Adjusting to a Life With Poly-Cystic Kidney Disease (PKD)

lonely, alone, lonlinessFrom what I understand there are many people out there suffering with PKD (poly-cystic kidney disease) but it’s a (mostly) invisible disease.  When I pass them on the sidewalk or shop next to them in the grocery store, they look like anyone else.  Many people don’t even know they have PKD.  I lived like that for over 50 years.  Yet, I’d had it always.

PKD is hereditary.  I had never even heard of the disease until I went to the hospital with appendicitis.  While scanning my belly, the doctor saw “lots of cysts” on my kidneys.  It was in the hospital emergency room that PKD was mentioned.

As I recovered from my appendectomy, I had a lot to think about.  Not only was I moving into a new house in little over a month, I had that kidney cyst information on my mind.  I put my health questions to the back burner and concentrated on the move.

Which Relative Had Passed PKD On To Me?

country roadAfter I was fairly well settled in my new place, I decided to try and find out which relative had passed PKD on to me.   I asked my few living relatives if they had known of anyone in the family who’d had poly-cystic kidney disease.  The answer was always no.  I was left to guess, and my best guess was that is was my mother.  She had already passed away from Alzheimer’s.  I’d always felt like I’d inherited every bad gene imaginable from her.  She had the classic large waistline, and was inactive.  Kidney disease can sap your energy and in the case of PKD, those cysts enlarge the kidneys to an uncomfortable size.

Both of her parents had big round bellies, but so did my paternal grandparents.  In fact, my father’s mother was always rubbing her back, like it ached.  Pain in the “flank” area is one sign of the disease.  In the end, my search for the culprit revealed no answers.

I felt very alone with this disease, and I was angry.  I was just getting back on my feet after a very tumultuous period in my life, only to find that now I had an incurable disease to deal with.  Well, it’s always something, isn’t it? Life sucks and then you die, that sort of thing?  That was my attitude.

I Needed to Feel Better

rose and vaseThe next step was to find our more, and some relief from the awful way I felt.  I’d begun to get headaches, whereas I usually never had headaches.  The numerous cysts made me constantly feel full and heavy.  Now I realized why my waistline kept expanding and I couldn’t lose weight, no matter how hard I tried.  I was carrying around a bunch of water balloons inside me.

My family doctor seemed only concerned about my blood pressure, which was slightly high.  She put me on BP medicine, which I absolutely hated taking.  I’m not much on taking medicine anyway, and the thought of being on pills for the rest of my life was disheartening.  I will admit that the medicine made the headaches go away, which was nice.

After I moped around all depressed and unhappy for a while, I began to wonder if I really had to accept my diagnosis and the hopelessness of no cure.  After all,  I am fearfully and wonderfully made!  My body has never been much of a friend to me, but it could certainly contain some hidden abilities that I don’t know about!  It was time to find a way to tap into those abilities, because I really, really needed help.  I was starting to feel really lousy, and I was only in my 50’s.

Finding a Homeopathic Doctor

An online friend mentioned homeopathy.   If conventional medicine simply gave me pills (what else is new), I needed an alternative.

Even though my new, homeopathic doctor admitted that she did not know much about PKD, she helped guide me toward better overall health.   I learned about lowering inflammation, which is the basic cause for all disease, through eating well.   She introduced me to Juice Plus, which gives me access to additional nutrition, in pill form, that includes nutrients from a huge variety of fruits and vegetables.

I visited her regularly until I moved away from the area, but her advice has stuck with me, and I still follow it.

The One Good Thing

tomatoes and basilOnce we get a health scare, or wakeup call, we tend to pay attention and make necessary changes.  Until then, we tend to believe we are just fine.

This was absolutely true in my case.  Having this disease has caused me to change the way I look at eating.

Now, I eat more fruits and vegetables than ever.  I drink fruit smoothies, I eat salads, I create homemade soup filled with organic produce.  Most importantly, I am very much aware of what goes into my mouth.  It has to be food that is not only beneficial to my overall body, but kidney friendly as well.

Those of us with CKD (Chronic Kidney Disease – something that is easier to find info about than my PKD, but means the same thing – bad kidney function), must be more vigilant about our diets. Some supposedly “healthy” foods, should be avoided. For instance, did you know that eating starfruit can be harmful if you have kidney disease?

Take Control, There is Always Hope

empty benchThese days I no longer feel so alone with my disease.  It still seems that the only people familiar with PKD are the sufferers. We know first hand how uncomfortable and hopeless it is to be diagnosed.

Take heart.  I was diagnosed in 2011.  Took BP medication for about a year, then went off – with my doctor’s approval – and have not taken any medication since.

Since my PKD diagnosis, I began eating better, to lower inflammation.  I seldom ever add salt to anything.  I exercise – walk, dance, treadmill – regularly and that does help me feel better!  I began taking Juice Plus in 2014 and still take that supplement regularly.  I never have headaches.  I’ve never had a UTI, which is common with this disease.  In short, I am doing okay without medication.  I can only assume that my lifestyle changes / eating habits have contributed to all this good news.

My advice to everyone, kidney disease diagnosis, or not, is to take care of your kidneys.  An unpleasant surprise may be waiting down the road.

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