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’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.
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’ve made a tough call. I’m not abandoning my play, just setting it aside for now.
A few months ago, my numbers were unexplainably down about 30 perecent.
After some steroid pushes & medication changes, things were still looking a bit funky & my numbers still hadn’t risen, so I needed another bronchoscopy (scope of my lungs).
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.