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Author Topic: Where do you store the Supplies.. I.e. crap??  (Read 1053 times)
Mr Ken
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« on: December 30, 2018, 08:55:14 AM »


Being politically correct instead of saying “store the crap.” Latest bout with the Dialysis center that does PD  has to do with trying to minimize visit time. My current routine doing PD is obviously doing it at night -  every night…… Seven days a week nightly…. All night long……. Did I mention it is done at night …..  During each month I then have to go to the clinic for blood draw, then go back another day for  “clinic visit”, and finally got to be home for supply delivery… If you have not been counting that is three days each month that I have to set aside time do these tasks….. While one may argue that is the price to pay for doing PD I argue that is pure bullcrap!!!! I am trying to free up some time with this dedicated endeavor. One way is to have the delivery of supplies done every other month Instead of monthly. Baxter does not mind doing a 56 day delivery as it is an option they would do IF THE DIALYSIS CENTER AUTHORIZED IT. IF THE DIALYSIS CENTER AUTHORIZED IT. IF THE DIALYSIS CENTER AUTHORIZED IT. Yes the dialysis center has to okay it… Never mind that a monthly delivery may be inconvenient for the patient.

Onto the discussion about doing a delivery I told the nurse of the dialysis center that I would like to do the 56 day delivery instead of monthly delivery. I MADE THE BIG MISTAKE OF SAYING THAT THE DIALYSATE BOXES WOULD BE STORED IN THE GARAGE NOT IN THE HOUSE. MY BIGGA MOUTHA… MAN ALIVE I SHOULD NOT HAVE SAID THAT!!!!! Nurse said NOPE cannot store in garage if it is cold… I said it does not freeze and I would keep some boxes inside as they are used I would move the boxes in the garage inside. NOPE CANNOT DO THAT. I talked to Baxter about this and they had no problems in keeping the boxes in the garage as long as they do not freeze.  I and the Dialysis center once again are at odds…….  This discussion started in November and I planned on starting the every other month delivery starting in January. Nephrologist go the call again…….. and I got a call from the Nephrologist again….  So where do you keep the dialysis supplies???

I did not tell you about when I dumped off the extra dialysate boxes, four, on the entrance in the dialysis building did I  - that also probably prompted the call into the nephrologist now. I could not use the 1.5% or the 4.25% solution and the house is not a warehouse for extra none usable supplies. Months earlier I dropped off 22 boxes of 1.5% solution that I could not use…. Perfectly good in unopened boxes sealed in the bags. Was not going to dump them or take the time to cut open 44 bags and drain that crap……   
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cassandra
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« Reply #1 on: December 30, 2018, 10:36:32 AM »

What can I say to relieve your agro, and anxiety. When I did PD my fluids were stored in an outbuilding, freezing or not. The fluids didn't freeze as they are full of salt, and sugar.
You could try and ask your bloods to be done on the same day as your 'clinic' visit. Yr dr could call you if something need changing urgently.


Good luck, 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
       still on waitinglist, still ok I think
Mr Ken
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« Reply #2 on: December 30, 2018, 12:23:00 PM »

What can I say to relieve your agro, and anxiety. When I did PD my fluids were stored in an outbuilding, freezing or not. The fluids didn't freeze as they are full of salt, and sugar.

The dialysis center staff are being stuck up about it. There is no question about it. Baxter said it would be fine keeping the product in the garage. I would go more with what Baxter says than what a couple of the 7 dwarf family members say. Dopey and Grumpy.

You could try and ask your bloods to be done on the same day as your 'clinic' visit. Yr dr could call you if something need changing urgently.

LOL..... Already suggested that a long time ago...... I said Why not do blood draws same day as a clinic visit then the following clinic visit review the previous blood draw results. If something is drastically off notify the clinic or the patient...

"NOPE CANNOT DO THAT...."

WTH!!!!!

Going into 2019 if I am available I will show up..... If not available.... OH WELL!!!

That is absolutely asinine that you need to spend one AM just to go and get blood drawn then another am for clinic visit, and finally a third AM waiting for delivery of supplies EVERY MONTH!!!!!   I am not being unreasonable here...... One of the main points of doing PD is to lesson the amount of time dealing with this process but PD is proving to be much more time consuming then Hemo minus the side affects of Hemo...

Good luck, Cas

January clinic visit will be some fireworks going off....... around the 16th.... The Nephrologist did offer to have the clinic visit the same day as the delivery so it is only one AM being tied up.... That would not work as the delivery dates change and also the Nephrologist has office hours so that would be impossible. Much simpler to just do the delivery every 56 days....... Lots of boxes but it would eliminate 1 day AM every other month... BIG FIREWORKS!!!!!!   Who is the patient here..... To far reaching they are....

Ken
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UkrainianTracksuit
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« Reply #3 on: December 30, 2018, 01:38:57 PM »

Ken, your frustrations are totally valid. Sometimes it seems like "pulling the cranium from the rectal orifice" gymnastics of dialysis staff are something to behold. I have nothing to offer as in "where to store the supplies" for PD since I've heard other patients keep them in a garage, as long as they didn't freeze. But you know, clinic staff have to cross their i's and dot their t's to cover their own behinds.

It seems really redundant to have to do labs and then come in for an appointment so, I hope your fireworks work something out.

I distinctly remember a conversation with the charge nurse weeks prior to transplant. We were discussing next steps for vascular accesses and she told me about PD (again) as an option. I said nope, no room at home. She retorted, "One day you're not going to have a choice and have to move to have room. She didn't like it when I said I'd move into PD training room then.
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Charlie B53
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« Reply #4 on: December 30, 2018, 06:18:52 PM »


I did PD for 3 1/2 years before an infection forced me to lose my PD cath and switch to Hemo.

Boxes lined one side of the hallway to the bedrooms.  Monthly deliveries.  I never heard of a bi-monthly schedule.  I doubt if I had enough room for 2 month supply.


My infectrion occured immediately after a monthly delivery.  Baxter nor my clinic would take any product back, even though nothing was opened.  Shame.

Since my PD Clinic was near the VA Hospital it was still over an hour from the house.  Month appt they took my blood samples and called me a day or two later if there was any need to change anything.  No second trips.  The worst part was that every third month saving my used bags so they could measure and test them.

I really lilked the freedom of diet and fluids that PD allows.  The switch to Hemo made me make serious changes in both diet and fluids.  But I really like the far less time I now spend.  Three days, an early seat time, get in, get done, get out.  I works for me.
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Mr Ken
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« Reply #5 on: December 31, 2018, 07:43:51 AM »


Boxes lined one side of the hallway to the bedrooms.  Monthly deliveries.  I never heard of a bi-monthly schedule.  I doubt if I had enough room for 2 month supply.

My infectrion occured immediately after a monthly delivery.  Baxter nor my clinic would take any product back, even though nothing was opened.  Shame.

So much wast that is why healthcare is so expensive. If a box is taped up unopened and the material is packaged in the box there is o reason why the items cannot be used elsewhere. The product is not contaminated in any way. I would have dumped them off in the parking lot of the center. Here you go DEAL WITH IT!


Since my PD Clinic was near the VA Hospital it was still over an hour from the house.  Month appt they took my blood samples and called me a day or two later if there was any need to change anything.  No second trips.  The worst part was that every third month saving my used bags so they could measure and test them.

That was reasonably of them. I offered three solutions to cut down on the three day a month ordeal and they said NO. Now I am going to review my suggestions with the nephrologist and say I am not tying up three mornings a month going forward dealing with this. I will not come. You figure it out now and deal with it.



I really lilked the freedom of diet and fluids that PD allows.  The switch to Hemo made me make serious changes in both diet and fluids.  But I really like the far less time I now spend.  Three days, an early seat time, get in, get done, get out.  I works for me.

I never had issue with diet. Always been and continues to be the fluid. I get thirsty and to have someone say don't drink is like telling an elephant not to touch the pail of peanuts that is two feet away from the elephant trunk. You know what the elephant is going to do and may be even whack you with its trunk.....

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KatieV
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« Reply #6 on: December 31, 2018, 12:27:00 PM »

My husband and I lived with my parents for 18 months while we saved up to buy a house.  Though we moved a year ago, the NxStage supplies are still being delivered to their house.  My mother doesn't work, so she schedules the delivery when she'll be home.  They live 20 minutes from us, so it's not a big deal to run up and grab them (or like yesterday, they brought them over after church).  It does mean handling the boxes additional times, but I have a strong husband!   ;D

I'm annoyed because there were only 5 boxes in this month's order - 2 cases of cartridges, 2 cases of SAKs, and a box of premade.  I didn't have time to do a complete inventory to see how low I'm on everything (will tomorrow), but I only have 26 cartridges to last until next month's order and I'll use 25 of them!  Not the first time NxStage has given me just barely enough to get by!   
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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!
~~~~~~~~~~~~
Simon Dog
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« Reply #7 on: December 31, 2018, 06:16:14 PM »

Quote
ut I only have 26 cartridges to last until next month's order and I'll use 25 of them!  Not the first time NxStage has given me just barely enough to get by!   
When this happened 2 me, I would ask NxStage to UPS a case.   NxStage would call the RN at the clinic and ask permi$$ion to bill for the extra supplie$ (if it was a NxStage mistake, I would email the clinic RN and she would use this to negotiate the payment issue).   I was never declined, and always had a UPS shipment when I was running short between deliveries.
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sahern
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« Reply #8 on: January 01, 2019, 02:22:55 PM »

Last year I had trouble getting supplies from Baxter for PD.  It was a manufacturing problem.  When they finally got back to full capacity I ordered extra in case it happened again.  I have the room to store it so that helps.  The wife is not happy but at least I will not run out.  The only problem I have is when they are short some of an order they will ship it UPS.  I live in Alaska and in the winter it is dropped off outside the door and it freezes.  It can be -20 degree out side or colder.  I have had boxes come off the truck frozen.  The backs of the trucks are not heated.  No matter how many times I call Baxter and tell them not to ship it this way they still do.  When I get frozen boxes I just throw them away what a waste.












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Riki
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« Reply #9 on: January 05, 2019, 03:52:21 AM »

When I was a kid, my family lived ina 3 bedroom trailer that had a porch built onto it.  This porch was where the solution was stored, and all the little supplies like clamps and dressing supplies were kept in cupboards in the bathroom.  It made for a bit of a tight fit, but we made it work.

When we moved into our house, my tv sat on top of a stack of boxes of drainage bags, so as we used the bags, my tv would get lower *L*

When I had to give up PD in 2008, we gave the cycler and any supplies we had to the dialysis unit to use for training.  As far as I know, that cycler is still there
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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
PD - May 2004-Dec 2008
HD - Dec 2008-present
Marilee
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« Reply #10 on: February 17, 2019, 09:05:23 AM »

The best idea I've heard of isn't yet available - as far as I know.  Baxter and other manufacturers are working on a dialysate-concentrate that would allow the mixing of solution right at home, reducing the amount of space to store boxes, the cost of delivering to all those houses, saving the hassle of schlepping 25 pounds of liquid from storage to station several times each evening and I'm totally looking forward to that day.

Anyone else heard of this? Any news on their progress?
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As my hubby would say, "Don't let what you can't do get in the way of what you can."
Marilee
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« Reply #11 on: February 17, 2019, 09:12:59 PM »

Oh, here we go, according to Baxter in January, clinical trials have begun to test this new make-your-own dialysate: https://www.baxter.com/baxter-newsroom/baxter-starts-us-clinical-trial-demand-peritoneal-dialysis-solution-system .
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As my hubby would say, "Don't let what you can't do get in the way of what you can."
kickingandscreaming
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« Reply #12 on: February 18, 2019, 05:37:04 AM »

I'm all for this "revolution" in technology.  But it's going to mean lots of plumbing work to make it work-- at least in my space.  And I hear the Amia doesn't have patient line extensions so you can't move around the house during D.
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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
Marilee
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« Reply #13 on: February 18, 2019, 06:00:37 AM »

I'm all for this "revolution" in technology.  But it's going to mean lots of plumbing work to make it work-- at least in my space.  And I hear the Amia doesn't have patient line extensions so you can't move around the house during D.
Yeah, I don't know about the plumbing part, or how long the input hoses will be (I'm hoping for an adapter to 'T' off the nearby bathroom faucet line). The Amia that we use has cartridges with patient lines that are 20' long, so with the machine parked as far away as possible for that hose to still reach, my hubby has about 40' of walkable area (pretty much to the bathroom and back).
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As my hubby would say, "Don't let what you can't do get in the way of what you can."
Shaks24
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« Reply #14 on: February 18, 2019, 07:57:37 AM »

There is another innovation for PD that is in the works and it recently got a nod from the FDA to move forward. Its a portable PD device that uses sorbent to reconstitute used PD fluid resulting in the reduction of amount of fluid used for treatment. So instead of the 8 -12 liters of PD fluid one might use per treatment, it is reduced to 2 liters per treatment. The system is called AWAK and has undergone successful testing in Singapore. Plus its a portable device so you can wear it moving around or still use it at night. It would mean a huge reduction in the amount of dialysis fluid you would have to store.

https://www.meddeviceonline.com/doc/awak-technologies-wearable-peritoneal-dialysis-breakthrough-device-designation-fda-0001
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Congestive heart failure 2011
Currently about 19% Kidney Function
September 11, 2013 PD Catheter and Fistula Surgery
September 27, 2013 Started PD
Marilee
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« Reply #15 on: February 18, 2019, 08:39:28 AM »

Wow, Shaks24, that's very interesting! I went to the company's website (http://awak.com/product/ ) to read a bit more, too. It kinda reminds me of those portable oxygen generators. My hubby is awoken about 4 times each night by the machine to move so that it can drain properly and this wearable unit would solve that, giving him a better night's sleep. Now THIS is exciting!

Thanks for the share - I'll be looking for this for sure.
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As my hubby would say, "Don't let what you can't do get in the way of what you can."
Shaks24
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« Reply #16 on: February 18, 2019, 09:04:46 AM »

I think this AWAK system and the implantable artificial kidney are two very exciting opportunities for those of us on dialysis. Lets hope they continue to make progress in making these wonderful opportunities a reality for us in the near future. I just spent and hour draining some expired manual bags in my yard. I don't do manuals but keep a supply on hand just in case of infection or power outage or what not.  The amount of supplies we have to handle is crazy. It would be so nice to get some relief from that.
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Congestive heart failure 2011
Currently about 19% Kidney Function
September 11, 2013 PD Catheter and Fistula Surgery
September 27, 2013 Started PD
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