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Hope

Well. At least I can say that I tried.

I thought the meds (Jynarque) would buy me time but I was wrong. Following the review of my labwork with the nephologist (eGFR is now 21 - it's been trending down since December), she's lining up consults with a dialysis nurse as well as a surgeon for fistula palacment. And, more importantly, she told me to put out the word that I need a kidney donor.

I sure didn't see that one coming.

Crap! I guess the dream of an artificial kidney may not come true for me.

Through tears, I wrote a post to my Facebook friends.

And then a crazy thing happened. They responded. With tears. With encouragement. With love. And also, with offers to be my live donor. (insert ugly cry here)

I'm still in shock. I'm so humbled. I'm so grateful. The generosity still amazes me.

I don't know if anyone will be a match and/or healthy enough to donate. But the gift they've given me RIGHT NOW is just as important. It's the gift of hope.
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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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Words to live by

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 (...
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It's getting real...

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What a night!

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