I mentioned the only reason I could embrace the moment was because the hospital confirmed they received all my medical records.  So, what does a confirmation mean if the doctor never looks at what you sent them?  The answer is nothing.

Unfortunately, personal advocacy means you must continuously put yourself center stage.  Effectively you must be the most annoying person in the world if you want to avoid being left behind.

It’s pretty scary.

A more detailed Conversation

So, what medical information did I gain from this?  Not much.

While in New Orleans I spent a great deal of time laying inside of fancy, expensive devices.  I drank interesting fluids after being injected with all sorts of mysterious serums.  It was great to get these tests done, if I were smarter, stronger, perhaps if I had more wisdom I would’ve asked why couldn’t I do these tests back in Saint Louis.

While in New Orleans I was only able to read the results of one scan.  The report indicated that there was something described as a mass effect in my liver.  Specifically, it read: “Right lung has been resected and the right thoracic space is largely filled by liver and a trace amount of fluid at the right lung apex. The liver produces some moderate mass effect on the right side of the heart.”

When I read it on the report I felt anxious, perhaps it meant nothing, perhaps it meant something.  Any news feels like bad news, that’s the nature of Hope the Mouse.  I looked up what mass effect was, mostly it brought up video game stuff and references to cranial tumors.  That wasn’t a fun thing to read, but instead of worrying about it, I kissed my girlfriend and returned to the fun adventure of exploring New Orleans.

Talking with the Specialist

When I met with the doctor I asked him if he had reviewed my scans and tests.  He said no.  I asked him if he would like to see my medical records and the scans that I brought and he said yes.  This was the first time that he read over my medical history.

Once he opened the file I asked him if my liver had moved up into my thoracic cavity and he quickly said no.  Then I asked him what a mass effect was, he didn’t respond so I pressed the question again, this time handing him the report from the scan I got in New Orleans.

He took the paper and then continued to stare at the Ga 68 scan on the computer screen.  Many moments were spent as he complained about the quality of the scan, saying the file was organized in a way he wasn’t used to.

I asked him again what the mass effect of my liver might be.  In response, he said he thought that it was most likely my heart pressing up against my liver. He went onto say that there was a chance I might have to have surgery in the future if it became a problem.

The most important piece of information he gave me was to have my port removed.


What was the medical value of this journey?  I need to have my port removed.  There is a mass effect in my liver.  I have a surgical screw in my hip.  I learned that if you want to become your own personal advocate, everything has to be confirmed.


Personal Advocacy Resources

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