A Diagosis of Kidney Disease, Now What?

by dustytoes

Polycystic Kidney Disease (PKD) is a sneaky disease that many people may have and don't know it because it's inherited, and it gradually gets worse as we age.

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 my middle age years and beyond.

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

What Is Polycystic Kidney Disease?

I am in my mid-fifties and am just becoming aware PKD exists.

Polycystic Kidney Disease, or PKD, affects the kidneys when cycsts of liquid form and grow in those organs.  It is an inherited disease passed on through either a dominant or recessive gene. The cysts are fluid-filled sacs and can grow in size and number all your life.  (There is a worse kind than what I have which affects babies and young children.)

Until later in life, when you may have pain or go to the hospital for another reason, this disease will not be apparent.  If your parents know they have PKD, then you may also have inherited this illness.

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.

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


There Is No Cure - So They Say

This really makes me mad.

angry madBesides 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 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.


My blog about my fight against PKD

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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 am not feeling lucky.)

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 - thank God.
  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.
  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, they 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.

So What Now?

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

pills drugs medicineI really don't know what to expect now that I know I have these numerous cysts on my kidneys.  My doctor has put me on a daily dose of Lisinopril for lowering my moderately high blood pressure.  After I went on the pills, my headaches disappeared.  I was depressed at the thought of being on daily medication, but I began to feel much better, so I don't mind.

Most worrisome for me is the increased chance of aneurisms and ultimately the possibility of kidney failure, although that is not a sure thing.   At least now that I know I have PKD I can concentrate on being more healthy, and follow the progress made on finding a cure.

I also plan to see a homeopath.  The medical community basically says, oh well, we will help you with the side-effect and symptoms and you can eat better for kidney health, but nothing will stop the disease and it's progression.  I refuse to accept that.  Until I have explored all options, or run out of money trying, I am going to fight this stupid thing.

Foods to Eat and Foods to Avoid With PKD or CKD

Cronic kidney disease sufferers have some of the same issues.

When researching kidney disease, it is sometimes called CKD (chronic kidney disease).  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.  I guess I may need a dietician, but in the meantime I've discovered that potassium can be a problem, and eating foods lower in potassium can be helpful to the kidneys. (Check with your own doctor for advice, but everyone should find out how to eat more kidney friendly.)

One of the foods on the "high potassium" list, that I love, is potatoes.  Watch the video below to find out how to remove some of the potassium from the potatoes so you may still enjoy them mashed.

You may also want to read this page about how The Right Diet Can Slow PKD.

How to Make Mashed Potatoes for Kidney Health

Potatoes are high in potassium which can be a problem for someone with kidney disease.

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.



Where to go online to learn more about Polycystic Kidney Disease

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: 12/03/2015, dustytoes
Thank you! Would you like to post a comment now?

Please say hello, and especially if you have PKD.

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.

Guest on 03/01/2014

Dustytoes, There's always something, isn't there? It's quite disappointing to treat the body well and then to find out that something completely unexpected is happening anyway.
While medical practices of AMA (and other government-sanctioned medicine worldwide) offer astonishing treatments, there are other options which can improve health, such as acupressure, energy medicine, etc. Relaxation-based techniques also are healing and refreshing, as are the silent prayers of contemplation/meditation.
These words you wrote are compelling:
"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."
Best wishes for foiling PKD and for connecting with a homeopath. It sounds as though you are on a good path.

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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