A Diagosis of Kidney Disease, Now What?

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.

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.

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.

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.

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.

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.