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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2Breathe System – Sleep Help Is Here…

I have pretty much tried everything I can to help me when I have trouble sleeping.

I can’t take Melatonin because it interacts with some meds,  Valerian I save only for mild sedation because with my kidney issues I can’t take it very often.

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Interesting News: Potential New Drug Fights Bacteria & Viruses At The Same Time

This piece from Lung Disease News really had me excited.

My viral infections sometimes morph into a bacterial infection very quickly if not monitored quickly.   I don’t always need an antibiotic but sometimes I do.  Sometimes they’ll put me on one for a particularly nasty infection because they know I can’t clear it like most people can.

I glanced over the study the article pointed to. It’s a pretty fascinating read for science geeks.

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The First Big Drop

I often say the wait for new lungs is much like being on a roller coaster. Kind of being suspended at the top, not knowing when the drops are coming or the loops.  In suspension at the top, being scared out of your mind looking down below at how high up you are.

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To Tat or Not to Tat (Part II): There’s Always A Work Around…

So in a previous blog post, I mentioned how I asked my transplant team if I could get a tattoo.

I understood why they told me no but I was disappointed.  Yet as usual, I find my own creative ways around disappointments.

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A Very Interesting Read…

Yesterday was my birthday.  I turned 39.

So I am pushing up the hill & at the top, but not over it…

I have grappling hooks at the ready because I plan on camping out here awhile.

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Maybe The Advent Of Drones Isn’t ALL Bad?


I admit watching video of the Phantom 4 drone really creeped me out.   The thought of Amazon dropping random packages by drones on my door step sometime in the future does kind of creep me out too.

But I came across this interesting article where I can see an altruistic & useful purpose for a drone & figured it was worth a share.

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