A Diagosis of Kidney Disease, Now What?

It 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

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 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.

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.

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.