Press Release: Apple & Donate Life America Bring National Organ Donor Registration to iPhone

I saw this press release floating around recently & I was encouraged.  I was happy to see Apple taking strides to partner with Donate Life America to offer yet another way for people to register as organ donors.

Continue reading

Guest Blog Share: What It’s Like

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 

 

On the Radar…

When they told us an OR time (for my dry run) of 10PM, it was about 3pm or after. (I don’t remember exactly, maybe it was even after 5pm at this point because the day was a blur.)   I did a little walking around, said hello to the lung transplant doc on the floor.  After I took a few spins around the unit (I was a little tired)  I sat back in bed & decided to entertain myself while my bestie was over at one of the transplant houses checking in and unloading.

Seriously, lung patients do get a bit hobo-ish.  Especially on the weekend. I had my regular transplant/rehab bags packed since March, just so they wouldn’t be forgotten, but we had a boatload of oxygen,  the concentrator, tubing, & a few other things.

In the event of a dry run, we didn’t take any chances.  Especially on a holiday weekend.

Continue reading

Life-Hacking Oxygen (Part 4)

Now that I’m back to using oxygen tanks/bottles,  I have to plan things a bit more carefully.

I’m lucky that I don’t have to rely solely on e-tanks (the largest size tank), for short trips to the store, going out with friends, & walking around I can get by with a smaller size tank called a D tank if I choose.

The problem is it’s still a bit heavy to be “backpacked” (like I used to do with my M6 bottles when I first went on oxygen).

Yet, I still found a solution (after searching online) because I hate the sling bags the suppliers provide as a carrier for these tanks.

Continue reading

Book Review: This Old Heart of Mine

I had very high hopes for this book.   Like “Pieces of Me” this book had a very interesting premise, along with high praise & positive reviews on both Goodreads & Amazon.

I made it next on my list because I was so impressed by the thought & research that went into “Pieces of Me” that I decided I wanted to read more transplant & organ donation oriented stories in other genres in fiction.  I wanted to see how some of these stories compared to some of the nonfiction stories as far as realism or compelling storytelling.  Plus I wanted to try transplant & organ donation as a theme in different genres & settings as an exploration as to what I walk away with versus someone who may know little to nothing. Or may be a friend or know someone with a transplant.

Continue reading

High 5’s for Teamwork!

I had a productive check-up yesterday.

Later in the month I’ll explain why my appointment was so long.

But so much good came out of it, I’m feeling so much better about things.

Continue reading