What to eat?

[Newatdis]

Hello again. I was told by my doctor of the foods not to eat? It includes everything... I have high potassium,phosphorus,and my creatine is at 17. I go to dialysis 2times a week..my liquid is under control...can anyone give me tips on what to eat? And lower creatine

[Mgt8]

Yes, i know what you mean!

everything seems to contain phosphates......

I found this website useful....

mayoclinic.org/food-and-nut...

Also a chat with your nutritionist may be useful.. .....

Good luck......

Margaret

[Ilanasmum]

My daughter started with highs in potass phos and creatine. Just follow the docs advice on diet, theres lots of useful websites and kidney patient recipes. As for creatine hers was highest docs have ever seen (1687) and its still in the 900s but its not something you can change as much as the others or as harmful if your levels are too high

[cs65]

If you're on dialysis the treatments will temporarily lower your creatinine. They clean the blood just like your kidneys used to do. Your kidney dietitian can help you with lists of foods and their potassium, phosphorus and sodium levels. There are also cookbooks available for kidney patients - I would try the National Kidney Foundation and the Polycystic Kidney Disease Foundation websites for recipes and cookbooks. You will be better off eating low sodium, potassium and phosphorus foods like white bread, white rice, pasta with olive oil, garlic and vegetables instead of tomato or cream sauce. Try cranberry juice, egg and toast for breakfast, chicken, turkey and fish instead of high sodium meats. Also avoid fast foods and going out to eat too much - it is almost impossible to regulate your diet at restaurants and you are better off cooking your own meals. You can have gingerale and clear sodas instead of colas. There are plenty of fruits and vegetables with lower phosphorus and potassium and I enjoy canned fruit packed in juice. Just get used to checking the nutrition labels when you grocery shop as well as the lists of ingredients. You'll get the hang of it, I'm sure! Good luck!

[Newatdis in reply to cs65]

Thank you very much

[Garianne in reply to Newatdis]

DaVita is also a good place to check online. My niece told me about this one. Her dietitian at her dialysis center told her about it.

[StephenA in reply to cs65]

I have been on dialysis for 13 years (10 on PD; 3 on in-centre HD) and have a few comments to make:

I just hate all this "talk to your nutritionist/dietitian"! None seem to actually appreciate nutrition for dialysis patients. Every natural food has potassium & phosphates and choosing "low" foods usually results in poor nutrition especially in amino acids & soluble vitamins & enzymes. These nutrients are also removed by dialysis, so malnutrition is actually one of our biggest killers. The amount of amino acids removed is in the order of several grams or more per session - it is a major effect. Soaking higher potassium foods to remove potassium also takes out the other water soluble nutrients - not very clever.

Nobody has advised me on how to supplement, so I have done my own research: taking care not to knowingly add potassium or phosphates. My first step was to supplement with L-Carnitine (fortunately available in health shops) because I learned that it is made by healthy kidneys and is not one of the so-called essential aminos. Research confirmed that Carnitine can (meaning it may not work for everybody) improve the overall well being of HD patients. My well-being improved overnight. Now I also supplement with soy protein isolate and collagen to make sure I get a comprehensive amino acid/protein spread to make up losses due to HD. I also take a vitamin B complex tablet daily (the HD unit gives me a Vit B shot once a week when they remember) - to keep the B's up to strength.

Nutrition is not being properly addressed in HD treatments and correct/safe supplementation is probably essential.

Nutritionists & Dietitians - any comments??

One other comment: I seem to recover better if I exercise soon (within a few hours) after dialysis - the time I least want to exercise!! I am feeling stronger the next day and feel better. Anyone had this experience?

[Newatdis in reply to StephenA]

Thank for your info it is very welcomed.this is my first year in a in center hd.and I have gone through troubles.right now my av fistula has no thrill.the techs are telling me I need to get a new fistula before it dies completely. Any suggestions?

[cs65 in reply to Newatdis]

Did they say you need a new fistula created? I had mine completely blocked by clots last fall and my surgeon was able to unclog it during a fistula gram. It took longer than usual in the operating room, but I was so happy he could save it! Good luck to you!

[Newatdis in reply to cs65]

I hope I have the same luck as you

[StephenA in reply to Newatdis]

I had a graft put in and it is still functioning well 3 years on. Lucky me! I was not given any choices regarding Fistula/graft/buttonhole etc. May be your Heparin needs increasing to reduce clotting (but extends "drying-up time after HD). HD is quite a hassle and I often wish I could go back to PD - far less intrusive on daily life. I think that if PD is better managed (perhaps with some HD at various times) it could last longer. I am still researching supplementation as I firmly believe "natural" foods cannot help us enough nutritionally due to potassium/phosphate levels. Luckily my niece has studied food science and is helping. Remember malnutrition is our biggest problem, despite what the "experts" say.

I also checked potassium before and after dialysis and got a substantial decrease. I don't know where it comes from between sessions - I keep off high potassium stuff as much as I can. May be some of us take up potassium more readily than others (there are other patients at my unit that claim low potassium (K) and they eat all the High-K foods. Damned unfair!).

Good luck and hope all goes well.

[SPARKY1]

May I ask what your potassium levels are before and after dialysis?

[Newatdis in reply to SPARKY1]

I don't check them after dialysis..but last time i checked they were very high...