My Story by Lady Elaine

[ElaineKeith]

Hi I am lady Elaine. I have stage 3B bilateral renal carcinoma. I had my left kidney removed. And I have had a RFA done on my right kidney. My goal is trying to keep off of dialysis but trying to find a diet is so so hard. I hope somebody out there can help me.

[Hidden]

Hi, A kidney-friendly diet is an easy part to answer. Try going to davita.com and check their Recipe link. They have a lot of kidney-friendly meals to get you started. Each recipe list the total of potassium, phosphorous, protein, calcium and sodium in each meal. You don't want to eliminate any of those things but you need to minimize the amount you take in.

I'm going to assume at this point that you already have a nephrologist. If so, ask for a referral to a Renal Dietitian. Bring your lab values with you to the appointment and let them help you develop a meal plan that will help you stay healthier for the long-term without doing further harm to your remaining kidney.

Also, not knowing where you live, but if in the USA that same website will help you find a free 90-minute Kidney Smart class that will give you lots of information on what to do to save your remaining kidney and slow down the progression of CKD.

I'd also recommend you speak to your doctor about developing an exercise routine that will allow you to maintain a healthy lifestyle.

This is a great site to meet lots of folks who are dealing with similar health issues and it's a good place to vent and learn more about CKD.

Take care.

[ElaineKeith in reply to Hidden]

Thank you for your reply. I have been to DaVita. but it is hard for me to find a diet because of my G6PD. Because I cannot eat any beans few vegetables and low protein is very hard so right now my diet consists of Chicken. Which I am also allergic to Seafood iexercising with my autonomic dysfunction I cannot be up no more than 15 or 20 minutes before I pass out. I am not a person that gives up I'm willing to try anything and everything that I can to not go on dialysis so thank you very much for answering my question

[Zazzel in reply to ElaineKeith]

Hi Lady Elaine,

I feel for you. I have multiple food intolerances some of which include lemon, carrot and ginger, soy, gluten just to name a few of the worst. Doesn't seem so bad until you realize that the majority of vegan and vegetarian and " health food" has one or more of these ingredients. Then combing that with kidney free diet makes it a challenge. All of the other food intolerances I have I can eat a little, but have to rotate so as not to eAt too many in a row. The way I managed it at the beginning was to make a big chart in excel of the things I could and couldn't eat by food category ( veggies, fruit, meat etc). I cook the majority of my meals and eat out rarely. Eating out is a challenge for all CKD patients I'm sure.

I reviewed a list of foods you can't eat on a site about G6pD. It looks challenging. It sounds complex. It really sounds like you will need to find a dietician to work with to cover all the bases. You might also try to find a Facebook group with G6pD and or possibly a combo of that and CKD. Specialized groups on Facebook can be very helpful.

As for excercise, have you tried something low impact like yoga where it is more about stretching and breathing? It will not only help the inflamation caused from autoimmune disease, but will help with anxiety associated with trying to figure this all out.

If you'd like to private message me with all the foods you can't eat, I will look it over and see if I can offer any help, but would strongly suggest you run by any suggestions with a certified kidney dietician and or your nephrologist. Good luck.

[ElaineKeith in reply to Zazzel]

Zazzel I would be very grateful for your help. I don't do Facebook l have email. The dietician here are up to date with people on dialysis. Not to much for me. Thanks for caring.

[Zazzel in reply to ElaineKeith]

I just sent you a private message here on this site. Look at the top of your screen and click on the bell. It will tell you I sent you a message. Then click on that and it should take you to the message.

[lowraind]

Hello, besides the davita site, everytime I am planning a meal, I put the name of what I want to prepare along with the terms ckd, kidney friendly or renal friendly, which usually provides me with several recipes as well as the names of different sites to go to, which I copy and paste onto a list of Kidney friendly food sites which I am collecting.