Lung Doc? Check. Liver Doc? Check. Now what?

So, with a diagnosis confirmed by specialists, I brought the results back to my primary care Doctor. You remember him, right? The Doctor with the heart of gold, but no real understanding of the disease. After much conversation with my wife, we finally decided that I would continue to see him as a primary care Doctor. We knew that down deep, he had my best interests at heart. Now, with a team in place for him to delegate those issues toward, I knew that I had to give him a chance.

One of the funny parts about being diagnosed with a disease like this is that your mind can really begin to wreak havoc on your life. Not in any physical way (at least not at that point), but rather the emotional side of things. Any small ache or pain would leave my head and heart racing: Did this have anything to do with my liver? Is it getting worse? Even the most normal, temporary muscle pain that I wouldn't have given 5 seconds to a few months earlier, suddenly seemed like the end of my world.

It is for this reason that I began to have issues with the team that I had assembled. Blood draws done by my primary care Doctor were entered into his system (he practices out of a different hospital), but never made it out of his office and to where they needed to be at U-M. Using a football analogy, what I really needed was a head coach. He would be responsible for the big picture, every day type items. Diagnosing small issues and recognizing when they were really larger issues that had to be dealt with by a position coach (in this case, the lung or liver specialist). Basically, treat what you are capable of doing, but when it goes beyond your level of specific expertise, recognize it and, above all else, DELEGATE!

When it became clear that my primary care Doctor could not play that sort of role, I knew that I had to make a change. My wife and I went back and forth with the staff at U-M, looking for any local primary care Doctor that they trusted to do what I needed, and was within their system, so that they could view test results without unneccesary delays. After several attempts, lost time, wasted effort, and significant frustration, I was at the end of my rope. It was then that I reconsidered my original choice, and scheduled a meeting with a hepatologist from Henry Ford.