Tuesday, September 24, 2013

News from Rochester

Are you ready to learn about a new disease? I know you are!

Dr. Leung (pronounced "learn" btw) thinks I have something called Fibrillary Glomerulonephritis. It is a rare kidney disease characterized by fibril deposits in the kidneys. He does NOT think this is amyloidosis. So that's good! But fibrillary glomerulonephritis is no walk in the park, either. Again, it's rare - only 1 percent of kidney biopsies have this result. There is no cure and no proven treatment and most cases advance to renal failure within a few years. Dr. Leung is still working with the pathologist on one more thing - and he's suggesting that UM stain 2 of my prior biopsies for amyloid just to rule it out completely. But it's looking like i have fibrillary glomerulonephritis and will start treatment with a month of chemo (rituximab - a drug used to treat lymphoma). It's delivered via infusion.

I go to UM on Tuesday, Oct. 1 and will know more then.

Hard to believe that I'm feeling happy about needing chemo and the high chance that i'll need dialysis - but compared to the amyloidosis it sounds pretty good!! Ha. Life is funny.

Thanks everyone for your continued support and prayers. I still have a fight on my hands, but now I think I know the enemy.

12 comments:

  1. Thanks for sharing this, DG. I know it would be a polysyllabic, unpronounceable, ultra-rare sort of thing. That's the gift only you can bring. We'll all learn to pronounce it, though. And you're going to get through this. With flying glomeruli!
    Rhonda

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    1. This made me laugh, Rhonda. OF COURSE I would be difficult. :)

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  2. Awesome! Awesome? T-shirt production stopped until we can spell this darned thing. We still expect ass-kicking, but it is good not to be kicking it in the dark.

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    1. I'm so ready for ass kicking, Mike. Whatever this damn thing is! Thanks for the message!

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  3. Now that's a mouth-full but hopefully now you finally will have an answer and a plan for attack. Think of you often Darcy and keeping you in our prayers.
    Pat & Benny

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    1. Thanks Pat! I'm home most weekends and would love to catch up with you.

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  4. I'm glad this is good news but it still sounds scary. I wish I had something smart to say but I don't; I just miss you and will pray harder. I will also cook you dinner anytime. Just call me and say "I'm hungry!" xoxox

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    1. Miss you too! You can be my slapdash gourmet any day!

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  5. Does this mean you're not a medical marvel any more? Keep us posted! My car can drive to U-M now (and my feet can walk to see Alex) any time.

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    1. But I think we established that Jeff lives closer, so he should probably have Alex duty....

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  6. Thanks for your updates to keep all of us who love you "in the loop." Can't wait to catch up again soon and I know you'll keep plugging away to beat anything thrown your way.

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    1. There's a new study that shows that deep dish pizza cures all kidney issues....

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