A Few Thoughts

This note from Jason Kander really hit home.   Though I have not served in the military I understand the stigma & bias surrounding PTSD.

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Passed The Year & A Half Mark

It’s been awhile since my last update.  In April, I had a procedure that kept me overnight & was my first surgery after transplant.  I have one more procedure after Labor Day, hoping this is the last of it for a good stretch.  This is the flare up of my TSC which usually acts up after the LAM settles down.

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“Support” Staff Blocking Care

I’ve had a few instances now where I’ve really lost patience with healthcare staff as of late.  As have other friends with their situations.  It’s a growing trend that needs to be addressed.  Some of these support staff are anything but.

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When Other Medical Teams Fail Their Transplant Patients

I haven’t posted a personal update in a minute.   Part of it is because I’m extremely worn & frustrated & I don’t want that to bleed out and be perceived as whiny.  I know it couldn’t be farther from the truth & it’s not, but still this is what my head tells me sometimes.

Even though I constantly tell other friends with transplants who feel similarly that they are doing anything but.

While rather lengthy this update encapsulates a few months of frustrating experiences which I felt important to share with others.

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Review/Beta Testing: MySpiroo

I signed on to be a beta tester for this device a few weeks ago, maybe it’s a month or more now.  (Things have been kind of a whirlwind).  I was excited when I received the package with the Myspiroo because it’s a smart phone spirometer, which I have been hoping for even before I was transplanted.

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