Living With Polycystic Kidney Disease

by KDB

My trials and successes, joys and sorrows, and lessons learned throughout the progression and frustrations of my disease.

I am only one family member in a long line of them plagued with this genetic and hereditary disease. I certainly don't have all the answers and am frequently depressed and frustrated because of it but I'm hoping that I can share and inspire others like me to FIGHT every day to LIVE, be healthier and NEVER GIVE UP on themselves!
I'm NOT a Dr. or any other kind of health professional but I CAN speak to the experiences I have been through and the things that HELP me and I hope they will be helpful to others as well.

My Diet:

Kidney Portion

NO salt

1/2 cup dairy a day

white breads

7 oz protein per day

choose low phosphorous foods more frequently

LIGHT cheese and choose havarti or mozzarella more often than cheddar

Trying to STAY Hydrated

What if you don't like WATER?

I have a HARD, hard time with this.

Since I was a young child I had many bladder infections throughout my life and as a result I trained myself NOT to drink water. (Don't drink, won't have to use bathroom and it won't HURT!)

Ever since I've known that I have had PKD I have had a problem with drinking more. It probably is the biggest issue I have right now because being dehydrated is the WORST thing for hard working kidneys and I'm sure I'm not helping them especially when I go back to bad habits and go whole days without drinking anything at all! It's a challenge to change YEARS of bad habits but I work at it DAILY!

I KNOW that I must drink more water (also keeping mindful that I do not create issues by becoming TOO full of fluid) but I really don't like it.

The standard belief is that 8 glasses of water a day is the best.

I'm lucky to get 5 glasses a day and sometimes even less than that!

Here are SOME of the things I do to stay hydrated:

  • warm mug of water with a wedge of lemon
  • I can also add a wedge of lemon to a cup of green tea which is also good ;)
  • decaffeinated herbal teas
  • eat fruit such as watermelon and grapes
  • when I make a cup of tea I make a DOUBLE tea in a BIG cup
  • I set an hourly alarm on my phone (maybe I often ignore it but if I get ONE more glass a day than I did before I BELIEVE it is doing its job!)
  • many of my herbal teas will also work as iced teas so for summer I hope to make more of them
  • because I need more fruit every day to help combat gout issues as well I make fruit smoothies (I get tired of eating the same fruits so I change it up by making a smoothie and then it covers my need for fruit as well as my need for fluid!)


  • 1/2 - 1 cup of juice or water or use ice cubes
  • 1/2 - 1 cup of fruit (I use 1/2 frozen tropical fruit salad and 1/2 frozen berry mix) but any combination of fruit that you like is good and fresh is BETTER
  • sometimes I may put in a cup of protein powder if I haven't had enough protein yet in a day (I use Beneprotein) 
  • blend till smooth and drink ;)

I use a cup of all and it makes 2 big smoothies (I give one to my son and the other to myself!)

It's an easy and tasty way to get some extra fluid and also the fruit servings you need for the day.

I find that with this disease and all my issues ( I also have type 2 diabetes and gout) I always do MUCH better with fresh fruit and veggies regularly.

It's always going to be a trial and error process based on whatever you are allowed and also what you LIKE to find recipes and plans that help you feel better and receive the essential nutrients and fluids your body needs to work better.

I hope my tips will be helpful for you because they ARE helpful and working for me!

Kidney Disease


  • clean blood and remove excess fluid as urine
  • keep minerals in balance
  • help control blood pressure
  • produce vitamin D to keep bones healthy

Damaged kidneys allow harmful wastes and fluids to build up in your body.


Protein is needed to maintain and repair muscle in your body and to help fight infections.

Albumin measures nutrition status in your blood.

A healthy albumen is over 33g/L.

Protein should come from high quality sources such as:

  • meats (beef and pork)
  • fish
  • poultry (turkey and chicken)
  • eggs
  • dairy products


Sodium helps balance fluids in your body. Too much can cause your body to retain fluid and raise blood pressure.

High blood pressure will damage the small blood vessels in the filters of your kidney, causing them to fail.

Following a lower salt diet is VERY IMPORTANT!

Sodium food sources include:

  • table salt; sea salt
  • canned foods (soup)
  • convenience meals (frozen entrees, instant noodle, rice side dishes)
  • processed foods (lunch meat, hot dogs, processed cheese)
  • snack foods (pretzels, crackers, chips)
  • condiments (soy sauce, ketchup, pickles, olives)
  • food choices at fast food restaurants

NOTE: kidney patients should AVOID salt substitutes (they contain potassium) such as "No Salt" or "Half Salt". These can be VERY dangerous!


Potassium is a mineral important for muscles and nerves to work correctly. When kidney function decreases potassium can build up and be hard to keep in balance.

High potassium can cause irregular heartbeats and can be dangerous for your health!

Potassium is found in many fruits, vegetables, meats and dairy products.


Phosphorous is a mineral that works with calcium and Vitamin D to maintain bone health.

Phosphorous is found in almost all foods.

As kidney function decreases , it can be important to decrease phosphorous in your diet because high levels of it will not be removed by the kidney.

Learning which foods are HIGH phosphorous will help you either decrease portions or remove that from your diet all together.


Kidneys play a role in maintaining fluid balance in the body.

When kidney function decreases it can become difficult to balance.

Signs of too much fluid may include:

  • high blood pressure
  • swelling in legs, hands and face
  • shortness of breath
  • weight gain from fluid on the body

Some people need to limit fluid and other do not.

Fluids are all liquids: (milk, juice, tea/coffee, soup, foods that liquify at room temp (popsicles, gelatin, and ice cream)



Trials and Tribulations

of dealing with Polycystic Kidney Disease

I have known since I was 23 that I had this disease and I guess there are MANY things I could have been doing between then and now to improve my situation but that's neither here nor there because it's done and past and can't be changed.

All I can do NOW is do my best to follow the instructions of my health care professionals and WORK every day at improving the situation as best I can.

PKD and Diabetes AND gout are ALL progressive diseases that will get worse as I go along but hopefully by implementing the tools and ideas given me I can maintain the place where I am NOW for a long time.

I admit I don't do the BEST job of keeping my phosphorous, potassium or sodium LOW. 

I TRY. I really DO try.

The thing about health is that it includes so many different parts that it is really difficult to keep a handle on all of them.

I DO get depressed and frustrated and then revert to BAD habits.

Sometimes I give up and behave badly.

Lately though my body has decided to dictate to me that I MUST not give up and I MUST get my stuff in order and take proper care of ME.

Every bad thing I do causes pain.

My body is SCREAMING to me...BAD PATH, REROUTE!!

So I MUST eat healthier and keep hydrated DAILY or I will suffer gout pain most of all but also stomachaches, headaches, fatigue, and various other ailments.

It is very HARD to give up many of the things you LOVE to eat and drink. Especially when they are NOT really very good for you. For years I LOVED food and loved to cook and to eat and then diabetes hit and I have had so many issues since then trying to get myself healthy and in line with the program that I've come to HATE food, cooking and eating so I want the EASIEST and FASTEST thing possible.

NOW, I'm working on it. I don't have either love or passion for it but I know that I HAVE to take care of me so I do the work. I study, I learn, I try new recipes, I hate some and love others and most of all I HOPE that the work will HELP and LEAD me somewhere BETTER.


Polycystic Kidney Disease
Polycystic kidney disease is a cystic genetic disorder of the kidneys. There are two types of PKD: autosomal dominant polycystic kidney disease and the less-common autosomal recessive polycystic kidney disease. It occurs in humans and so...


My Pages

The Fight of My Life
Blog where I try to journal and keep track of whatever I am doing to keep positive and continue fighting for health.

Sucks to Be ME
Blog that allows me to rant and vent my misery when I hit a low. I also have things posted here like fave music and ideas for eulogies and such. What can I say, occasionally I am morbid!

Crunchings and Munchings
Website detailing recipes, diet ideas and other helps for my menus, foods and diet restrictions.

Updated: 06/06/2012, KDB
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KDB on 10/11/2012

:) Thanks!

dustytoes on 09/20/2012

Healthy eating habits are learned over time. I thought that giving up salt, or cutting way down was going to be very hard, but instead I have found lots of new herbs to use and bring out the flavor in my food. Now I don't miss the salt, but I am not perfect and do eat a salty chip here and there! Don't be miserable trying to be perfect. Pat yourself on the back when you something great, like drinking those healthy smoothies -and then look for the next great thing you can do for yourself!

KDB on 07/06/2012

Yes, I'm trying hard to get more active and prolong the health of mine. Thanks for reading! :)

dialysis fistula on 06/27/2012

Kidney is the source of life. We must take good care of them. Sports, diet, good habit can protect our kidney, I think.

KDB on 06/04/2012

Thanks :) Yes it does help quite a lot so I keep at it even though it gets hard sometimes! I hope sharing encourages others for sure because we all need support and encouragement!! ;)

katiem2 on 06/04/2012

Wow, that's some experience, thanks for sharing as I'm sure this will be helpful and supportive to many. I do hope your feeling well these days, taking care of your health as you do must help greatly.

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