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.
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.
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.
This is by far the hardest post I’ve had to make. I’ve endured many significant losses in my life. Some of them I’ve posted about here. But this is by far the toughest. I’m grasping for words.
Last night, I celebrated my one year transplant anniversary. At that time in 2016, I was coming off the ventilator & breathing my first new breaths on my own.
I still remember those moments. Still remember crying when my surgeon showed me my first x-ray of my lungs.
I posted this to another social account. But I felt it was worth sharing here:
I had to start using an Accu-chek meter, since I lost the headphone jack when I upgraded my iphone (for free) recently.
My Dario meter, which I loved, couldn’t be guaranteed accurate with using the new Apple dongle/adapter.
They are working on a compatible replacement part but it still has to go through FDA approval so who knows how long that will take.