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Sugarlump
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10 years on and off dialysis

« on: May 18, 2013, 07:39:32 AM »

Despite keeping to a fairly low potassium diet, I am struggling to get my potassium level down to an acceptable level. (7.3 this week pre dialysis, 3.9 post)
I eat a fairly normal english diet.
I usually have a cooked breakfast/light salad or sandwich lunch/cooked dinner. I try to limit my fluid to 1litre a day.
I don't eat fruit and only have 100-200 mls of apple juice a day.
I only have 1 cup of coffee a day.
I only eat crisps or chocolate during dialysis.
I usually have 2-3 portions of salad or lower potassium veggies a day.
I presoak my potatoes.

So what am I doing wrong? and what can I do to fix it? Dietician/nurses not much help. Tell me I must be eating high potassium food. But I can't figure
out what...
Help???  :urcrazy;
Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
PatDowns
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« Reply #1 on: May 18, 2013, 09:10:07 AM »

Despite keeping to a fairly low potassium diet, I am struggling to get my potassium level down to an acceptable level. (7.3 this week pre dialysis, 3.9 post)
I eat a fairly normal english diet.
I usually have a cooked breakfast/light salad or sandwich lunch/cooked dinner. I try to limit my fluid to 1litre a day.
I don't eat fruit and only have 100-200 mls of apple juice a day.
I only have 1 cup of coffee a day.
I only eat crisps or chocolate during dialysis.
I usually have 2-3 portions of salad or lower potassium veggies a day.
I presoak my potatoes.

So what am I doing wrong? and what can I do to fix it? Dietician/nurses not much help. Tell me I must be eating high potassium food. But I can't figure
out what...
Help???  :urcrazy;

If you are getting a post dialysis reading of 3.9, then maybe you need to up your treatment time.  Also, see if you are running on a 2.0 potassium dialysate bath as opposed to a 3.0.  While you are doing the right thing by presoaking potatoes, how often are you eating them?
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Frank Moiger aka (previously) NoahVale and now PatDowns, the name originally chosen by a good dialysis mate who died in 12/2013.  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
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« Reply #2 on: May 18, 2013, 09:16:17 AM »

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« Last Edit: October 20, 2013, 09:02:42 PM by Henry P Snicklesnorter » Logged
Sugarlump
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« Reply #3 on: May 18, 2013, 09:27:58 AM »

Despite keeping to a fairly low potassium diet, I am struggling to get my potassium level down to an acceptable level. (7.3 this week pre dialysis, 3.9 post)
I eat a fairly normal english diet.
I usually have a cooked breakfast/light salad or sandwich lunch/cooked dinner. I try to limit my fluid to 1litre a day.
I don't eat fruit and only have 100-200 mls of apple juice a day.
I only have 1 cup of coffee a day.
I only eat crisps or chocolate during dialysis.
I usually have 2-3 portions of salad or lower potassium veggies a day.
I presoak my potatoes.

So what am I doing wrong? and what can I do to fix it? Dietician/nurses not much help. Tell me I must be eating high potassium food. But I can't figure
out what...
Help???  :urcrazy;

If you are getting a post dialysis reading of 3.9, then maybe you need to up your treatment time.  Also, see if you are running on a 2.0 potassium dialysate bath as opposed to a 3.0.  While you are doing the right thing by presoaking potatoes, how often are you eating them?
Hi Pat.
They have changed my dialysate to a 1.0 potassium from a 2.0. I do 3 and a half hours x 3. I hate dialysis  >:(
As for potatoes, probably 4-5 times a week but I am not overkeen on rice, and don't like pasta so find it difficult to replace them... I wish I could find a decent menu plan/recipe book for dialysis patients.
All our dietician gives us is a leaflet telling us what to avoid...
Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
Sugarlump
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« Reply #4 on: May 18, 2013, 09:40:54 AM »

G'day Sugarlump,


Your dietician/nurses are almost certainly right.



I can see one culprit immediately - crisps. Salted potato crisps are very high in potassium, (unsalted not quite as bad,) 1oz containing 450 to 500mg, -  about 4 times as much as a small bar of plain chocolate and about the same as eating a banana. A small chocolate bar is not so bad if eaten in moderation. Chocolate bars containing nuts can be significantly higher.


Secondly, eating these during dialysis would only help you if our bodies immediately digested and processed the food so that the potassium you just consumed was in the bloodstream and dialysis could remove it all at the same time, or at least during the four hour session.


Doesn't work that way, unfortunately.  :(


Quantities are also terribly important. 1 standard measuring cup of home cooked mashed potatoes can yield 900mg of potassium. That's a lot for a small quantity. While pre-soaking thin slices of potato and disposing of the water, then boiling and again disposing of the water does help, it Reduces, rather eliminates potassium.


By comparison, 1 large banana, which most renal diet charts tell us are to be avoided, has about 450mg potassium.


You need to get some really good advice, hopefully from your dietician, on the specifics of identifying potassium/phosphate etc, etc in your foods to be able to plan appropriate meals for renal failure.


It's very important to be aware that quantity can be  just as significant as the analysis. Someone else posted a while back, (Restorer?,) that we all need to become industrial chemists to cope with the renal diet.


If you don't have any success, let me know and I'll dig up the sources for the lists I use.


Henry p

hello Henry.I have been looking on the internet for an easy to use list of potassium values in food (actual amount rather than low, medium, high) as i realise there is a lot of variation between these groups and in portion sizes.
BUt but but I was under the impression (FROM THE NURSES!!!) That it was alright to eat higher potassium foods whilst on dialysis, e.g. crisps, bananas and orange juice but from what you say this isn't true???
I probably only eat 3 packets of crisps a week max and maybe 1-3 chocolate bars. I always get very hungry on dialysis (and bored) so tend to need to eat a fair bit of portable food hence crisps/chocolate etc.
I obviously need to reduce my potato intake.

Tonight I am cooking chicken tikka (left out the tomato paste) white boiled rice and cucumber raita.

Think I need to rethink my entire diet and what I eat during dialysis.
And maybe buy a set of scales (for portion size)...  :(
Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
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« Reply #5 on: May 18, 2013, 09:47:07 AM »

A 1K is good unless you happen to get the flu where you are not eating.  Then it will take too much Potassium off which is dangerous.  Too low of potassium is just as bad as too much potassium.  My unit won't use 1K at all.  At a different unit I was on 1K and did well just asking for 2K if I was not eating for some reason.  It is a delicate balanced dance.

Have your soaked potatoes maybe once a month the day of dialysis.  Soaked potatoes is not a license to eat as much and as often as you like.

Hope this helps....   :pray;
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« Reply #6 on: May 18, 2013, 10:43:13 AM »

G'day Sugarlump,


Your dietician/nurses are almost certainly right.



I can see one culprit immediately - crisps. Salted potato crisps are very high in potassium, (unsalted not quite as bad,) 1oz containing 450 to 500mg, -  about 4 times as much as a small bar of plain chocolate and about the same as eating a banana. A small chocolate bar is not so bad if eaten in moderation. Chocolate bars containing nuts can be significantly higher.


Secondly, eating these during dialysis would only help you if our bodies immediately digested and processed the food so that the potassium you just consumed was in the bloodstream and dialysis could remove it all at the same time, or at least during the four hour session.


Doesn't work that way, unfortunately.  :(


Quantities are also terribly important. 1 standard measuring cup of home cooked mashed potatoes can yield 900mg of potassium. That's a lot for a small quantity. While pre-soaking thin slices of potato and disposing of the water, then boiling and again disposing of the water does help, it Reduces, rather eliminates potassium.


By comparison, 1 large banana, which most renal diet charts tell us are to be avoided, has about 450mg potassium.


You need to get some really good advice, hopefully from your dietician, on the specifics of identifying potassium/phosphate etc, etc in your foods to be able to plan appropriate meals for renal failure.


It's very important to be aware that quantity can be  just as significant as the analysis. Someone else posted a while back, (Restorer?,) that we all need to become industrial chemists to cope with the renal diet.


If you don't have any success, let me know and I'll dig up the sources for the lists I use.


Henry p

hello Henry.I have been looking on the internet for an easy to use list of potassium values in food (actual amount rather than low, medium, high) as i realise there is a lot of variation between these groups and in portion sizes.
BUt but but I was under the impression (FROM THE NURSES!!!) That it was alright to eat higher potassium foods whilst on dialysis, e.g. crisps, bananas and orange juice but from what you say this isn't true???
I probably only eat 3 packets of crisps a week max and maybe 1-3 chocolate bars. I always get very hungry on dialysis (and bored) so tend to need to eat a fair bit of portable food hence crisps/chocolate etc.
I obviously need to reduce my potato intake.

Tonight I am cooking chicken tikka (left out the tomato paste) white boiled rice and cucumber raita.

Think I need to rethink my entire diet and what I eat during dialysis.
And maybe buy a set of scales (for portion size)...  :(

No, you should eat them BEFORE Dialysis. (Rather the hours before) It should be your meal before Dialysis if at all. That way it has had time to register in your bloodstream and it can be dialyzed out.
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August 16th, 1996 - Born in Sacramento, CA; Born with Posterior Urethral Valves
September 2008 - Large Reconstruction, bladder augmented, stoma placed and ureters fixed
September 2010 - Needed emergency hip surgery for Slipped Capital Femoral Epithysis
September 2010 - Started Dialysis without refusal (Big mistake)
Summer/Fall 2011 - "Inactivated" on the Inactive Transplant List
October 2012 - Activated on the transplant list
November 30th, 2012 - Surgeons threatening to not to a transplant based on weight
April 25th, 2013 - Lost 25 pounds (97kg), however developed highly resistant bladder bacteria, Inactivated from list until eradicated
May 15th, 2013 - Finally cleared of the bacteria, reactivating on list imminent.
May 24th, 2013 - Reactivated on the list!
June 8th, 2013 - Transplant!
June 19th, 2013 - Dialysis Catheter officially removed and returned home from the hospital!
June 21st, 2016 - Sleeve Gastrectomy
March 11th, 2019 - Revision to Gastric Bypass
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« Reply #7 on: May 18, 2013, 10:55:36 AM »

I wish I could find a decent menu plan/recipe book for dialysis patients.
All our dietician gives us is a leaflet telling us what to avoid...
Have you never been given Lawrence Keogh's "Rediscovering Food & Flavours" kidney care cookbook?!  I say cookbook, but it's not got a huge amount of recipes in it (only 16)!  Blokey was given it by the team at dialysis at A.  As I say, it doesn't have a lot in it and I was going to offer to send it to you but I just Googled and you can also download (or order) it from the Kidney Research UK website ...

http://www.kidneyresearchuk.org/health/free-recipe-book.php

It may give you some ideas anyway. 

 ;D
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« Reply #8 on: May 18, 2013, 10:59:39 AM »

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« Last Edit: October 20, 2013, 09:01:33 PM by Henry P Snicklesnorter » Logged
Zach
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« Reply #9 on: May 18, 2013, 11:40:46 AM »

Hi Sugarlump,

Here are some links for recipes.
Hope you find these helpful.

PS:  There's always my chili recipe!
http://ihatedialysis.com/forum/index.php?topic=11916.0

 8)

http://www.kidney.ca/Page.aspx?pid=859

http://www.ultracare-dialysis.com/RecipeCenter.aspx

http://www.renalinfo.com/us/resources/recipes/index.html

http://www.davita.com/recipes/

http://www.aakp.org/education/brochures/item/aakp-nutrition-counter-a-reference-for-the-kidney-patient.html?category_id=27

http://ihatedialysis.com/forum/index.php?board=32.0
« Last Edit: May 18, 2013, 11:43:38 AM by Zach » Logged

Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
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« Reply #10 on: May 18, 2013, 05:02:50 PM »

I'm sure you already thought of this but thought I should ask anyway..

You have checked to make sure none of the medications you are on raise your potassium?
The only blood pressure medications that work for Ed raise his potassium.
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After a hard fight to not start I started dialysis 9/13
started on PD
hoping for home hemo starting to build a fistula 1/14
cause PKD diagnosed age 14

Wife to Ed (who started dialysis 1/12 and got his kidney 10/13)
Mother to Gehlan 18, Alison 16, Jonathan 12, and Evalynn 7. All still at home.
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« Reply #11 on: May 18, 2013, 05:05:33 PM »

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« Reply #12 on: May 19, 2013, 08:10:49 AM »

Also, watch your dairy products.  They are high in potassium and phosphorus.

     :P
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Sugarlump
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« Reply #13 on: May 20, 2013, 01:10:03 AM »

G'day Sugarlump, - I found the link to the PDF's on the USDA site. It seems they've updated the layout since I was last in there, - big improvement.


http://www.ars.usda.gov/Services/docs.htm?docid=22769


also there's this:


http://www.ars.usda.gov/SP2UserFiles/Place/12354500/Data/retn/retn06.pdf





Its a file showing the effect of various types of cooking on vitamin and mineral composition of a range of foods.


There's a fascinating range of different ways of accessing nutrition information, - most of the choices are on this page:




http://www.nutrition.gov/whats-food/food-composition-finders[/u




Hope this helps,


Henry P

Thanks Henry. I spent yesterday afternoon creating my own typed up list of foods I eat from these lists, appropriate portion sizes and their potassium content.
Now i have the actual potassium values, rather than a rough guide (divided into high. medium, low) it is a lot easy to calculate how much potassium
I am actually eating... It's a bit of an eye opener really, I had always avoided strawberries (assuming them to be high) whilst continuing to eat my
soaked potatoes but they aren't actually that high. And why is avocado so high too!!!!
Read some scary stories on high potassium (that it can be fatal) so being really good now. Onwards and upwards...
I think my biggest problem was, starting dialysis again last year, for  the third time (after two failed transplants) I was really ambivalent about wanting to go
back on dialysis (especially knowing my chance of a third transplant is tiny) and not having good vascular access (femoral groin line only) that I haven't really
committed myself to being back on dialysis. The disappointmant of losing the last transplanted kidney battle still hangs heavy in my heart. I had the taste of freedom,
only to have it snatched back with little hope to look foward to.
Feelings of Is this as good as it gets... and Why me?
It get's harder each time around...  :rant;
Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
Sugarlump
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« Reply #14 on: May 20, 2013, 01:49:03 AM »

I'm sure you already thought of this but thought I should ask anyway..

You have checked to make sure none of the medications you are on raise your potassium?
The only blood pressure medications that work for Ed raise his potassium.

Hi Sydnee
I did wonder about this as they changed my bp medication about 5-6 weeks ago and this is roughly the timescale i have had problems with my potassium.
I am now on Bisoprolol (as well as Lercanidipine and Doxazosin).
The Doc says no although it does mention as a rare side effect!!!
Maybe i am a raity!
Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
Zach
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« Reply #15 on: May 20, 2013, 03:43:02 AM »

Hi Sugarlump,

Hope you are well.
Here is another site that has some renal friendly recipes:

http://www.rsnhope.org/recipes/

All the best!
8)
Logged

Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
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« Reply #16 on: May 20, 2013, 03:56:41 AM »

.
« Last Edit: October 20, 2013, 08:55:23 PM by Henry P Snicklesnorter » Logged
Sugarlump
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« Reply #17 on: May 20, 2013, 10:17:08 AM »

Hi Sugarlump,

Hope you are well.
Here is another site that has some renal friendly recipes:

http://www.rsnhope.org/recipes/

All the best!
8)

Thanks Zac (like the sound of The Shrimp Scampi - will have to try that)  ;)

PS> I just read your tag 31 YEARS on dialysis HELL I don't know how you've managed that. I am now in my 8th year and finding it hard going.
       You have my respect :)
« Last Edit: May 20, 2013, 10:22:15 AM by Sugarlump » Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
Sugarlump
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10 years on and off dialysis

« Reply #18 on: May 20, 2013, 10:25:14 AM »

G'day Sugarlump,  It can be really surprising just what is in some foods. Hopefully your blood results will see your potassium levels back in line again.


It must be emotionally hard starting dialysis yet again for the third time. ESRD can give us such a roller-coaster ride.
it's good to see you getting on and doing something positive.


Henry P

Dialysis and blood tests again today.
Results tomorrow.
Going food shopping tomorrow - that could be tricky!!!
I promise to take my lists and this morning we bought digital scales for weighing portions, so I can check sizes...
Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
Sugarlump
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Posts: 2160


10 years on and off dialysis

« Reply #19 on: May 21, 2013, 08:51:07 AM »

Hey blood tests results for yesterday
6.5 Potassium pre-dialysis.
Whilst this is still high, an improvement on 8!!!
So it's going in the right direction but I need to carry on being very diligent with my diet
Grateful for all the links to recipes/website info
Tonight (from the Davita site) we are having meatloaf and gravy!  :beer1;
Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
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« Reply #20 on: May 21, 2013, 03:30:39 PM »

A good substitute for mashed potatoes is: mashed cauliflower! Make it like you would your potatoes. Not bad for a bit of a change!   ;D
Also, watch if you put cheese on your sandwiches. That can raise it also.
Good luck to you!
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HE created marriage and children.
Think about it! LOL!
Sugarlump
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« Reply #21 on: May 22, 2013, 12:47:16 AM »

A good substitute for mashed potatoes is: mashed cauliflower! Make it like you would your potatoes. Not bad for a bit of a change!   ;D
Also, watch if you put cheese on your sandwiches. That can raise it also.
Good luck to you!

Not too sure about the mashed cauliflower!!!
But The Meat Loaf last night was wonderful  :2thumbsup;
I thought cheese was relatively low in potassium just high in phospate?
God I love cheese....
Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
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« Reply #22 on: May 22, 2013, 11:42:43 AM »

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« Last Edit: October 20, 2013, 08:46:54 PM by Henry P Snicklesnorter » Logged
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« Reply #23 on: May 22, 2013, 02:57:23 PM »

A kilo of Colby! That!s good news. Giving up cheese has been one of my personal dread factors.
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Henry P Snicklesnorter
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« Reply #24 on: May 22, 2013, 03:27:16 PM »

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« Last Edit: October 20, 2013, 08:45:52 PM by Henry P Snicklesnorter » Logged
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