It is likely that the diet you found online is for people who are in end stage kidney failure. In ESRD and on dialysis it is important to keep potassium and phosphoros low but there is absolutely no reason to do that unless you have extremely low function (less than 10% or perhaps not even til lower).

There are a lot of conflicting ideas about what people with PKD should eat. Some folks swear by a low protein diet but my nephrologist said that studies have not shown that it is effective in halting kidney failure.

The body needs protein, and some good sources are from things like beans, eggs, fish and lean meats.

It is good that you are drinking water. Eating a balanced healthy diet, drinking plenty of water, getting lots of exercise and plenty of sleep, not smoking or doing recreational drugs or drinking alcohol to excess...all of these things that are good for the general population are also good for PKD patients.

You are right to watch the soduim. It has a huge impact on blood pressure which in turn has an impact on kidney function. It is probably the thing I had the hardest time with (cause I love things that are spicy, zesty and salty!).

It's great that you are thinking about these things now. For years I ate a good diet and exercised and tried to the right thing for my health. Well, I ended up in kidney failure and having both of my kidnyes removed. But you know what? My recovery, prognosis and ability to be ready for transplant were all impacted by my good habits. They didn't prevent kidney failure but they meant that the rest of my body was strong and healthy and is healing quickly after a major operation. I was deemed a great candidate for transplant (which i hope to have this month) and I am looking forward to a great future with my new kidney.

There are so many reason to start the healthy habits now and kidney function is only one of them. Good luck!

Hi Kendie,

I was also just diagnosed this year and was going thru this after my diagnosis wondering what to and not to eat. My neph told me the number 1 thing to avoid is Caffeine and salt they both interupt kidney function. He says everything else you can have in moderation.

Hope this helps and Good Luck

Nicki

Lindsey's advice is good. PKD does not cause kidneys to overwork by processing protein. in fact more people in advanced kidney disease are deficient in protein, resulting in muscle wasting. that does not mean sausage, egg and cheese biscuit for breakfast, big mac for lunch and a huge steak for dinner, it means a moderate amount of protein. your body will do much better than if you restrict protein.
cutting back on sodium and drinking plenty of water will benefit you. keeping your sugar and fat consumption low benefits just about everyone.
I am very skeptical about the PKD diet after reading a testimonial from someone who said it made her transition to dialysis much easier. compared to what? how can a person know that? besides, if it didn't prevent the need for dialysis then why drastically change your diet?
a healthy diet, plenty of fruits and veggies, moderate protein, low in sodium, fat and sugar, lots of exercise, no bad things like smoking, drinking in excess and recreational drugs, avoiding aspirin and other over the counter drugs (Tylenol is approved for kidneys because it is processed by the liver), will help you a lot more than any fad diet.
btw, welcome to a great support group.

Kendie,
It sounds like you came across the pkdiet site. If so, please ignore the vast majority of the recommendations beyond drinking 2-3 liters of water. The dietary recommendations are NOT endorsed by any PKD specialists or nutritionists despite the site owner's liberal name dropping of bonafide researchers names (all of whom will tell you they are appalled by the recommendations and are NOT associated with the site and do not support it in whole or in part; I've talked with a number of them personally). The recommendations are simply one individual's somewhat unusual views on diet based on her personal views, some mixed reading, some published non-peer reviewed studies in mice which have never translated to success in humans. Many of the recommendations are downright dangerous, especially for a kidney patient (much of her focus is on patients with massive liver cysts...she claims her diet helped with her massive liver cyst presentation and conveniently doesn't mention in most places that SURGERY is what reduced the massive volume of her liver).

Lettuce, tomatoes and green peppers (in fact all peppers depending on your desire for heat) are just fine for your kidneys and your body, as are eggplants and potatoes (preferably baked, not fried). You don't need to be using pink Himalayan salt tinctures (high in sodium) or special herbs or any type of food combining to be eating a healthy kidney diet. The only food you actually should avoid is star fruit and special herbal remedies. Use caution with some herbal teas (avoid licorice as it can increase your BP and use caution with some "remedy herbs" as well), but herbs for cooking are fine and will help you reduce your desire for salt with your food.

Lindsay (Alinds) and Helen's (spiderwoman) advice are good. Try to keep your sodium intake below 1500 mg/day (you don't need to aim much lower, you do need some sodium in your diet). DO drink water, 2-3 liters per day. Caffeine increases the activity of cyclic AMP, the energy in cells, which contributes to the increase of cyst production in the kidneys.

Focus on whole foods, whole grains, vegetables, fruits, protein (legumes, beans, meat, fish...some neprhologists and renal dieticians recommend 0.6 - 0.8 g of protein per kilogram of body weight depending on your kidney function). This is something to talk with your doctor about and don't hesitate to ask for a consultation to a renal dietician (emphasis on renal dietician, one who is specially trained in diets for kidney patients based on your labs; they'll help you develop a diet that meets your dietary needs and includes the food you like).

Hope this helps!
Best wishes,
Ruth

PS I have an NIH renal nutrition presenation that was given to my PKD chapter that I can email to you. Send me a message within daily strength with your personal email address and I will email the presentation to you. It describes all the nutrients, their role in our diet, and the recommended levels of intake for kidney patients at all levels of function. It's a good baseline for you to use to talk with your doctor or develop a basic diet for yourself. The key on protein is not to go too low or your body will start to break down your muscles, including your heart, to get enough protein, and that's not a problem you want!

Lots of great advice. If you read about 3-12 different PKD diets you will begin to notice how much they disagree with each other and contradict one another.

None of the diets are Proven. and as already stated above the extreme diets are when your kidneys have basically complete failed, which may never happen.

In my opinion if you eat what makes you happy and it does not cause you problems that is the best diet to be on. The more meals you make from scratch the healthier they will be and you will have more control on what is in your food such as sodium. Most foods and drinks, candies etc...have plenty and many time too much sodium even without a salt shaker at the table.

If you do use salt for cooking Sea salt is my preferred salt since it has a lot of natural minerals and electrolytes unlike many salts that have nothing but iodine & sodium.

Learn what foods make you happy, give you energy, helps you maintain a good weight, and can be feed to the entire family.

learn what foods give you mood swings, cause kidney or cyst pain, give you nausea or a head ache. Avoid these foods and don't use them in your meals.

Drink what you like but make sure you drink about 4-6 bottles of CLEAN water a day. This helps you hydrate your kidneys and also keeps you from drinking too much bad stuff that is not good for you.

After drinking tap water vs bottled water I personally have found I feel about 25% better with bottled water after a 4 year test on myself. I refuse to drink tap water now unless I have no other option. If you have a good well or spring that has been tested safe then you have no worries but tap water provided from our lovely cities has all kinds of toxins in it.

Truly we could all talk for hours about these topics. The main thing is to stay calm, avoid stress, drink tons of clean water and eat what makes you feel goof, mentally, and physically. If you notice something makes you feel worse or makes you gain extra weight get rid of that and replace it with something else. Over time you will develop a diet that works for you even though its always being adjusted a little here and a little there.

Best wishes to you,

Eltasche