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Author Topic: Succor  (Read 4539 times)
PrimeTimer
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« on: February 10, 2016, 07:31:55 PM »

What provides you with succor?

I am my husband's carepartner doing home hemo. I am also a huge yuge worry-wart. Funny how small things like knowing you have enough gloves and gauze to get you through the month bring such enormous relief.
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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.
Vt Big Rig
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« Reply #1 on: February 11, 2016, 04:38:56 AM »

We have had many problems with my fistula. So every day we are planning a run I worry all through cannulation until we get the machine up to speed. I was so used to seeing bad pressures and readjusting the needles that when we get to speed and DO NOT have to do that I have a great relief.

I relax so much that sometimes I fall asleep before that 15 minute "2".

Luckily dear wife takes it better than I do I think. She, like you, worries about the supplies. Especially SAKs since we have had several failures.
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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
Hootie
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« Reply #2 on: February 11, 2016, 05:40:37 AM »

Sometimes the whole process is an adventure. We all have to take it in stride and enjoy the days with perfect "sticks", no alarms and perfect BP throughout the treatment.
We love those days and appreciate them.   :clap; :bandance; :guitar:
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Caregiver for wife with ESRD and type Type 1 diabetes (almost 50 years).  HHD with NxStage machine January 2015.
Transplanted  December 7, 2016
kickingandscreaming
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« Reply #3 on: February 11, 2016, 06:21:52 AM »

I have had periodic "failures" of my PD catheter--when it simply won't drain.  This usually results in an increase in my heparin intake and so far that has fixed it.  But  I am clearly a major fibrin producer, and when a clog happens, I feel such despair as if I can never trust it again (my PD nurse shares my lack of trust and keeps threatening to send me for a new catheter).  So every time I do a PD exchange and I see the fluid drain "happily" into the drain bag I heave a huge (YUGE) sigh of relief.  Oh, how my standards have fallen!!!
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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
Charlie B53
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« Reply #4 on: February 11, 2016, 07:07:05 AM »


Could that feeling of 'relief' extend to Baxter delivery?

They set back my scheduled deliver one WEEK!   I called and told them this was going to cut it VERY close on solution bags.  That I was going to be SHORT 3 days of Ico.  They sent out that big truck last Friday to deliver one case of Ico.

Monday night's treatment used the LAST bag of both yellow and green.  Done, gone, none for Tuesday.  The truck came at 2 p.m. Tuesday and loaded me up!

I'm glad!

When I started with the Cycler I had 'just' had my monthly delivery of manual supplies.  That was about a year and a half ago.  I have been adding a manual bag to my treatment to use much of it up as expiration dates where Dec 2015 and Jan 2016.  So I have finnaly used most every case and now only have 2 cases of green 2 liter bags.   I could have done manual changes for a couple days if I had to, and was that close to having to.   My next monthly order I will replace a few of those manual cases just so I will have some.  Just in case I ever need them.

Oh,  I did have to dump a case and a half.  At the pull date the bags had a yellowish tint to the solution.  I don't think that would be a good thing to use.  I won't even put it into the hummingbird feeder.  I would hate to make them sick when they come back this year.
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Simon Dog
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« Reply #5 on: February 11, 2016, 07:22:11 AM »

If you rotate your supplied properly, you should never get to the pull date on a bag (unless it's a concentration you inventory but do not use).

You can also order enough extra to cover delays in the delivery cycle or, in the case of NxStage when you send an inventory and they calculate how much you need, under-report a supply you feel they let you run too low on before a new delivery.
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Vt Big Rig
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« Reply #6 on: February 11, 2016, 07:38:11 AM »

in the case of NxStage when you send an inventory and they calculate how much you need, under-report a supply you feel they let you run too low on before a new delivery.

Yep, dear wife figured this out early on and especially when we went from 5 days to 4 days she under reported .... We always have about a week extra on hand, even if they delay delivery.
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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
Charlie B53
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« Reply #7 on: February 11, 2016, 04:06:07 PM »


I had almost of MONTH's supply of manual bags when I started using the Cycler.  Those are the ones that neared the pull date so I started adding an extra bag every night to get them used.  Just ordered 2 cases yellow and next will order 2 green so to have on hand in case of power outages..

I HAD a week extra of Cycler bags, til Baxter set the delivery date behind one week.  I was down to ZERO when the truck got here.


You can bet I will be building a new reserve!
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kickingandscreaming
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« Reply #8 on: February 11, 2016, 04:43:18 PM »

Quote
Just ordered 2 cases yellow and next will order 2 green so to have on hand in case of power outages..

I've been wondering about PD and power outages.  In my town over the weekend, the majority of homes lost power completely (no well water, no electricity, no heat, no phone, no Internet).  I was one of the lucky ones who didn't.  But it got me thinking ab about how I would warm up my (manual) PD bags in case of no electricity.  Any thoughts?  I'd like to feel succor that I could handle this.
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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
Charlie B53
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« Reply #9 on: February 12, 2016, 06:41:50 AM »


Do you have an alternate heating source for your home, or a room in your home for when the power dies in cold weather?

We have a propane fireplace insert in the Living Room.   It puts out enough to keep t hat end of the house tolerable.   It would be far better if we didn't have a Chatherdral ceiling, shared with the Dining Room and Kitchen.  But I can't change that easily.   Actually it wouldn't be that difficult to staple blankets along that beam to seperate the whole area in half.  Another hung in the hallway sort of a cloth door.

I laid my bags out on the hearth to warm.  With propane there was no chance of a hot spark popping out into a bag.

I've taken bags with me when running errands far from t he house.  Laid them across the defroster vents in the dash to warm as I drove.

I haven't tried it, but am told I could hold a bag under my arm, against my chest, under my jacket to warm.   This could take a while.

Window sill on a sunny day.

Wrap it many layers in plastic and lay it in bed with the dog.  He's VERY warm.

Hopefully others will chime in as I am sure there are a hundred and one ways that I haven't thought of.

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