Welcome to the “How to Smile and Live with PKD” blog!

Looking for the most recent posts?  Click on the blog link.

For a few years now I have encouraged Shannon to create a blog to share his story.  Share how his PKD has impacted, inspired and changed his life forever.  Over the past year I have been quietly blogging on my own as an outlet for someone quietly living as the partner to someone with PKD.  There are many symptoms that cannot be found in a textbook or by reading symptoms on WebMD and Dr. Google.  Things that have taken place that I never would have expected when he was first diagnosed.

We are both very private people when it comes to our personal lives.  There are many things even our closest friends and family members might be shocked by.  It is my hope by sharing our inner thoughts, feelings, and experiences it will help others that have PKD or might be taking care of someone with PKD.

It has been a time of discovery and growth.  A time when we realize how precious the little things in life are.  As time has progressed it has been a roller coaster of emotion for our relationship, our friends, our family, and our professional world.  A roller coaster that I would never wish upon my worst enemy.

We will be posting regularly to share previous posts from our private blog as well as more recent items as well.  Stay tuned!

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What?  You are blogging?  Seriously?  Don’t you have a hot rod shop and a million other things going on?  Well yes, but it is time to finally share our story.  How about we start with some basic questions?

What is polycystic kidney disease?

Polycystic kidney disease (also called PKD) causes numerous cysts to grow in the kidneys. These cysts are filled with fluid. If too many cysts grow or if they get too big, the kidneys can become damaged. PKD cysts can slowly replace much of the kidneys, reducing kidney function and leading to kidney failure.

How common is PKD?

In the United States about 600,000 people have PKD. It is the fourth leading cause of kidney failure. It is found in all races and occurs equally in men and women. It causes about 5% of all kidney failure.

What other organs besides the kidney are affected by PKD?

PKD can affect other organs besides the kidney. People with PKD may have cysts in their liver, pancreas, spleen, ovaries, and large bowel. Cysts in these organs usually do not cause serious problems, but can in some people. PKD can also affect the brain or heart. If PKD affects the brain, it can cause an aneurysm. An aneurysm is a bulging blood vessel that can burst, resulting in a stroke or even death. If PKD affects the heart, the valves can become floppy, resulting in a heart murmur in some patients.

How is PKD treated?

At present, there is no cure for PKD. However, a lot of research is being done. Recent studies suggest that drinking plain water throughout the day and avoiding caffeine in beverages can slow the growth of cysts. Research is also helping us understand the genetic basis of PKD.

Studies also suggest that some treatments may slow the rate of kidney disease in PKD, but further research is needed before these treatments can be used in patients. In the meantime, many supportive treatments can be done to control symptoms, help slow the growth of cysts, and help prevent or slow down the loss of kidney function in people with PKD.

More questions?


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This is a contact page with some basic contact information and a contact form.