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Author Topic: I can't believe I tried..........  (Read 5085 times)
Adam_W
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Me with Baron von Fresenius

« on: November 29, 2008, 07:32:53 PM »

.....dialyzing with bags and no warmer. The pak on my pureflow ran out the other day, and I had planned to prime a new one today. I had forgotten until I was setting up my machine, but I figured I could just prime the pak while I'm dialyzing with bags. The only problem is I only have one outlet available for my machine, so I have to use the socket on the back of the cycler to power either the pureflow OR the warmer. I wanted to get the pak primed so I could start a new batch of dialysate after I finished treatment. So I figured "Ah, I've got a nice warm leopard skin blanket, I can dialyze without the warmer so I can run the pureflow" WRONG! I can handle cold temperature pretty well, but after only a half hour, even my nice warm blanket wasn't helping. My heart rate dropped from around 90 to 64, and my temp dropped to 93.9. I was even rubbing the dialyzer between my hands to generate heat! So, I just said forget the pureflow, I'm not putting myself through hypothermia just to get my pak done a few hours sooner. Jbeany, and others who have run without a warmer, I do not know how you managed it, because I sure couldn't.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
twirl
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« Reply #1 on: November 29, 2008, 07:58:43 PM »

you sound very smart to me
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jbeany
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Cattitude

« Reply #2 on: November 29, 2008, 08:03:24 PM »

I managed it with an electric blanket, a ceramic heater blowing directly on me, a room that was set at about 80 degrees, and by only doing a 15 L run at a time - any longer, and my teeth started to chatter!
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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.

petey
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« Reply #3 on: November 29, 2008, 08:33:06 PM »

While we were training for home hemo (July  2007), we forgot one time to turn the warmer on, and Marvin ran for a whole treatment with no warmer and on the bags.  By the time we discovered it (yes, Marvin's teeth were chattering), there was only about 30 minutes left in the run.  When we told the training nurse, he said, "Yeah, I noticed the warmer wasn't on at the very beginning but I didn't say anything because I wanted you to learn the hard way.  I purposely let you run cold so you wouldn't make that mistake again."  Yeah, right, the jerk didn't notice it either -- he always says stuff like that so he won't appear stupid.

When we had a problem with the Pureflow one night and had to call tech support, the guy said, "Well, just hook up bags, restart the Pureflow and start another sak for tomorrow, get your treatment in for tonight on the bags, and you're good to go."  When we said that we only had ONE cord (goes to either PureFlow or warmer -- not both) and therefore couldn't run both the PureFlow and the warmer at the same time, the guy said, "No, you have TWO power cords.  We send out two to every patient!  Look around in your stuff."  When we insisted, insisted, insisted we only had one cord, he said, "Well, you're the only patient we have who only has one."  (Another liar, what do you think?)  So, we said, "Send us an extra one so we'll have two."  A couple of days later, we got a package with another one in it, and now we can run both the PureFlow and the warmer at the same time.  Why don't they think of that upfront?
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Run8
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« Reply #4 on: November 29, 2008, 08:59:50 PM »

I guess they have two that only have one cord. I have had two my nurse said it only came with one. I went out of town once and forgot he cord so i made my own with an extension cord and some alligator clips. That worked out pretty good.
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Adam_W
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Me with Baron von Fresenius

« Reply #5 on: November 29, 2008, 09:06:19 PM »

Grr! I wish I had been able to tolerate the cold treatment. Since I had to stop the pureflow in the middle of the priming to plug in the warmer, the machine now says the pak is exhausted and won't let me continue prime. It's my last pak, and I just used my last bags! My NxStage supplies won't be here until Tues, and I can't get any new bags from my centre until Mon. I guess tomorrow will be my day off. Dialyzing with no warmer is definitely not something I want to try again, though. It wasn't that uncomfortable, but my vitals were getting so low I was getting concerned (my temp was as low as 93.9 and anything below 95.0 is considered hypothermia. I was also starting to have some trouble concentrating on simple things, so even though it cost me my last pureflow pak, I know that plugging that warmer back in was the best thing for me to do.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
G-Ma
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« Reply #6 on: November 29, 2008, 09:44:35 PM »

Yes, it was best Adam...We missed tunring on the warmer in training one time too and I was close to passing out from cold when oops it was noticed..it was beyond uncomfortable.
Ann
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
alrightstill
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BAH!

« Reply #7 on: November 30, 2008, 01:37:24 AM »

I managed it with an electric blanket, a ceramic heater blowing directly on me, a room that was set at about 80 degrees, and by only doing a 15 L run at a time - any longer, and my teeth started to chatter!

That's exactly what I do!  Even in the summer I have my space heater blasting right on me (of course during hooking up and getting off I turn it off.. it has a remote, I love it!!). 

Sometimes though I can go a whole treatment with the warmer turned all the way down and the heater off.  Then other days with the blanket, the warmer and the heater I'm still shivering with goosebumps.  I'm very strange that way..  :urcrazy;
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1992 @ age 12 i was suddenly diagnosed with ESRD. 
1992 - 1995: Peritoneal Dialysis
1995: Cadaver Transplant
2001: Kidney rejects, back on PD
2002: too much scar tissue prevents PD from succeeding, go on hemo via permacath,
         transplanted kidney is removed.
Dec 2004 -- 2009t: on NXSTAGE (with the bags NOT pureflow) 6x a week via permacath
Dec 2009: Transplant from a pal
Oct 2016 - present:  Transplant fails, back on NxStage w/pureflow via femoral cath, patiently waiting for next kidney
Wallyz
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« Reply #8 on: December 01, 2008, 06:33:09 AM »

y'all are nuts.  Blue, shivering, nuts.

I try to crank  that sucker as high as I can.
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kidney4traci
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« Reply #9 on: December 01, 2008, 03:00:57 PM »

omg... i have gone on treatment and forgot to turn in the warmer too!  I am always cold anyway but when it started to feel like ice was going in my veins and my teeth were chattering it dawned on me to check the heater setting and ...duh it was off!  It was really hard to warm myself up after that.  I can't see going the whole treatment!!!!!!!!!  BBBBRRRRRRRRRRRRRR!  And I hate it when the pak goes out too, always seems to be a day when I don't have the extra time.  I have at least two spare paks at home because once I had a problem with a pak during priming and needed to throw that out.  I didn't have another to prime and had to wait for delivery, which messed up my schedule.  One of the reasons I do home hemo is I have a busy schedule, and it seems they think we just sit around waiting to do treatments.
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Married - three children.
Alports female, diagnosed ESRD 10/04
11/04  Hemo in clinic
6/07 hemo at HOME! 
2/3/09 - Transplant from an angel of a friend!!!
petey
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« Reply #10 on: December 01, 2008, 04:26:00 PM »

One of the reasons I do home hemo is I have a busy schedule, and it seems they think we just sit around waiting to do treatments.

You are so right, kidney4traci...that's why we wanted home hemo, too -- so dialysis could fit into our schedule and not the other way around.  Usually, it does fit in with us, but sometimes, like when a pak goes out...or a huge leak happens, I get frustrated.  And the NxStage people do act like we have nothing else to do with our lives...oh, if the person on the other end of the tech support line was on dialysis...I bet it would be a different tune they were singing.
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jbeany
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Cattitude

« Reply #11 on: December 01, 2008, 06:07:39 PM »

Yeah, the Fresenius delivery people are the same way - I get a notice of shipping dates with 4 hour windows of time.  Ummmm. . . hello?  I do have a life!  And they won't let the driver just drop it off - someone has to sign for it.
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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.

Roadrunner
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« Reply #12 on: December 03, 2008, 04:40:29 PM »

I have no problem with Fresenius deliveries.  They come between 7 and 9 am so it is easy for me to be there since I'm no early bird.

NxStage is the one I have problems with.  They delivered 1 day early.  I left the house at 6:30  pm for a meeting and came home at 10:30 at night and had all these boxes of dialysate, Saks, and cartridges on the doorstep.  I could hardly get in the house.  It was just beginning to rain, I came home just in time.  You can't call anyone to come and help you lug that all in at that hour of the night.  I didn't go to bed happy but I was tired.  :)

Yesterday I had trouble with my pureflow and after the tech & removed and installed every hose at least 3 times, draining water into a bucket, hitting the stop and go key 30 times because one of the techs told her it sometimes worked he asked me to change the Pac. 

I changed the Pac and had it all hooked up when I noticed that it had expired last June and the tech said I couldn't use it.  I told him it would be fine for testing purposes and he agreed. 

Warning to all of you.  The Pacs must have a short life since I started Nov 2007 and the PAC expired in June 2008.  My new one expires in 7/09.  I better use that one next and save the new one they are sending me.
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kidney4traci
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« Reply #13 on: December 03, 2008, 05:44:38 PM »

I don't have the same problem with fresenius as they do leave it at my door for me. Nxstage does too and they have blocked my storm door too.  Luckily I have a back door. Same problem too with expired pacs. Once I had about four stock piled as they kept delivering two at a time when I had experienced a leak. I put one on and saw the date was going to expire before it would be done. They said that was ok and I didn't have any problems.
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Married - three children.
Alports female, diagnosed ESRD 10/04
11/04  Hemo in clinic
6/07 hemo at HOME! 
2/3/09 - Transplant from an angel of a friend!!!
alrightstill
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BAH!

« Reply #14 on: December 03, 2008, 10:59:35 PM »

I have no problem with Fresenius deliveries.  They come between 7 and 9 am so it is easy for me to be there since I'm no early bird.

NxStage is the one I have problems with.  They delivered 1 day early. 

Don't mean to hijack your thread Adam - but Roadrunner, you think delivering a day early is bad.. my guy came a WEEK early last week!!  He told me that the company (the delivery company I believe, not NxStage themselves) called him frantically that morning saying that I was completely out of supplies...   I wasn't...  i wasn't anywhere near out.  I told him "oh well, at least we're getting it over with now.."  but .. geesh.

Ok.  Sorry.. had to get that rant out.  Back to your normally scheduled postings.. :)
Logged

1992 @ age 12 i was suddenly diagnosed with ESRD. 
1992 - 1995: Peritoneal Dialysis
1995: Cadaver Transplant
2001: Kidney rejects, back on PD
2002: too much scar tissue prevents PD from succeeding, go on hemo via permacath,
         transplanted kidney is removed.
Dec 2004 -- 2009t: on NXSTAGE (with the bags NOT pureflow) 6x a week via permacath
Dec 2009: Transplant from a pal
Oct 2016 - present:  Transplant fails, back on NxStage w/pureflow via femoral cath, patiently waiting for next kidney
skyedogrocks
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Rob showing off his pot of gold!

« Reply #15 on: December 04, 2008, 07:39:40 AM »

Adam, that stinks!  Rob HAS to have the warmer on, he gets cold during the middle/end of treatment.  This is especially prudent when his iron levels drop and he feels the cold even more.  I just ordered a electric blanket for him to use on his upper body (this is where he feels coldest).


Oh and for those with shipping issues, I totally hear you!!!  Our schedule is completely wacky.  We get our supplies bi-weekly, yet they always want to give us a full monthly order.  A couple of times they wanted to send us supplies on back to back weeks.  Ugh!  Our rep still has us down for drain lines even though we have an over supply of about 200 and we told her no more!!
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Wife to Rob who is currently doing Nx Stage Home Hemo Dialysis.

11/17/09 After 4 years on dialysis, Rob received a kidney from our George.  Kidney is working great!  YEAH!!!!
Roadrunner
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« Reply #16 on: December 04, 2008, 03:11:13 PM »

skyedogrocks, You'll be ready for a pandemic. 

The state health inspector told me I should have a stockpile of at least 2 weeks.  She said if I had the room I should have supplies for a month.  I'm OK as long as I have access to clean water.  There is no way I can store a months supply of dialysate.
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