Monday, June 28th, 2010

Hello dear friends and family --

Amanda wanted to see her Daddy ASAP today so she hopped out of bed at 6:30 am to drive down to the hospital with me -- she wanted to wear her Acorn brand slippers but we could only find one (Sparky dog?). Craig had had a very restful night sleep, save the 4:05 am blood draw. Today's creatinine is 4.09, down from 4.20 yesterday so definitely heading in the right direction. The BUN kidney test is still rising (105 today), but we are told that it can lag behind a bit.

The doctors are switching from IV to oral Lasix (diuretic) today (80 mg bid) to see if there is a response to that. Not as much fluid coming off as we would like, but until the blood albumin improves (1.1 today) it will be stubborn. Apparently the extreme fatigue and weakness are due to this low serum albumin.

My Mom keeps asking me what the cause is, and so for those of you who are interested or haven't heard the whole story, here it is in a nutshell (and please weigh in if you have any ideas!).

In January Craig had 3+ protein in his urine on a routine physical.

In February, while at the Olympic Games in Vancouver, he was bothered by a persistent epigastric pain.

In March, he flew back to Iowa for a broadcast about his Mom, and had leg pain and thought he had a DVT (blood clot). In the ER, they ruled out a blood clot, but his total serum protein and albumin were extremely low.

When Craig got back to Seattle, he saw his internist and a nephrologist and was found to have massive proteinuria, which is too much protein in the urine (>8,000 in 24 hrs; normal is <150). He had a kidney biopsy that was normal, and therefore diagnosed with "minimal change nephropathy". He has had a very extensive workup for cancer, infection and autoimmune diseases. Everything has been negative.

In addition to the abdominal pain, he also had a loss of appetite, weight loss of 20-25 pounds, and a sed rate (nonspecific measure of inflammation) of 100 (normal is <20).

The only time he got better was in late April/early May after he was treated with Biaxin for 2 weeks for a concomitant, X-ray proven sinus infection. His urine protein dropped to <2,000, his serum albumin rose to 2.7, his sed rate dropped to 20 and he felt tremendously better. No one understands why this happened.

Craig had travelled to Ecuador in April of 2009 with Nick and stayed on a dairy farm and ate cheese made there. We asked for tests for Brucellosis, a bacteria that can be found in cattle and unpasteurized dairy products. The first tests were + (IgM was positive, IgG was negative) and we thought we had our cause. However, treatment for that (first sulfa and rifampin, then doxycyline and rifampin) did not result in any improvement. Biaxin is supposedly not a treatment for this.

In early June, he became profoundly weak with increasing abdominal pain and that is when he was admitted to the hospital. His urine protein was back up to >8,000 and his serum albumin had fallen again to <2, but now he was also developing a type of "kidney failure" known as "acute tubular necrosis" with a rising serum creatinine. This could have been due to swelling of the kidneys from the low serum albumin, a reaction to the high dose sulfa antibiotic, a drug reaction to a blood pressure med (Lisinopril, an ACE inhibitor) used to treat proteinuria, or due to too low a blood pressure and underperfusion of the kidneys from the BP med (take your pick as to the cause).

Are you with me so far?

The nephrologist tells us it will take 3 weeks to recover from the acute tubular necrosis and 3 to 6 months to recover from the minimal change nephropathy. Treatment for the latter is drugs that suppress your immune system, like high doses of prednisone (steroid).

So now you know as much as I do. I tell my Mom that the doctors believe they have a diagnosis, but as is often the case, there is no known cause.

We received the most amazing homemade chicken pot pie from friends Pervin, Shashank and Mansi today, with the top decorated like an American flag!

I managed to bang 2 cars (my white Volvo and Craig's silver Suburban) into the same pole in a hospital parking garage on 2 different days. The first incident resulted in me buying 4 new tires, the second an estimate of $2400 at the Edmonds Autobody shop today. Nice going, Sharon!

I am working tomorrow. I like thinking about other people's problems for awhile.

Love you all, Sharon