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Marilee
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Hubby's a PD Person - I'm 'support'

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« on: September 12, 2019, 09:54:23 AM »

Ever since hubby lost his residual kidney function last summer and had to increase PD to 5 night cycles plus a day-long dwell, we've been unable to get his protein levels up. I've increased protein at every meal, we've boosted snacks and he's gained some weight, but the Albumin levels in his blood work haven't normalized. I made a chart to show what I mean: See attached.

Anyway, I've been researching online and came across this article: https://aminoco.com/amino-acids-kidney-disease/ and at the bottom, it talks about a test done with dialysis patients (Hemo and PD) who received protein supplements. It helped with Hemo (raising blood levels .22g/dl) but not PD (only .01g/dl). It doesn't say how many cycles the PD folks were doing, but I suspect that it's the long-dwellers (night-and-day) that are constantly losing amino acids and just can't get ahead of the curve. The study makes me think that no matter how much protein they ingest, it'll get lost in the PD.

Well, that's a discouraging thought, but I'm discouraged. I've bumped his protein month after month; He's gained weight and it's not water (no edema - thank goodness), and he's not happy about that because extra weight is uncomfortable. The dietitian just keeps trying to scare us with warnings of heart failure, calcium overload and rates of death with levels below 3.5g/dl, but her only solution is to drink more shakes or eat more snacks. But adding more doesn't seem to be helping!

Does this match what other around-the-clock PD users experience? It makes me wonder if we should have a day off the day dwell to kinda play "protein catch-up".... but his KT/V is just barely good enough (1.7), so I doubt we can afford to do that... aaargh!
« Last Edit: September 12, 2019, 10:39:38 AM by Marilee » Logged

As my hubby would say, "Don't let what you can't do get in the way of what you can."
cassandra
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« Reply #1 on: September 13, 2019, 10:17:29 AM »

Itís a long time ago I did PD but is there no Nutri-neal PD fluids to get his Albumin up?


Love, 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
Marilee
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« Reply #2 on: September 13, 2019, 12:39:22 PM »

Well, now, Cassandra, this has opened up a can of worms - thank-you!

I went looking and learned that Nutrineal (from Baxter) is not listed on their USA website, but it IS on their non-USA website. Now I have a project: To discover why and what do I need to do to get it because it sounds precisely like what we need.

Thanks so much for this info!
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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."
cassandra
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When all else fails run in circles, shout loudly

« Reply #3 on: September 13, 2019, 05:19:22 PM »

I hope you can get it Marilee, and Iím glad to have been of help than.


  Love, 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
Whamo
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« Reply #4 on: September 23, 2019, 07:04:36 AM »

I'm on a similar PD schedule and my protein level is 3.9, almost good.  I supplement with perfect amino acids (99% bioavailable as compared to eggs, 50%).  Search for them online.
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Marilee
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Hubby's a PD Person - I'm 'support'

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« Reply #5 on: September 23, 2019, 07:48:11 AM »

Thanks, Whammo! I'm glad to be able to chat with someone who is having success with supplements.

I checked out supplements, including this brand, but I didn't really know how much to use. Each tablet supplies 1 gram of protein (8 essential amino acids), so to get as much as in an egg, he'd have to take 7 tablets, at about $1.75. If I factor in the bioavailability of this brand (99% compared to 48%) he'd only need about 3.5 tablets to replace a single egg, so around a dollar or so (I'm rounding).

But I don't really know how to figure out how much to do per day... 4 tablets with each meal?  I asked the renal folks if there was a way to know how much the PD was removing and they said no, just keep boosting.

May I ask, how much do you take and how much did that boost your numbers?
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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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Hubby's a PD Person - I'm 'support'

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« Reply #6 on: October 13, 2019, 08:44:12 PM »

It turns out that "Nutrineal" by Baxter is not available in the United States, and they have no plans to make it available.

However, I contacted the AAKP and they let me know about a company called Pentech Health. They make a formula called "IPN Therapy" where they take bags of PD solution and inject them with amino acids and ship those bags to patients to use instead of one of their regular bags. I have shared this info with our renal folks at the VA Hospital: Perhaps it may become an option for hubby (don't know yet).

But I wanted to get the info onto this website, too, in case it's helpful to others: https://proplete.com/idpn-ipn-therapy
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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."
Charlie B53
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« Reply #7 on: October 15, 2019, 06:40:12 PM »


I was on PD 3 1/2 years until an infection caused me to lose my cath and make the switch to Hemo.

Fortunately for me I have always been a meat eater, at every meal.  Eggs in the morning, red meat or chicken for lunch and dinner.  I did add a heaping teaspoon of Vanilla Protein Powder to my morning cup of coffee.  It worked much like using a powdered creamer so I was OK with it, and it added that little bit of additional protein to my daily diet.

WalMart has a variety of flavors in this brand but looking at the Pho and Pot, only the Vanilla are in an accepted range.

PD does stip out protein and potassium, or did for me, so I did have to take potassium supplements and make sure I ate lots of meats and eggs.
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Marilee
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Hubby's a PD Person - I'm 'support'

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« Reply #8 on: October 15, 2019, 07:52:27 PM »

Thanks, Charlie!

I also found some of the protein waters (like "Protein2o" and "Premium Protein") can be helpful for boosting protein without a ton of calories or added chemistry.

A little here, a little there, it all adds up!

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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."
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