Nine Months

Hey, kids! Unable to sleep (once again) I figured I'd bring you up to date.

I had another full day of tests at Stanford today (well, yesterday to be technical, as it's after midnight now) and everything went hours long. I was soooo frustrated. These days consist (typically) of:

1. Lab (blood draw)
2. Radiology (chest X-ray)
3. Clinic (where I actually see the doctors)
4. Echocardiology (echo of the heart)
5. Biopsy (less frequently now, but where they go in through the femoral artery and take a "nibble" of the heart muscle)

Normally, I can get #1 and #2 done in less than an hour. This time, just the lab alone took over an hour. That pushed #2 to the end of the day because I didn't have time before #3. #3, which should take about an hour, took two. #4, which normally takes 30 minutes, was delayed over an hour because the previous delays pushed me all the way to lunch and the echo technologists went to lunch. I should have been done with #4 by 11:30AM. I finally got out of that at 2pm. THEN I was finally able to get to Radiology for the X-ray -- where the computers crashed!

Finally, three and a half hours late, I was done.

Things look okay. They buried me with numbers (lab results), few of which I understood but almost all of which were encouraging. A new development this time is another impact the kidneys are having. They are working better than they have been but, because they aren't "humming", they aren't telling the bone marrow to create quite enough red blood cells. This has caused me to become slightly anemic. For that, I have to take a shot of Epogen once a day, three times a week, for two weeks. That and an increase in my iron supplement should take care of that situation.

Good news came when they dropped the dosage of two of my three immunosuppressents by 25%. Hopefully that will reduce the tremors I still have and maybe the sleeplessness. For the most part, other than the frustrating delays, it was a good day and I look forward to being home for the holidays this year.

Significant dates are coming up. For example, in 10 days it will be one year since the medical profession here in Fresno gave up on me and told my wife, "He's really, really sick and there's nothing more we can do for him."

Talk to you later,
Sean