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

Ang
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« Reply #2 on: June 18, 2011, 09:07:15 PM »

350 pump speed or high will give you a fair cleanout vs slow pump speed will salvage your fistula for longer

what you want,vs what they'll give you :stressed; :waiting; :pray;
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live  life  to  the  full  and you won't  die  wondering
tyefly
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This will be me...... Next spring.... I earned it.

« Reply #3 on: June 18, 2011, 10:17:35 PM »

Yes I agree with Ang.....   what you want and what they will allow you to do  is another story....  My Nxstage clinic wanted me to run for 430BF and nothing else.... and they keep telling me that is what my doctor wanted me to do.... I was getting really high pressures doing that and alot of alarms....  everytime I would stand up or move an alarm.... I had to sit completely still for the 4 hours or so.... no good.... so I convienced then that I would run a Blood flow speed that would keep my pressures down around 200 or less and they say fine... so I ran at 350 and had to run longer but it was worth it...  my lab's were better and my pressure were good and hardly no alarms..   

To me I would want to fight , argue, debate anything that would help me do what I felt was the right thing... My fistula is my life line and everyone knows that when you run at high speeds you run the risk of have many problems with your fistula....  You may have to find another Neph.... possible another clinic.... but keep pushing for better dialysis and a long lived fistula
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
sullidog
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« Reply #4 on: June 19, 2011, 05:21:02 PM »

My pump is 450, but recently we had to cut it to 350 and switch to 16 gage needles do to my stenosis, this without my nephs approval, shhhh don't tell.
Logged

May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
august 25, 2009, access placement
January 16, 2010 thrombectomy was done on access
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