Wednesday, Sept 1, 2010

Dear Ones --

We arrived at the Mayo Clinic here in Rochester, MN on Sunday, August 30. Watched a beautiful sunset as we approached the city.

On Monday, we saw Dr. Leung (pronounced "Learn") in Nephrology. He looks to be in his late 30's or early 40's and trained at Mayo. He agreed that the need for dialysis for 10 weeks now, the high sedimentation rate, the lack of response to high dose prednisone, and the progression to acute tubular necrosis were not characteristic of minimal change kidney disease.

Initially, he discussed 2 extremes of treatment. One was to add a second diuretic (water pill) called Zaroxlyn to the Lasix Craig is already taking. At the other extreme, he talked about giving Craig a drug that would essentially "kill" his kidneys so that the protein leakage would stop -- but then this would mean dialysis indefinitely and possibly kidney transplant.

Dr. Leung repeated a 24 hour urine collection which showed Craig making about 450 cc of urine in 24 hours (which is low, but this is in the setting of having dialysis three times a week) and still spilling about 8 grams of protein in 24 hours despite a much lower volume of urine (normal is less than 0.5 grams). Also sedimentation rate, which is a nonspecific measure of inflammation, still very high at 99 (normal less than 20). Albumin is increasing, which is great -- I believe it is up to 1.5. I would love to see it in the 2 to 3 range (normal is 3.4 to 4.6).

Monday afternoon, we met with Dr. Edson of Infectious Disease. He did medical school at U of Iowa and remembered Dr. Carney and Dr. Radcliffe who preceded us in dermatology at U of I. He was charming. While visiting with him, we learned from the CDC that the third Brucellosis test was negative. We discussed various exotic infectious diseases that Craig may have been exposed to in his travels, but Craig never really had an acute illness with fevers, etc so Dr. Edson felt that an infectious cause was unlikely. He brought up the possibility of Wegener's granulomatosis which has now been ruled out with a blood test.

Craig had dialysis on Tuesday morning -- very efficient. During dialysis, an important looking nephrologist came in to round with 3 fellows in tow. The dialysis techs motioned Dr. Kumar over to meet Craig and he spent 15 minutes visiting with Craig about his illness. We were happy about that because we figure the more people thinking about this, the better.

Later on Tuesday, Craig had a mini-liposuction to get some fat cells to look for
amyloid protein deposition. That was negative which is good.

Today we met with Dr Leung the nephrologist again, he reviewed the test results, and recommended repeating the kidney biopsy which will be done either Thursday or Friday. The pathologists here did review the original kidney biopsy from April and agree with the reading of minimal change disease, so that gives us faith in our Seattle people.

Dr. Leung also ordered an iodine test tomorrow which will hopefully give him a better idea of Craig's current kidney function, which is very hard to assess in the setting of having frequent dialysis. Apparently Craig will be given a very small (1 cc) amount of iodine and then they will measure how much is excreted over 2 hours time. I am glad they have a novel way to try to assess the kidney funtion.

We have an appointment with the GI doctor this afternoon. Topics will be: is there a GI cause that could explain high sed rate and kidney problems, epigastric pain which happened in Feb at start of illness and has recurred intermittently during course of illness, recent abdominal CT which showed some changes in peritoneum (lining of abdomen), elevated GGT (liver enzyme) of 544, and Craig's hemochromatosis. That should keep us busy, hey?

So no firm answers so far, but it is a good feeling to be trying to figure it out in a more intense way. Craig thinks the cause is not enough Coronas!

Looks like we will probably return to Seattle this coming Saturday. Not sure if we will need to return to Mayo at some point. So that's the latest from Lake Wobegon.

Love, Sharon