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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Important Article: Hospitals Struggle To Address Terrifying & Long-Lasting ‘ICU Delirium’

I don’t mean to alarm anyone with sharing this.  But it is a concern that sometimes can or might happen to transplant patients or those in the hospital who need for surgical or other reasons to spend time in the ICU.

It’s also good for professionals to be aware of this too, so they can watch for signs to minimize the potential impact it may have on someone they love/care for.

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Halfway There…

Last night I hit 25,036 words! I consider this as pretty amazing for me considering how off my attention has been at points & how crummy I felt the first part of the month.

I’m still a bit behind, but not terribly. I still need less than 1800 words a day to finish on time. I’ve been doing over that pretty consistently or if I’ve fallen a little short, I’ve been averaging the new daily average or better which is around 1700 words.

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