It’s Not Up To Those Who Are Hurting To Make YOU More Comfortable With THEIR Pain…

One of my volunteer friends died a few days ago.    A few mutual friends & I were talking not just about memories but also some really raw & visceral reactions from others in regards to our friend’s death being made public.

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Tiny Bubbles, Er… I Mean Blips

I promised to be honest when I started my blog to not just report all the “good stuff” all the time, because like any path, the transplant path has fits & starts, blips, & snags.  Mine, overall despite being annoying, have been small.  Yet, it’s frustrating at times.

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Hi! Remember Me? I’m TSC!

I had another check up Thursday.  My lungs are still doing great,  but I wish I could say the same about my kidneys.

I started back on Rapamune (sirolimus) yesterday, so I’m confident that might help when it fully kicks in, as it did when I was pre-transplant.

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A Tiny Blip…

Just before my last appointment, I found out I had A1 rejection.

This is very common in the first year of transplant & sometimes even happens to people in the hospital before discharge from their surgery.

It’s the most minimal rejection there is.

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Article: When You Treat A Rare Patient Like A Common One – Bad Things Happen

I came across this article in Rare Disease Report & it did send chills through my body.

Although, it did not completely surprise me (as horrible as that sounds).

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Interesting Read From Scientific American Medicine

This was a professional issue that would irk me while I was working at Medscape.  I’d see such embargoes come through  via email on important information & it would instantly anger me.

I would think to myself, “This is a free press,  if you’re going to release important news, release it when you want it released.  Don’t hold everyone hostage to print it all on a certain day or under your chosen timing & make them sit on it because you’re not ready for it to come out yet. Don’t be an effing tease.”

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