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.
One of my volunteer friends died a few days ago. A few mutual friends & I were talking not just about memories but also some really raw & visceral reactions from others in regards to our friend’s death being made public.
I promised to be honest when I started my blog to not just report all the “good stuff” all the time, because like any path, the transplant path has fits & starts, blips, & snags. Mine, overall despite being annoying, have been small. Yet, it’s frustrating at times.
I was notified a little over a month ago that I was selected for the first-ever American Society of Transplantation (AST) Patient Summit in October.
Again, a rare occurrence to get political on my blog. Because whether people agree with me or not, this is a matter of life & death. The AHCA/BCRA must not pass!
I do not joke about death. Yet, after asking nicely with no movement & amendments sure to get worse, I know no other way to get through.
The 13 authors don’t want to be called heartless or murderers then don’t pass this cruel bill.
Some may say it’s extreme, but I’m tired of playing nice & being ignored, & getting canned responses about how I must take more personal responsibility when I’ve taken plenty.
I’ll be sending this mock obituary through to my delegation tonight because I think they need to see the consequences of a “Yes” Vote:
I had another check up Thursday. My lungs are still doing great, but I wish I could say the same about my kidneys.
I started back on Rapamune (sirolimus) yesterday, so I’m confident that might help when it fully kicks in, as it did when I was pre-transplant.
I’ll be posting a bit more often this month because I want to support the first WorldWide LAM Awareness Month.