Someone Needs To Get Their House In Order

There are certain situations that really are troubling & conflicting.  This is one. I feel so deeply for the patients at this center.

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Feeding My Inner (Digital) Geek Helps Me Stay Healthier

I admit it, I’m a hardcore digital & app geek. Probably equally or more so than I am a healthcare geek.  My iPhone is literally another arm. But there are valid reasons for that given everything I need to keep up with.

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Realizing Personal Limitations Is NOT Quitting

I knew one day that I would have a time come where I was physically unable to work a standard workday & still take care of myself.  I had tried preparing myself for that in the back of my mind as I had for other things, like oxygen & potential transplant.  I always felt though it was going to be on my time & my say, not the diseases.  Obviously, sometimes things don’t work out according to plan.

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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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