I had a session (aka “appointment”) with Drac today, which proved interesting on several levels. You may have noticed an extra feistiness in my other posts earlier. By way of explanation, and on the presumption that you may also find some of this interesting, I will give you a report.

First, my own situation is unremarkable, so this paragraphwill be brief: Anemia markers are low but stable. Kidney markers are high but stable. On the other hand, protein is the best it has been since the whole sorry story began. Drac doesn’t want to address any changes of medication during the holidays. And he agrees that is is a good idea that Imuran users should have liver enzymes checked periodically (my liver tests have always been boring, but with AZA, you never know...).

(Speaking of AZA, you sometimes need to keep your local neighborhood pharmacist honest as well. My prescription, which I started two months ago, stated: “Take one and a half pills daily for two weeks. Then take three pills daily.” The next month, I refilled the prescription, but neglected to look at the label. Then, when I ran out, I tried to renew, but the pharmacist said I was a week early. Turns out they were recycling the original instructions, rather than taking the intent of the prescription, and giving me 69 pills for the price of 90.)

Another thing that came up involved my question about blood pressure meds, A recent report suggested that they are, at least for kidney patients, best taken at night. (Better proteinuria results.) I wanted Drac’s opinion. He somewhat sheepishly admitted that he was “a little behind” on this reading. (The study was in a journal that should have been on his list.) But he agreed that this is a good idea.(He was talking about main BP meds. Diuretics tend to keep you awake.)

From there, we got onto talking about the art of diagnosis and the art of the exam. He mused about the old-time cardio profs in med school who could tell everything about a patient with a stethoscope and sensitive hands. “But nowadays, they just do the test,” he said. “I think this is not so much a dying art as a buried one.” Interesting admission, as was his agreement that specialists tend to look for diagnoses that can be explained from their own professional biases. These things reinforced my feeling that it is critical, in the patient/doctor relationship, to work off-script.

I also challenged, slightly, his business model, though my goal was larger. I believe there are excellent reasons to hypothesize that autoimmune diseases are on the rise generally, and in excess of “better reporting” and more frequent diagnosing. Regardless of whether the hypothesis is correct, however, people who deal with such things will be dealing with far more cases. Now, Western Washington has enough population that it could support, I believe, a vasculitis center of its own, especially with a major university med school in the area. And I made the point (thinking all the time about off-script solutions) that this kind of pooled, interdisciplinary approach would profoundly help patients and doctors, and families. I fully believe this. Besides, it would be a great way to involve the researchers in our very human journeys. (Seattle is the home of the Benaroya Research Institute, (www.benaroyaresearch.org), that employs a lot of hot-shot scientists to study autoimmune diseases.). Drac agreed with me. And, I think I did him a favor. He was actually fired up--at least it seemed that way to me--about the possibility of making this happen.

There is my report. I’m still anemic, but maybe I’m not so dead-beat yet....


Al