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.
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.
Why is it the only time we can bring ourselves to talk about mental health issues out in the open is after a celebrity suicide?
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.
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.
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.
I honestly forgot about this event until last night when I received a reminder email & updated agenda. My local hospital was having a one-day symposium at a nearby campus & a few months ago had asked me to be part of a roundtable about lung transplant. It finally hit me last night that we are at the end of the month.
A few days ago (on 9/2) I made my 9 month transplant anniversary.
A few weeks before that I had another bronchoscopy because my numbers were down.
All appears to be OK. No rejection. That’s good.
I’m hoping the fall brings better breathing numbers.
AS I LIVE & BREATHE 