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

Correction - mistake in notification re latest eGFR - read to me as 20 but written lab report says 17. I'm still happy with it but in the interest of accuracy wanted to let you know.

@kamama94 As a fellow CKD patient, I also keep a close eyeball on specific numbers. Keep on keeping on!
Ginger

Have had multiple problems accessing this discussion since the upgrade! I may or may not be able to get back here tomorrow. Doing well medically for now. Wishing peace and blessings for all.

Hi @kamama94, I'm glad you found your way back to the discussion. I'm confident that you'll find your way back here again now that the site is up and running again.

I'm glad you are doing well medically at the moment. And it's spring. I hope the sun is shining in your corner of the world as it is in mine today. I'm off for a walk.

@transplant2017, I hope that you doing well.

This morning, I read your posts from March, and I realized that I, too, had the dialysis set-up that you had, but mine was before my intended liver transplant when my liver failure affected my kidney and I suffered acute kidney failure. I had an emergency dialysis line in my neck and then they put a port in my upper chest. I was on inpatient and then out patient dialysis before a simultaneous liver/kidney transplant. One thing that I did learn through the experience was that I became more accepting of the process of dialysis as my mind adjusted to the schedule.
I am not on dialysis since transplant in 2009, however I want to let you know that I am thinking about you.

When did you have your liver transplant? Has there been any change in your kidney function? What are the doctors saying about a transplant?

* To Anyone looking for how to navigate and How to Get to Know the New Improvements on Mayo Clinic Connect -
https://connect.mayoclinic.org/blog/about-connect/
Let me know if you need further help.

Good news - this weeks labs show slow but continued decrease in BUN and creatinine and eGFR remains @ 17.

@kamama94 Whoo-hoo!! Good for you!
Ginger

@sueby, am attaching recipe collections here. Please note, this is not advice, just personal recipes based on what I have learned from various resources. I strongly encourage you to work with a GOOD renal dietitian.

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.

I also want to take a moment to thank a friend who made a lovely lap cover for me to use during dialysis. Even though I don't need further dialysis right now, I sleep with that wonderful quilt-let every night. It is a huge source of calming comfort and I am so grateful to the friend who made it for me. 🙂