Adjusting To New Learning Curves (Why It Pays to Be Curious)

One would figure by now that I would know tuberous sclerosis complex (TSC) and lymphangioleiomyomatosis (LAM) inside and out.  I know quite a bit, but there’s always something to learn in dealing with these diseases because of their unpredictability.  Luckily right now, I’m in good shape with the TSC aspects & it’s just tracking research updates & advances.  But there’s a few new aspects that are waiting in the wings for me to dig into.

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Patient Can Be A Loaded Word

The announcement of this year’s theme for NORD‘s (National Organization for Rare Disorders) Rare Disease Day 2016 gave me something to mull over this morning. I’m going to play the devil’s advocate here for just a moment over this year’s choice of theme & slogan.

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I’m Not Asleep…But That Doesn’t Mean I’m Awake

I wish I could take credit for that anonymous quote and the quote on the blog image. They both seem fitting right now. Sleep is something I’m getting more erratically these days. I know it may be just a larger short-term issue right now as I’m trying to develop new routines. But I find it’s annoying to finally fall asleep later at night and then be up right away at 6am.  I can be a morning person when I have to be, but it’s not a natural thing for me. Without my morning coffee or shot of caffeine, forget about it.

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Transplant Advances: Lung ‘Filtering’ Technique Can Reduce Transplant Rejection (article)

In my blog post from 8/4/15, I talked about a transplant innovation called ex-vivo lung perfusion (EVLP). If you missed that post, you may want to go back & read it before reading this one.  (I just linked to it if you need bounce back).

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Internet Trolling Is Everywhere…Even in Transplant World

Normally, I read comments on articles for comedic value & can roll with the punches. Even punches from someone who clearly has no clue what they’re talking about.  However, this weekend I was rubbed the wrong way & maybe it’s the rawness of what I’ve been through the past few months that triggered it.

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Another Possible Tool in the Fight Against Organ Rejection

IFL this site. It always has such interesting content on science with a cool twist in its writing that is relatable to a lot of people, geeks or not.

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2 Months & Counting

I was not prepared for the emotion that yesterday (9/8) brought though I had tried to prepare for that day in my mind for a while once I knew it was coming. Such a mix of feelings. Relief, disbelief, gratitude, & a degree of sadness. I had prepared for this day for a long time, including the possibility I might not qualify for a transplant because of kidney issues or some other circumstance that might have popped up in testing.  Luckily, this is not the case.

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