For the past few years it was pretty hard for me to see movies.
For one, I was worried about my oxygen tank running out (I had one leak in the theatre once) & it was hard to fit it in the seats even in the disabled seating area.
(Even when I had my portable concentrator I was self conscious about if it was making too much noise even when it was stowed under my seat.)
But now, post transplant I find I can go to a matinee & enjoy myself without having to worry too much about crowds & germs (I do carry my mask in case).
My attention is also better.
It’s a relief because I really do enjoy movies, documentaries especially.
As promised, I have another great share from Erin Gilmer. (You’ll remember last month I shared a post from Erin’s blog, Health As a Human Right.)
She graciously gave me permission to re-share. It was published to her blog back in May. I know there’s been times where many of us can relate to what Erin shares below.
It speaks volumes about the pressures all of us with chronic illness, rare disease & disabilities face when trying to manage our own care proactively in a less than ideal system.
What It’s Like
Erin Gilmer & I have became fast friends when we started interacting on Twitter. She & I relate on a lot of levels what it’s like to live with chronic illness.
The HOPE Act was a big move in reversing the stance of disqualifying donors & patients alike because of HIV Status. The passage of this act in 2013, led to changes & developing safeguards for transplants in the HIV population.
“Before this act at least 500-600 lives were lost per year because both donors & patients were disqualified from organ transplantation. ” (A statistic taken from this article.)
I had found out recently about this insurance-free approach to healthcare from periodic excitement about it on Twitter. Yet, I hadn’t seen it in action yet, so it was harder for me to grasp the concept & find out exactly how it worked.
Very recently, of my friends alerted me to the fact that it is indeed in our area now by pointing out this article in one of our local news publications. It’s a great practical explanation of how it works (from a practice who has moved to using it).
This was a difficult alert to read. However, I commend my center for looking into such issues & challenging transplant centers as a whole to do better by their patients.
While this was a liver transplant based study, I am sure livers are not the only organ that are affected by such practices.
I read this article just now. I don’t even have the right words to put this post together, because I am seeing red. I am devastated for this woman & her family.
I am not a self-loathing Caucasian but I admit when it comes to healthcare I am relieved that I am not subject to certain injustices & stereotypes because of my heritage. Stories like these really disturb me in a deep way. This woman was my age so it also hits home a bit harder.