A year ago and BK

Today was the first real day of Medicine X. At first I thought I might be in the wrong place. I was at a medical conference and suddenly a rave broke out. They started the day off by pumping the room full of dance music and flashing lights. Quite entertaining really. Skewed voices past presenters with memorable quotes echoed in through the music. Eventually a more conference like atmosphere did return and the day was on. It really was very entertaining, stimulating, and thought provoking.

The balance if attendees really is a balance. Lots of medical professionals, students, tech personnel, some pharma folks but so many patients was the amazing part. Riding in both camps I have a pretty sweet vantage point. I know today I felt a bit like the pharma and physician bashing was a bit heavy but I understand. The people here as patients are true advocates and their concerns are the megaphone of so many who wish not or will not speak up.

My only complaint would be they often forget that they are way more competent and health literate that the majority of patients. This does not mean we as health care providers should discount them. We should listen. At the same time they as advocates should listen to the constraints providers are faced with and the struggles we face in attempting to provide care.

This being said the major take away I have from today was highlighted early in the day by the keynote speaker Daniel Siegel that as a patient provider teams we need to find a resonance between the parties to create trust which in turn creates a platform to improve health.

This idea really set in as I thought back to a year ago today. This was the night I woke up with what became known to my caringbrige followers as “the perfect torture” a phrase my physician at the time used to describe BK virus which had just shown up. It comes when your immune system isn’t working and your on high doses of steroids. You get constant bladder spasms and there is absolutely nothing to do. I spent the next month pissing literally ever 10-20 minutes followed by what can only be described as the pain men know as a “tippy”. This meant no sleep. There really is no treatment. My doc at the time simply put his hand on my shoulder and said sorry. It didn’t make it better but I knew he knew it sucked. Resonance. Simple.

Tomorrow I give my talk. I hope I don’t pass out. I have a little cheat card. I couldn’t find a 3×5 so I used a recipe card. I hope this really isn’t my recipe for disaster but we will see. I bet I get a few more hits on my twitter tomorrow and hopefully this directs people to my WordPress but for real entertainment you should check out my caringbrige from a year ago. Go to Caringbridge.com and look at the site in general it is an amazing tool. Look up Matt Dudley anyone can visit. It still says Seattle because I wasn’t sure I would ever leave but here I am.

Head Up, Heart Strong. I need a cure.

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