What's your experience with dialysis? Give & get support here

Posted by Rosemary, Volunteer Mentor @rosemarya, Mar 7, 2019

Dialysis is required if your kidneys don't function adequately on their own. Your doctor will discuss with you the type of dialysis that's best for you. Dialysis treatment is a serious responsibility, You'll need to work closely with your health care team who have experience in managing dialysis. Open communication with your health care team is essential to your overall health.

Fellow patients are a wonderful source of support and practical information because of a shared dialysis experience.
If you are a dialysis patient, or loved one of a patient, what are some things that you have experienced that might be helpful to someone who is new to dialysis? What kind of life adjustments have you had to make? How has it affected your everyday life?

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

@kamama94

To everyone, I've lost my links to various pages and have been unable to find them again using Connect's new format so if anyone can share my post elsewhere, please do so.

Renal patients are told to avoid chocolate. I have no intention of arguing with the experts or of telling people to ignore expert advice. However, I AM willing to share some information and my personal experience.

Do NOT use any of my recipes without checking with your care team or a renal dietitian or your physician(s) and so forth.

Here's some info about chocolate: According to the USDA and/or Hershey's, 1 tablespoon of 100% pure cacao (aka cocoa) powder contains 10 cal 25 mg P
97 mg K 0 mg Na <1 Gm prtn. It also has approx 8 mg caffeine.

I have permission from my nephrologist to use cacao (without dairy, of course,) in small amounts. I make chocolate sauce (to use SPARINGLY) with almond milk or coconut milk and maple sugar and recently have been experimenting with ingredients to make a chocolate shell for ice cream and other frozen treats.

Here are shell results so far: I combined 1/4 C coconut oil (melted) + 1/4 C 100% pure cacao powder + 1/4 C maple syrup. The result was a bit grainy because I was impatient and didn't mix the ingredients well enough before sampling and I suspect I didn't melt the coconut oil enough. The mixture set up and hardened on its own without being added to something cold; I believe this was due to the fact that I keep my pure maple syrup refrigerated and it was too cold to maintain the shell mixture in a softened state until applied to a cold ingredient.

But it was delicious!

I'm still experimenting with it and probably will concoct a couple of different versions before I come up with something I'm satisfied with. I'll post any improvements or suggestions but I think the current version would be great on chilled strawberries, for instance, or other small pieces of fruit. I tried my initial batch on non-dairy lemon-flavored Italian ice and except for the fact that the shell actually hardened too much before I could apply it easily, it was delicious.

Here are the nutrition facts for home-made vegan chocolate shell:

Choc shell 12 T 774.4 cal 102.4 mg P 875.8 mg K 5.2 mg Na 4 Gm prtn

1 T 64.5 cal 8.5 mg P 73 mg K 0.4 mg Na 0.3 Gm prtn

¼ C cacao 40 cal 100 mg P 679 mg K 0 mg Na 4 Gm prtn

¼ C melted coconut oil 480 cal

2-4 T maple sugar or syrup 254.4 cal 2.4 mg P 196.8 mg K 5.2 mg Na 0 prtn

Again, do NOT consume this without checking with your care team first!

I am NOT telling any renal patient to take in chocolate, I merely am sharing my own decision to use small amounts with my own nephrologist's okay to do so.

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@kamama94 ,
I want to try to help you find the links that you have lost. I assure you that they are still here.
-If you are looking for the conversations in the Kidney and Bladder Group, you could find them by clicking on the (Blue) Kidney and Bladder at the top left of this page. You should be able to see all discussions.

The best way would be for you to Follow the groups that you are interested in. And then to set you choice of how you want to be notified.
Colleen is sharing the How To in the Blogs > About Connect: Who, What & Why > How to customize your notifications and settings. You will find it here:
https://connect.mayoclinic.org/blog/about-connect/

I will be here and I am ready to help you with this. Just let me know because we want you to be connected.
Rosemary

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@rosemarya

@kamama94 ,
I want to try to help you find the links that you have lost. I assure you that they are still here.
-If you are looking for the conversations in the Kidney and Bladder Group, you could find them by clicking on the (Blue) Kidney and Bladder at the top left of this page. You should be able to see all discussions.

The best way would be for you to Follow the groups that you are interested in. And then to set you choice of how you want to be notified.
Colleen is sharing the How To in the Blogs > About Connect: Who, What & Why > How to customize your notifications and settings. You will find it here:
https://connect.mayoclinic.org/blog/about-connect/

I will be here and I am ready to help you with this. Just let me know because we want you to be connected.
Rosemary

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@rosemarya, thanks. Will click on the Kidney & Bladder groups and see what happens. 🙂 Meanwhile, is there some way you can share the chocolate shell post with others? Have been having quite a bit of computer trouble lately.

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The Mad Chemist's tip of the week:
When making vegan gell-o using fruit juice and powdered seaweed (instead of gelatin derived from boiled-down bones and beaks,) do NOT use as much agar-agar per cup of fruit juice as most recipes call for. Otherwise you will need a hammer and chisel in order to eat your dessert.
Go ahead, ask me how I found that out

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@kamama94

The Mad Chemist's tip of the week:
When making vegan gell-o using fruit juice and powdered seaweed (instead of gelatin derived from boiled-down bones and beaks,) do NOT use as much agar-agar per cup of fruit juice as most recipes call for. Otherwise you will need a hammer and chisel in order to eat your dessert.
Go ahead, ask me how I found that out

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@kamama94 So, what did you do with the experiment? Can it be salvaged? Curious minds want to know!
Ginger

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@gingerw, LOL, I melted the concrete gel in the microwave (about 3 min, stirring often) then mixed another cup of peach juice into the liquified gel and let it set. Result was less firm with a bit more flavor but still looked like a petri dish. I had to laugh.

I also found out there's no need to whisk the agar-agar into cold juice and bring it all to a boil in a saucepan, lightly grease a container to pour it into, then fridge it. My re-constructed gel set up well without refrigeration.

Next version will be 1/2 tsp agar powder (not flakes or threads) mixed into 2 C lightly sweetened grape juice and left on countertop to set.

As a vegetarian-almost-vegan, I don't miss meat. As a renal patient I don't miss most of the "Avoid Thises or Thats." As a diabetic I don't miss most sweets.

But by gum -er, by gel - I do miss jell-o.

Stay tuned for further results. 😉

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@gingerw, Today I tried 1/8 tsp agar powder in 4 oz hot (microwaved) mandarin juice, left it on counter an hour then fridged but still has not gelled in 6 hrs. 🙁

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@kamama94

@gingerw, Today I tried 1/8 tsp agar powder in 4 oz hot (microwaved) mandarin juice, left it on counter an hour then fridged but still has not gelled in 6 hrs. 🙁

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@kamama94 Uh-oh! Is it something to do with the mandarin juice chemical makeup?
Ginger

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@gingerw

@kamama94 Uh-oh! Is it something to do with the mandarin juice chemical makeup?
Ginger

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@gingerw, I'm thinking it does. I know you can't make regular jell-o with pineapple very easily if at all.

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@kamama94

@gingerw, Today I tried 1/8 tsp agar powder in 4 oz hot (microwaved) mandarin juice, left it on counter an hour then fridged but still has not gelled in 6 hrs. 🙁

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@gingerw, Less Concrete, More Wiggle:
Ingredients:
1 Hy-Vee (registered trademark) Mandarin oranges (in juice) individual cup
1/4 tsp agar powder
Directions:
Drain juice into sm microwaveable dish
Heat 30-60 sec
Stir in agar until dissolved
Add Mandarin slices to agar-infused juice, stir well
Let cool on counter then refrigerate
JMHO:
Not overly sweet and not identical to jell-o but pleasant and light dessert on its own

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@kamama94

@gingerw, Less Concrete, More Wiggle:
Ingredients:
1 Hy-Vee (registered trademark) Mandarin oranges (in juice) individual cup
1/4 tsp agar powder
Directions:
Drain juice into sm microwaveable dish
Heat 30-60 sec
Stir in agar until dissolved
Add Mandarin slices to agar-infused juice, stir well
Let cool on counter then refrigerate
JMHO:
Not overly sweet and not identical to jell-o but pleasant and light dessert on its own

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@kamama94 I love that description! Those little individual cups are just right for a snack or desert.
Ginger

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