PKD Sufferers Left in The Dark

sleeping catWith the exception of the PKD foundation website, there is little information to be found about poly-cystic kidney disease.  It’s one of the reasons I began writing this blog.  Don’t get me wrong, the PKD site has lots of useful information, but when it comes to stories of people who have the disease, and treatments they may have tried, there is precious little to find.  Even my homeopathic doctor is mostly unfamiliar with the disease. She has no experience with curing it, but maybe I will be the first. She gives me hope.

I mention treatments, but you may be wondering why if you have PKD, or know someone who does.  That is because there is no cure, and therefore really no treatments.  But I had hoped that not all of those diagnosed would quietly accept their fate without trying to change it.  I am not accepting mine, and I won’t stop looking for a way to reduce and destroy the cysts that are overtaking my kidneys.

In general the advice is to control blood pressure by taking pills. And for the most part the only things I can find to do about PKD is “walk for the cure” or read stories about people who have had kidney transplants.

But I have learned, on my own, that losing weight and staying in good shape helps me feel better overall.  Often I will feel best after taking a long walk.  Being sedentary seems to make me feel stiff and gives me back pain.  Because of the enlarged size of the kidneys, which sometimes includes the liver, our PKD bodies can be a bit deformed, with large mid-sections.  We look fat even if we are very healthy eaters!  That is totally unfair for sure.

I was in the dark about kidney disease all of my life, and never imagined that I could have inherited it. No one in my family seems to know any one of my relatives who had kidney problems. So why should I have even considered it? But here it is, messing up my life. I am on a quest to overcome this supposedly incurable disease.

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