Thursday, January 6, 2011

Not kidney stones-- stone kidneys

 (hat tip to Robert for the title!)
Yet another bizarre, rare diagnosis to add to my health resume...

I went to the urologist today. This was the follow-up to the ER visit in late November with the kidney pain. Remember they did a CT and diagnosed kidney stones? So they also recommended that I do a test called "IVP" to see the kidney function or something. My family doctor told me to see a urologist for the referral for that test. So, that was like 7 weeks ago, and I just got to the urologist today.

He popped in the disk of my CT scan from that day and took a look. He quickly pronounced "you don't have kidney stones". I was quite pleased, obviously. But, of course, that begs the question... so why does my right kidney hurt? What *do* I have?

I have something more complicated than kidney stones. (I know you are all so surprised.)
I have a condition called "nephrocalsinosis medullary; bilateral". Got that?
It basically means that my kidney tissue (both kidneys) has calcified to a certain degree. The space inside the kidney is fine, not a stone in sight.

I don't know much about this condition yet, except that I get pain from it occasionally. Most of the information says that it is permanent damage, and could possibly have been caused by all the analgesics I have taken/continue to take, including the Voltaren (which I no longer take).

Robert read up on it today (I had no time), and he learned that with some mineral supplements, possible dietary supplements, and possibly a diuretic, this can be possibly reversed.

Next step is to get a kidney scan (not the IVP test), and find a good nephrologist. Because there just are not enough doctors in my life. Every pain seems to have it's own specialist, right?

I sent a fax already to Dr. D, asking him if the Lyrica is contraindicated with this condition, or if I should start taking it (again). Haven't gotten an answer yet, that may not be until Sunday.

All-n-all, I am not letting this get me down. No point. Another permanent situation stemming from having had NF, well, I'm not impressed. We say in Hebrew "katan alai" (ka-TAN a-LIE- 'lie' as in fib-), it means roughly "it's nothing compared to what *I've* been through".


  1. Sarah, you are unique - you get strength from what you have been through, and perhaps your role is to make us all say Hodu Lashem Ki Tov - G-d is good, and His plan is the right one for me, Thank you G-d.May you continue to have this strength, and even if sometimes there is darkness, I know you always remember that light follows it. Shabbat Shalom, Lots of love, and thank you for being you, Bracha

  2. Awwk! Oh, Sarah. You are a unique person, aren't you. :-) Well, at least you don't have to worry about special diets for kidney stones. That's a silver lining, I hope.

    I pray that you find a good doctor, who can help prevent further damage and hopefully reverse what's there.

    Hugs, Jackie

  3. I hope the damage can be reversed, and if not, that this is something that won't affect your quality of life too much.