A Diagosis of Kidney Disease, Now What?

by dustytoes

Polycystic Kidney Disease (PKD) usually shows up later in life. Cysts form and grow in the kidneys and there is no cure.

Until I was in my mid-fifties I was lucky enough to believe that I was a healthy person. A diagnosis of kidney disease was the last thing I expected. I've always taken good care of myself and have never smoked. I've always been active and have never been much overweight. I believed that I was healthy and would stay that way as long as I continued to be good to my body. I looked forward to being in good shape heading into old age.

Then I got appendicitis, which led to a surprise discovery in the hospital emergency room. It was there that the doctor told me I had lots of cysts on my kidneys. He asked if I had ever heard of polycystic kidney disease and if anyone in my family had it. My polycystic kidney disease had been discovered.

What Is Polycystic Kidney Disease (PKD)

Polycystic Kidney Disease, or PKD, is simple to explain, as it affects the kidneys with unwanted cysts that form and grow.  This type of kidney disease is inherited, being passed on through either a dominant or recessive gene.  (There is a worse form of the disease which affects babies and young children.)

It is not simple to live with, as the multiplying number of cysts, and their eventual size, fills the body with much larger than normal kidneys.  As of today, the growth can not be stopped with any medicine.


Fist Size Kidneys Are Normal

PKD sufferers can have football size kidneys.
Normal Size Kidneys
Normal Size Kidneys

PKD, CKD - It's all Kidney Disease

Chronic Kidney Disease, CKD, encompasses all kidney problems, whether inherited or brought on by lifestyle and poor eating habits.  It is the gradual loss of kidney function which can end in kidney failure.

PKD, is a type of kidney disease I have.  There are other inherited diseases that affect the kidneys.  In the end, it's pretty much the same.  The kidneys lose effectiveness, and that affects our entire body.

How I Found Out I Had Kidney Disease

I got appendicitis.

In May, 2011, I made an emergency visit to the hospital one night after having stomach pains all day long.  The pain had become so bad that I knew I would not be getting any sleep and the on-call nurse said to get to the hospital to get checked out. 

While in the emergency room the doctor ordered a CT scan with dye to be sure it was my appendix - as they expected - and that scan showed a lot more than just an inflamed appendix.

The doctor said that my kidneys were loaded with cysts.  He then went on to say that they were common and were also probably inherited from my parents.  Did my parents or relatives have them?  "Not that I know of" was my answer.  I didn't care at that point, I just wanted my appendix  gone!  My father had not been a part of my life in years and my mother had died of Alzheimers.

I later checked with family members and none of them had ever known anyone in my family with PKD, but my mother died in 2008 and my guess is that she may have been the one who had it.  I seem to take after her as far as genes go, although I guess I'll never know for sure.

BUT here's the thing... unless you find out in some odd way, you may have this disease and never know it!  That expanding waistline may not simply be due to aging.

What Are The Symptoms of PKD?

Some people go for many years without any symptoms, or don't know why they have the problems they do.

symptoms blood pressureIt is a bit ironic that as I was just learning about the disease and it also happened to be PKD awareness week.  Getting the word out is important, like with all diseases, but unless you or someone you know has kidney disease, I doubt that you would pay much attention.  Well, this is a sneaky disease that you may have without knowing it.

When I reached my fifties, I began to have slightly high blood pressure, and I had developed occasional headaches, when I never used to have any. According to my doctor, controlling blood pressure is the most important thing to do.


Here's what the PKD website has to say about some of the possible symptoms.

  • high blood pressure
  • pain in side and/or back
  • headaches
  • frequent urinary tract infections
  • kidney stones
  • blood in the urine


Your Kidneys Want You To Eat More Vegetables
Your Kidneys Want You To Eat More Vegetables

More Than a Drink Recipe Book

If you have kidney disease, this book holds lots of good information.

One of the reasons I chose the "Smoothies for Kidney Health" book over the many others out there, is that is is written by a mother and daughter team who know about chronic kidney disease, CKD, first hand. 

In the months prior to the transplant, after Vicki's kidney disease had been diagnosed and she learned they would eventually fail, she drastically changed her diet.  She did this in hopes of keeping the inevitable at bay.  And it worked.  Not only did it take much longer for her kidneys to decline, but she felt good too.  Something that is not easy to achieve with kidney disease.

Buy the book, or read my review page (link below).


Smoothies for Kidney Health

Written by a mother and daughter team who know all about kidney disease.
Smoothies for Kidney Health: A Delicious Approach to the ...

Read My Review of the "Smoothies For Kidney Health" Book

I have poly-cystic kidney disease (PKD) and am very interested in keeping my kidneys working for as long as possible. This book is one of my favorites.

There Is No Cure - So They Say

We can help ourselves by eating right, but the cysts will continue to grow.

Besides discovering in my mid fifties that I have a disease that I was lucky enough to have inherited from one of my parents, I also found that there is no cure.  Those of us with PKD have to live with ever-growing cysts all over our kidneys that we can do nothing about.  And the cysts can grow in other areas too.

There is help for any pain associated with the growing cysts, and antibiotics for any urinary tract infections, along with medications for controlling high blood pressure. There are studies, clinical trials, and research into drugs that might one day rid us of the cysts, but as of yet, no cure.

The worst part is the fact that the numerous cysts may eventually cause the kidneys to fail.  They simply take over until the kidneys can't do their job of cleaning our blood.  Then it is time for either a transplant, or dialysis, or death.


The Good News and The Bad News

There is no good news!

Okay, I am kidding about there being no good news, but there isn't a lot. 

The (somewhat) Good:

  1. There is medication to control high blood pressure.  Because the kidneys produce a hormone which regulates blood pressure, they apparently can't do a good job of it once all those cysts are blocking their efforts.
  2. There is a great site - The PKD Foundation - which will answer many questions.
  3. Research is ongoing to find a cure.
  4. The Doctor can do urine and blood tests regularly to check up on kidney health.
  5. Doctors can do kidney transplants and hook me up to dialysis once my kidneys fail - if I live long enough for that to happen. (My doctor says that is a rare occurrence, but I've read that it's more like 50/50.)

The Bad:

  1. Now that I have it and I have had four kids, I had to tell them that I have the disease and they might have it too.  There is a 50% chance that it will be passed on if one parent has the disease.  The three older kids have been checked and they seem okay with no cysts present.
  2. The cysts will keep growing and there is nothing I can do to stop them.  My body has become my enemy.  And cysts can form on other organs also and may have already for all I know.
  3. Health Insurance - I don't have any.
  4. Facing the possibility of being on dialysis at some point down the road, or having a transplant.

AND, lets not forget The Ugly

As cysts increase in size and multiply they push against other organs and can distend the abdomen giving men the look of a "beer belly" and women the look of "being pregnant".  Instead of being the size of a fist, kidneys can grow to be the size of a football!  And they can each weigh as much as 30 pounds.

So I get to go through the rest of life looking fat, even though I try to eat well and exercise often.  Not to mention how heavy and bloated I feel - always.

Do you or someone you know have PKD?

I had never heard of this disease until I was 55 years old.
Watch What You Drink & Include Fresh Fruit Drinks
Watch What You Drink & Include Fresh Fruit Drinks

So What Now?

I do have options to try and there is always hope.

pills drugs medicineBecause high blood pressure is the greatest threat with this disease, my doctor had put me on a daily dose of Lisinopril.  After the initial upset stomach I got, the pills helped me feel better while lowering my BP, but I hated the thought of being on medication for the rest of my life.

So I decided to take this problem into my own hands.  I saw a Homeopath.

She did not know much about this disease - and that is the usual response - yes, even from doctors.

What she did tell me about was Juice Plus, which is fruits and vegetables in capsule form.  The only way I can combat the growing cysts is to eat as well as I can and keep my kidneys from having to struggle more than they need to.

So I eat well and have cut out many foods I know are bad for me.  I eat more fish, vegetables and fruit smoothies.  I take my Juice Plus daily, and don't overexert myself.  I also get regular exercise.

All these things have lowered my blood pressure to reasonable numbers without taking medication.


Eating Right With PKD

When researching kidney disease, PKD or CKD (chronic kidney disease), I've discovered that the   kidneys can fail, or be diseased, for many reasons.  My disease came about just because I was unlucky enough to have inherited bad genes.

My family doctor did not make a big deal out of my PKD diagnosis.  She said that kidney failure is very rare, but I've read that nearly half of all diagnosed people will end up needing dialysis or a kidney transplant.

In the mean time one thing we all have control over is how we eat.  Make changes for the better and in this day and age, we all know which foods are good and which are not.

Stick to fresh or frozen vegetables and fruits.  Make smoothies - they are wonderful, and the kidneys love them.  I have steered away from dairy, bread, sweets, red meat and carbs.  My changes have been gradual, and I do fall off the wagon occasionally, but I've found that eating right goes a long way toward making me feel better.


In The Meantime I'll Learn to Take Better Care of My Kidneys

Eating right and exercising can't hurt, but I don't honestly know how much it helps.

being alone

So these days, when I eat and drink, I always have my kidneys in mind. I've always been a big water-drinker and I continue to be today.  I'm trying to learn what types of food are helpful to my kidneys, but in my mind I don't really want to help out these traitors!  Yes, traitors to my body and lifestyle.  I mostly try to be healthy to help out the rest of my body so it will keep going in spite of my illness.

Knowing I am not alone in this is helpful, but I feel like all of us with PKD are just wandering around out there in the world without much hope.   We are like ticking time bombs and the longer we live the more likely our kidneys will give out on us.



Certain Foods Like Watermelon are Very Kidney Friendly
Certain Foods Like Watermelon are Very Kidney Friendly

Update on my Life With PKD

What I do to stay feeling good.

This page was written shortly after I found out I was living with an incurable disease.  Since then, I have done much to change my eating habits and way of life.  I want to share what has helped me most as far as feeling better.

#1.  Eat right... find out which foods create the fewest problems for kidneys.  For the most part, the more vegetables the better.  Grow your own if you can, or choose organic at the store.

#2.  Drink right ... Real cranberry juice (not the sugared kind) should be part of your diet.  Urinary tract infections are frequently a problem for us, and I've never had one.  I suspect it's because I have long included real cranberry juice in my diet.

#3.  Move around.  Take a walk.  Walk on a treadmill.  Ride a bike.  Dance to your favorite music.  I feel better when I have made the time to work up a sweat during the day.

#4.  Stay up on the PKD and CKD advancements.  I don't totally trust doctors, and especially when it comes to a disease they seem to know little about.   I don't always trust foundations who are looking to "find a cure" by it's readers raising money either.  But there is good information to be had on such sites.  At the very least, you will feel less alone in your diagnosis.  (This is my opinion only.  You make up your own mind.)

Now, I write a blog to keep myself informed and store my favorite recipes and links to helpful kidney health information.  If you have kidney disease, please check it out at the links below.

Where to go online to learn more about CKD and PKD

These are the sites where I got the information for this article.

PDK Foundation
Learn, connect, research, advocate and donate. All kinds of good info at this site.

National Kidney Foundation

Polycystic Kidney Disease
Info plus learn the difference between the dominant and recessive disease.

Updated: 08/31/2017, dustytoes
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dustytoes on 03/01/2014

Thank you very much for the well wishes Emma. I've begun seeing a homeopath and we are working together to fight this thing that is supposedly incurable.

TerriRexson on 10/20/2011

Sorry to hear about this. Sounds like you're getting yourself well-informed and doing the right things.

WordCustard on 06/23/2011

PKD sounds painful. But, as you say, at least knowing you have it may help you to manage it. I hope they do find a cure soon.

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