A Polycystic Kidney Disease Story: Even Though I Don't Have It

"Polycystic kidney disease (PKD) is an inherited disorder in which clusters of cysts develop primarily within your kidneys.  Cysts are noncancerous round sacs containing water-like fluid.  The cysts vary in size and, as they accumulate more fluid, they can grow very large.

Although kidneys usually are the most severely affected organs, polycystic kidney disease can cause cysts to develop in your liver and elsewhere in your body.  The disease causes a variety of serious complications.

A common complication of polycystic kidney disease is high blood pressure.  Kidney failure is another common problem for people with polycystic kidney disease.

Polycystic kidney disease varies greatly in its severity, and some complications are preventable. 

Lifestyle changes and medical treatments may help reduce damage to your kidneys from complications, such as high blood pressure." (Mayo Clinic)
My husband inherited polycystic kidney disease. 

His family calls it the "Cadillac disease."  You can live a "normal" life for quite a while.  But, carriers of this disease often have many health issues and/or die earlier than average.  From what the family has told me and what I have observed, they often die of something else, but I believe it is related to PKD.  

My mother-in-law had PKD.  Her body often didn't take well to surgeries and I believe it had to do with her PKD.  Recently, life was significantly altered by complications due to a surgery and then she chose to stop dialysis, which means she chose to die rather than live a severely limited life of pain.  

My husband’s maternal grandfather and aunt also died earlier than others and they had PKD. 

Now in his 40s, my husband’s PKD is still relatively minor, though he has had some health issues throughout his young life; issues with his gall bladder; high blood pressure; hernias; he has mysterious stomach issues; a job doing manual labor would kill him!  

I also believe a lot of the jobs he has had where he was treated like a robot that could be up all hours of the day were literally killing him too. 

He already has many cysts on his kidneys.  I can feel them from the outside.  It hurts him if I accidentally push hard on one.  Unless some new form of treatment is invented in the next 20 years, he will likely have to be on dialysis at some point in his life.  

If his mother’s choice is any indication, dialysis is a painful way to live.

The best thing I can do now is educate myself and prepare for the future, which I need to more of.

Diet is a key factor in keeping this disease at bay.  In my mother-in-law's case, she said a low sodium diet was crucial.  
My husband has a much better diet than he had as a young adult, but it could be better.  He still eats out a lot, which means he is getting a LOT of sodium. 

Since my children are at high risk of having this disease too, I should be better with their diets (and my own for that matter).

I think our next house should be one where the main floor has all a person needs so that in the event that he becomes weak he doesn't have to climb stairs. 
We need to have health insurance... ALWAYS! We cannot let it lapse. 

I have my foot back into the workforce door, after being a stay-at-home-mom for ten years, and will likely take over as our main source of income at some point.  His income is substantially larger than mine will ever be, so our way of life would be altered at that point.

We are working on our estate planning right now.  This should have been done a long time ago, but, I am glad we are actively working on it now.  

It’s a good thing for all of us who are married and/or who have children to do, not just those with a known disease.  But, it is a motivating factor.

The future is always in the back of our minds.  Planning, actively preparing for the future and doing our best to be healthy is the way we “deal” with PKD now.  

Today's guest poster wishes to remain anonymous. 

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