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Hootie
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« on: March 31, 2016, 08:41:27 AM »

We are now into 18 months on HHD. Things have gone pretty well...Until this month until phosphorous shot past the good range to 6.7 at mid month (from within range on 3/2) and now 8.4 with this week labs.

When it hit 6.7 at mid month we changed from one of the protein powders and cashew milk along with some other changes. It went up from there....diet is fine now but phosphorous still increasing. Could it be  to kidneys failing further behind and not able to eliminate? Seems like binders will be starting in the next few days for the first time.
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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
cassandra
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« Reply #1 on: March 31, 2016, 10:06:40 AM »

If your diet hasn't changed, it really is a possibility. To be honest, I don't know any HD patient who doesn't use binders.
Don't let your phosphates get too high though. I hope you can start those binders soon.

Sorry.  :cuddle;

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
Charlie B53
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« Reply #2 on: March 31, 2016, 02:54:31 PM »


I was very surprised to learn how much phos is in most all foods, some far more than others.

I Googled 'Phosporus in foods' and near the top was a link to a chart from the AKA American Kidney Association IIRC.  This multi-page document listed most common foodstuffs along with the potassium, phosporus, sodium, calories, etc.

It was a real eye-opener for me.

It is in the kitchen so I can easily check what I am about to eat and help me to take enough binders.

I am still learning.
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Fabkiwi06
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« Reply #3 on: March 31, 2016, 08:57:46 PM »

My phosphorus is almost always high, regardless of diet  adjustments and loads of binders. It could also be due to your PTH. When one is elevated, the other tends  to go with it.
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surprise kidney failure - oct. 2015
emergency hemo - oct. 2015
switched to pd - dec. 2015
transplant list - apr. 2016
cassandra
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« Reply #4 on: March 31, 2016, 11:15:14 PM »

Hi Fabkiwi06 I read this

"Secondary Hyperparathyroidism. This is usually the result of another condition which lowers the calcium or vitamin D levels. Frequently it is associated with chronic kidney disease. The kidneys help with the conversion of vitamin D to its biologically active form, which is known as calcitriol (1,25-dihydroxycholecalciferol). If someone has kidney disease, then both the vitamin D and calcium levels can drop, and because of this the parathyroid glands will try to compensate for the decrease in the levels. In addition, when the glomerular filtration rate (GFR) falls, the phosphorus clearance decreases significantly, leading to hyperphosphatemia, and this is thought to be the principal cause of secondary hyperparathyroidism (2)."

 Hootie ,as you are doing HHD is it poss to increase the length per session? Over the Xmas period I changed my sessions to only short (2,5 hrs) and my phosphorus rose. I used to do 1 or 2 sessions long (5 or 6 hrs) per week and phosphorous was low normal. After taking micro biota my PTH dropped too much so I could decrease the amount of Cinacalcet.

Good luck to the both of you, 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
Charlie B53
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« Reply #5 on: April 01, 2016, 05:09:25 AM »


Secondary Hyperparathyroidism is NOT what I have.  Dr's have tried three different Vit D's, one was calcitrol, in attempt to raise my Vit D which was/is so low as to be barely measurable.  Yet my calcium has/is high, running 10.2, the max, and often a bit over.  The Vit D's pushed my calcium even further to my new max of 11.7.  Calcium began forming crystals in all my joints.  Pseudo gout.  It is Hell.  Over 7 months I could barely move, stand, or even turn in bed.  Thankfully I'm back down to 10.4.   All this time my phos holds a steady 3.5 IIRC.   I don't know what I am doing right/wrong.  I am still learning and trying to figure it out.

The body is a unique organism that is interdependent on many many things.  The vitamin, chemical, mineral levels all must be balanced, too much, or too little of any one, or more, and this delicate balance goes off-kilter.  Medication is so often a matter of trial and error in attempt to NOT upset the balance even further while trying to raise or lower any one item that is out of range.

Children are not able to communicate their needs and sometimes observed eating something we normally would not ever eat.  They don't know what or why they are doing it, but they are driven to supply the body with an essential element that they are not getting through their usual diet.

We need to learn to listen to that inner child.  Do you have any cravings?  A suppressed urge to eat something, you cannot explain, you just want it.   Listen to that, what is it, what is it made up of, what essential element may be in that item, Could that be what your body needs?
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Charlie B53
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« Reply #6 on: April 01, 2016, 11:06:58 AM »


I have to admit, my memory is NOT anywhere near what it once was.

I finally remembered to get that booklet from the kitchen.  It is NOT from AKA it is from AAKP. American Association of Kidney Patients at aakp.org

They have this Nutrition Counter available for download, a pdf at;

https://www.aakp.org/education/brochures/item/aakp-nutrition-counter-a-reference-for-the-kidney-patient.html

This is also available pre-printed for a fee.  They have a whole library of booklets on many topics involving kidneys and dialysis, most all are for a fee.

This Nutrition Counter list a LOT and can be very helpful if you print it and keep it handy.
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Whamo
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« Reply #7 on: May 13, 2016, 12:45:04 PM »

 :Kit n Stik;  When I hear the word phosphorus I cringe.  My last test was high 2.5.  I should be under 2.0.  Today I went on my get the number under control strategy. I drink an egg white protein drink with cranberry aloe and fiber.  I eat a very low phosphorus oatmeal protein bar.  And then another serving of either one for dinner.  I take binders too.  I take eight pills of calcitrol for my calcium problem.  My calcium numbers are in range, but they were low for weeks after my thyroid surgery. 

I hope to have my numbers in range by Wednesday.  We'll see.
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SutureSelf
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Hey there!

« Reply #8 on: May 13, 2016, 03:40:15 PM »

:Kit n Stik;  When I hear the word phosphorus I cringe.  My last test was high 2.5.  I should be under 2.0.  Today I went on my get the number under control strategy. I drink an egg white protein drink with cranberry aloe and fiber.  I eat a very low phosphorus oatmeal protein bar.  And then another serving of either one for dinner.  I take binders too.  I take eight pills of calcitrol for my calcium problem.  My calcium numbers are in range, but they were low for weeks after my thyroid surgery. 

I hope to have my numbers in range by Wednesday.  We'll see.

2.5-4.8 is the ideal range used by most nephrologists for those of us on dialysis (here's Davita goal for patients - https://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/phosphorus-and-pth-goals/e/8021).  Why does your neph suggest under 2.0?  How long is your dialysis treatment time?  If running less than 4.5 hours increasing your time well help as well.  Phosphorus is harder to clear.   
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I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
3.0 calcium/2.0 potassium bath
cassandra
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« Reply #9 on: May 14, 2016, 10:20:04 AM »

In my hosp (UK) Phos is measured in mmol/liter, Davita measured in pg/mL. I'm confused, so in UK limits for Phos on D are 1,2-1,6. Davita limits 3-5,5.


     :banghead;

I looked at conversion tables and they really give me a headache

      :angel;
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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 #10 on: August 01, 2016, 02:23:03 PM »

Good news, my phosphorus numbers are in range, 1.2  (1.9 is the high side of our range).  Thanks to egg white protein, applesauce, and  mixed fruit.  Zero phosphorus meal with 24 grams of protein. 
lI use victory protein bars with 2% phosphorus, oatmeal.  I'm eating oatmeal with binders which seems to help digestion and constipation.   I'm taking $500 pills once a day for Hep C.  I'm on the third week of a 12 week program.
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OneForTheBirds
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« Reply #11 on: August 01, 2016, 07:29:20 PM »

Whammo, how did you prepare your egg whites and how much do you eat?
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