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Author Topic: Handling Changes to Your PD or Hemo Regimen......  (Read 852 times)
Mr Ken
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« on: November 16, 2018, 06:40:56 PM »

As the subject states how goes the dreaded we  have to change you prescription by increasing the amount and or times..... For Hemo it is not to bad as it is not so much intrusive time wise. However for Peritoneal dialysis it becomes a bit more tricky..... Increase in amount of fluid to dwell causes a chain of changes...  I will use myself as an example...... They want to increase the amount of dialysate to 2800ml per exchange and do 5 exchanges!!!!! Besides adding quite a bit of time for the extra exchange cycle which is a big thing...... it will also impact the amount of dialysate solution bags. You need 14000ml... The largest amount in any given bag is 6000ml so you need two 6000ml plus a 3000ml.... For the drain bags you need two. One drain bag only holds 15000ml. More inventory to order and store...... 16 boxes of 6000ml and 8 boxes of 3000ml.....  I have to decide if I am going to go with 4 machine exchanges then do a manual exchange during the day time............. If you do a manual exchange you will have that solution in you which is not comfortable and it takes longer to fill and drain negating the benefit of time convenience.

All in all I have reach the upper limits of reason-ability I am not going to agree to any increased anything after this last change should they say we need to..... They do not like it to bad. The process is getting a little too crazy..... When does one really say enough is enough???

Ken
   
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Cupcake
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« Reply #1 on: November 16, 2018, 07:05:54 PM »

I hear ya. I did PD for almost 2 years and was never brave enough to do the first fill on the cycler, cap off and finish my evening, then hook up again when time for the first drain. I also wasn't very successful doing all manual exchanges during the day--couldn't eat and walk around with 2000ml in my tummy. was in a perpetual state of nausea/ready to hurl. Can't imagine what 2800ml would feel like.
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PD for 2 years then living donor transplant October 2018.
Riki
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« Reply #2 on: November 16, 2018, 07:53:24 PM »

2800mls seems excessive to me.  I only did 2000mls, and that was plenty.  When I was a kid, I did 1200mls, and that was tricky to do, because everything was measured manually.  It's hard to explain, but it had to do with where the rod in the heater box to hang the heater bag was.  We had it marked with a piece of tape so we could get it every time.  the machine itself ran on gravity, which was a real pain in the butt, and once you were connected to it, there was no coming off until you were done, 10 hours later.  So glad that technology has advanced since then.

As for my treatment now, the nephrologists know not to make any changes without consulting me first.  A few years ago, when we still used the Gambro Phoenix machines, we could be put into a step profile, which would stop pulling fluid and give a 15 minute break every half hour.  I thought it was great, but it had to be ordered by the doctor.  One day, one of the nurses mentioned that it had been discontinued.  When I asked why, she said she didn't know, just that the doctor had discontinued it.  I stewed until the doctor showed up.  I asked him why the step had been discontinued, and he said that it was unnecessarily taking up nursing time, and he considered it a housekeeping issue.  I lost it, and I'm an agry crier, between sobs, I was yelling at him.  I don't remember what I said exactly, but it was something along the lines that it was my life and while he got to go home, I had to live with the housekeeping changes he decided to make.  Now, every change is run by me before it's made, or I'm being told why the change is made, instead of them just making the changes and going on with their business.
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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
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HD - Dec 2008-present
kickingandscreaming
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« Reply #3 on: November 18, 2018, 04:47:00 PM »

My PD RX has been changed multiple times reflecting changes in my clearance tests.  I face each test with total trepidation because the day will come wheyclern I can no longer do PD and they will (try to) put me on Hemo and I will refuse and choose hospice instead. That's how much I hate Hemo.  I have a pretty hefty prescription.  I do one manual exchange (2000ml), dwell, and then drain on the cycler, followed by 5 cycles on the machine holding 2400ml each.  Then after that I do a final fill/dwell/drain on the cycler before I'm "released."  It's a lot.  I'm only 5'4" +/- so 2400 is a lot to hold.  I'm used to it but I don't like it.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
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Mr Ken
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« Reply #4 on: November 18, 2018, 05:34:25 PM »

My PD RX has been changed multiple times reflecting changes in my clearance tests.  I face each test with total trepidation because the day will come wheyclern I can no longer do PD and they will (try to) put me on Hemo and I will refuse

I give you the upmost honorable credit. I am going through the same spiel clearance numbers are not what they want to see and still have fluid........... Lets increase the volume then add another exchange.... Wow hold on... so we are going to keep going up and up and up...... No no no..... Talk to the peritoneal cavity not me about squeezing out more.......

We are on the same train of thought about Hemo though  :2thumbsup; Been doing PD for four and half months... at least the cursing has gone down a bit with the MESS... I keep saying how long do I gotta do this for... How long............ Is this my one way journey ticket... PD....... Okay who upstairs is punishing me. This is not funny anymore........ May be this is all just a bad dream and I will wake up and wet myself in bed....... Big puddle.......  :laugh:

Ken 
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GA_DAWG
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« Reply #5 on: November 20, 2018, 09:32:05 AM »

Believe me, I understand the anger and sometime depression, but I still think dialysis is best approached froma more positive standpoint that it is what we have to do in order to continue to have time with our family. Rather than a curse, I try to approach it as a blessing that allows me more time with those I love.
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Riki
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« Reply #6 on: November 22, 2018, 10:57:26 PM »

Believe me, I understand the anger and sometime depression, but I still think dialysis is best approached froma more positive standpoint that it is what we have to do in order to continue to have time with our family. Rather than a curse, I try to approach it as a blessing that allows me more time with those I love.

I agree.  I complain a lot, but I'm grateful for dialysis.  It's given me a chance to go back to school, and over the years, I've learned how to adapt.  I even do a bit of travelling.  It takes a bit more planning, but I do it.

I have a friend, who's since been transplanted, but he used to say that for him, dialysis was like a part time job.  The pay sucked but the benefits were awesome.
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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
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