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Daily aches... a new normal

Years ago during long car rides I would feel a dull crampy ache right along my waist on the left side. I would stretch in my seat, thinking that I'd been immobile for too long. Sometimes the ache would go away, other times it would seem to persist. Luckily it wasn't painful. It was actually... just annoying.

At that point in my life, I knew that I had Polycystic Kidney Disease - I would eventually find out that pretty much everyone on my mother's side of the family tree had it as well - but I never really connected that sporadic driving discomfort with the disease.

1 + 1 = 2

I finally put it together.

That infrequent achy feeling is now a persistent resident in my life. I wake up with it. I sit with it. I walk with it. I drive with it. I still try to stretch it away but I know it's futile.

This, my friends, is PKD flank pain.

Sources say that this chronic ache/pain can be caused by:

  • the outer lining of the kidney being stretched (i.e. cysts are growing)
  • an enlarged kidney pressing on surrounding organs/tissues (i.e. it's outgrowing its space)
  • changes in posture due to large kidney (slouching while driving?)
  • other (things no one understands yet)


I consider myself fortunate. I have yet to experience the sharp pangs of pain that are so often associated with the disease. And up to this point, it's more of a discomfort than anything else. So I'm not even treating it with Tylenol (the only drug I/we can use).

Regardless, chronic pain and discomfort can affect your quality of life. It can cause anxiety, depression, insomnia, financial strain due to lost work and stress on family and other relationships. So in addition to managing the pain, it's also necessary to manage its effect on your life.

Take care of you.

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And so it begins

At my last appointment, the nephrologist actually offered to give me a referral for transplant. And then a week later I got THIS in the mail from my insurance company. Crap! It's getting real now. If something like that doesn't take the wind out of your sails, I don't know what will. Granted I had let my doctor know a couple of months ago that I wanted to be screened and ready to go as soon as my eGFR hit 20. Did I think it would be this year? No. My estimates were three years from now. Yet the combination of the four point eGFR drop + the transplant referral leads me to believe that my DOCTOR believes I should hit 20 within the year. I don't think I'm going to be able to last until the artificial kidney comes out. :-(

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I never knew - couldn't even fathom - how tough it is to live with a chronic disease. Sure I've been hypothyroid for YEARS but it never really felt serious. I take a little pill once a day. There are no side effects. I get my energy back. Good and good. Polycystic Kidney Disease is nothing like that. There is no cure - save transplant. But even then you take anti-rejection drugs for life. If you forget your meds, you risk transplant rejection. How's that for adding a little anxiety to your anxiety? There is a single drug that SLOWS DOWN the disease's progression, but that promise of dialysis and/or transplant is always right over the horizon. The side effects of that drug are constant thirst and the knowledge of every public rest room within a hundred miles. And while you wait for the disease to progress, you get to experience soul draining fatigue, anxiety, physical discomfort as your kidneys expand to fill your abdominal cavity, the look of a pregnant belly (...

What a night!

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Teach us to fish

I've recently started trying to educate myself on current research and insights around PKD and all the diseases that seem to show up along with it.  While it's exciting to learn that we're on the verge of significant innovation in how CKD and PKD are diagnosed and treated, I find myself a bit disappointed. Instead of shouting the news from the roof tops... instead of spreading the excitement, the medical community hides the punchline. They share their findings in dry journal articles, steeped in language that is hard to understand. I realize the audience for the articles is not Joe or Jane Public. I realize that they're scholarly discussions of research methodology, statistics, inference and conclusion. I also realize that this is potentially a single data point that may, or may not, contradict current beliefs. Regardless, wouldn't it be nice if these studies included a simply worded summary of the work? Something easily consumable by the general pu...

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