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Pod99966
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« on: June 25, 2014, 07:23:26 PM »

Hi everyone, Name is Pod. I have IgAn and went into kidney failure last November. I have started using a Nxstage home unit in February. I got the new upgraded unit in April. By the end of April I started canulation of my fistula. I can't use blunt needles for some reason, but we keep trying. My wife has to hook me up because of the location of my fistula.

Well, that's my intro. Other than hating dialysis, I love motorcycles, videogames, my wife and 3 kids.  :2thumbsup;
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PrimeTimer
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« Reply #1 on: June 25, 2014, 10:35:10 PM »

 :bow;  Well, ALRIGHT!! Another person who hates dialysis! You are our kind of people! Stayed tuned for happenings and information dished out here, never know, might come in handy. And kudos to your wife for being your care partner and getting you on the cycler! I've been putting my husband on the NxStage System One Cycler for about 6 months now. So far, so good.

When you say you got the "upgraded" unit, did you mean the NxStage System One Cycler "S" model? How's that working out for you? Good, I hope!   
« Last Edit: June 25, 2014, 10:36:11 PM by PrimeTimer » Logged

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.
Darthvadar
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« Reply #2 on: June 26, 2014, 04:52:36 AM »

Hello Pod.... We have as great a love for dialysis as you do!....

 :welcomesign;, and visit often... We LOVE fellow D haters!....

Darth, Moderator...
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
Ninanna
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« Reply #3 on: June 26, 2014, 06:09:10 AM »

I Pod and welcome!  I too have IgA and we look forward to getting to know you better :). What video games do you play?
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
Pod99966
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« Reply #4 on: June 26, 2014, 07:26:20 PM »

When you say you got the "upgraded" unit, did you mean the NxStage System One Cycler "S" model? How's that working out for you? Good, I hope!   

I don't know if it's the "S" model. but my original machine would max out at 12 Lph, the new machine uses new saks and will do 18 Lph. It cut my Dialysis time from 3h25min to about 2h 15 min.
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PrimeTimer
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« Reply #5 on: June 26, 2014, 09:24:29 PM »

Pod, does your NxStage cycler have the NxStage logo and an "S" on the upper left corner on the front? If so, I believe you have the new "S" model. If you don't mind me asking, at what blood flow rate do you run? My husband has the (now old) NxStage System One cycler and we run him at a BFR of 350-380 for 3.50 hours using 30 liters of dialysate (from the Pureflow machine) 5 nites a week. He has an arteriovenous fistula, upper left bicep. We use "buttonholes" and he self-cannulates. He's 6 feet tall, dry weight is 101 kilos. He feels okay during treatment and after and works a fulltime job. He has Type II Diabetes (insulin dependent) and high blood pressure, which is what led to his Stage 5 End Stage Renal Disease (ESRD).

Despite dialysis being miserable to go through, hope it is making you feel better. As someone else on here called it, it's a "DD" damn disease!    :stressed;
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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.
Pod99966
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« Reply #6 on: June 26, 2014, 10:05:36 PM »

Yes, upper left corner says "System One S". On my old machine I ran 12 Lph with a Blood flow rate of 350. on the new machine I run 18 Lph with a blood flow rate of 420.

I weigh a bit more than your husband so I do 40 liters of distillate 6 times a week. I told them if I couldn't get the new machine, I was going to o back to in-center dialysis. Next thing you know I have a new machine. :)

My fistula is also left bicep, but it's on the inside. We can get a blunt needle through the skin, it just won't puncture the vein.
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PrimeTimer
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« Reply #7 on: June 26, 2014, 10:33:04 PM »

Thanks for answering so quickly, Pod. Have another question when you have the time...do you know if the machine can go at a blood flow rate lower than 420? We like to go slow, at about 350-380.

As for the blunt needles, are you using 1 inch long needles or shorter? Maybe you need 1 inch. Hopefully they will do a fistulagram and take a picture of the inside of your fistula to figure out why you can't hit your vein. Maybe you need them to do a surgical revision and move the vein up a little closer to the surface. My husband has had a couple of revisions done, they were able to do them in about an hour and he went home and could do a dialysis treatment the same day. Good luck with your fistula, don't give up, have the dialysis nurse or your Nephrologist look at it. Fistula problems like the ones you are having a very common, especially in the beginning. Probably just need a revision or to put the needle in at a different angle. If they do a fistulagram they will be able to tell you how to hit your vein or if your vein needs some work on it. 
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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.
Pod99966
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« Reply #8 on: June 26, 2014, 10:53:53 PM »

you can run at a lower blood flow, but not at max distillate flow. I think at 380 you could run the distillate at around 16Lph. give or take a bit. It took a bit of plating around to find the right numbers. Try to keep the Flow Fraction under 80 or you start to get crazy alarms.
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Bambino_Bear
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« Reply #9 on: June 27, 2014, 03:23:28 AM »

 :welcomesign; Pod!
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I am a caregiver to my wonderful husband,  He is 4p and started PD October 2013. We have several living donors waiting to be tested for a transplant. Dialysis is a bridge to get us where we need to go. 
He had a transplant in November 2019.
Poppylicious
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« Reply #10 on: June 28, 2014, 08:57:23 AM »

 :welcomesign; to ihd.com, Pod!

Poppylicious, Moderator
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
Jean
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« Reply #11 on: June 28, 2014, 01:38:22 PM »

 :welcomesign;
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One day at a time, thats all I can do.
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