Long Time No Update

On December 2, I’ll be at 2 years post transplant.   In some ways it doesn’t seem it’s been that long, in other aspects it seems longer.

I had another blip in my lung function again but rebounded again.  I guess this is just an annual dip due to weather changes.  Which I’m not really surprised by.  I’ve always had sensitivity to changes in season.

Continue reading

Advertisements

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.

Continue reading

“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.

Continue reading

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.

Continue reading

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.

Continue reading