I’ve watched a good number of transplant documentaries by now. In fact, I’ve become a little obsessed with documentaries as whole at points.
I came across this post & had to add it to my list of great content to share. It mimics how I’ve felt for several years, even prior to the transplant journey entering my life.
Is something I’ve gotten good at during this wait.
I did all the work to coordinate & have them send records, get support lined up, look into housing. I follow up on all of this myself (they don’t call me to acknowledge receipt) & I end up having to cancel the appointment shortly after I book it.
So here I’m at 6 months – no transplant yet, but thankfully no change to my kidneys…
At least I have enough to do today that I won’t sit around and think about it too much.
But with the upcoming holiday I am hoping that lightning will strike twice and I’ll get another call even if it’s only another dry run at this point.
I also have to see if U of Maryland received the faxes my social worker and I sent with insurance info and records.
I can’t wait to be done lugging around tanks either… 15-20 E tanks a week and counting.
Tell me, what kind of company & customer service is this? This is the email I wake up to this morning after being told yesterday there was no issues with bringing me more e-tanks (large size oxygen tanks):
I wanted to wait about a month before posting this. I wanted to give my team a chance to digest it, discuss it at my appointment.
They did respond.
I was relieved that it was positive & productive & they took a moment to really have a discussion about what I outlined. Not all centers are this receptive to feedback, but I’m glad mine is.
They responded with a plan (which is what we were all struggling with trying to get together anyway). Knowing my concerns & where I sensed breakdowns & troubles in writing proved helpful to them. This was the spirit of why I wrote the letter.
I always feel it better to be direct in healthcare when things aren’t going well, rather than let things fester & build.
In transplant world, I think it’s more critical to take this approach since it’s such an unpredictable path to begin with.