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.

Friday, September 13, 2013


"Heigh-Ho, Heigh-Ho,
It's off to Mayo I go"

It's official. I'm going to the Mayo Clinic (Rochester, Minn.) the week of September 23.

I've only been to Minnesota once. It was March of 1991, and I was a 22-year-old senior in college. My basketball team had advanced to the Sweet Sixteen round of the NCAA Division III Tournament. I was young. Excited. Hopeful. And I felt invincible.

Now I'm a bit older and not feeling so fearless or invincible anymore. But I do remain hopeful and optimistic about what I will learn, and I am very excited to get to meet Dr. Leung in person. Mayo is ranked #1 in nephrology, and Dr. Leung is an expert in both nephrology and hematology and works with amyloidosis patients. 

I think this will be a good trip for me.

Bring it on, Minnesota.

Tuesday, September 3, 2013

Curiouser and Curiouser

My echocardiogram and fat pad biopsy came back negative. (Rumor has it they found some deep dish pizza, a peanut butter shake and some onion rings in the fat pad, but that cannot be confirmed.)

UM is now consulting with Dr. Nelson Leung, a Mayo Clinic doctor who has a dual appointment in hematology and nephrology and seems to be the guy who can figure this out for me. Maybe he can help me navigate out of this rabbit hole.