Review: A Love Worth Giving

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.

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REBLOG: But You Don’t Look Sick?! – A Letter On Why I Hide My Illness

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.

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REBLOG: #Spoonie Yoga Crew

I love this idea,  & have often felt the same way.   As my lung disease has progressed, certain positions have become harder to do & others send me spiking or cause intense pain.

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Learning To Live With Frustration…

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.

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6 months & still waiting

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.


Livid! Beyond Words….

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):

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A Complaint Letter To My Team

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.

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