Goodbye My Lungs…

I had such a swirl of emotion during that time of my dry run.  I had always thought about doing a goodbye letter to my lungs but wasn’t quite sure about it.  I talk about that here in this past post.

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Movie Review: Over My Dead Body

I really don’t know why this movie didn’t get more acclaim.  It was pretty damn awesome. But finding any follow up news took a little digging.  Which is a shame.   But I’m used to documentaries not getting as much love as feature films.

I have to say I’m quite partial to them, it’s one of my favorite genres of film.

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My Dry Run Was Also A Donation Dress Rehearsal

My dry run on July 2 was also a good test to figure out the process of notifying my LAM research team about donating my old lung tissue & organs to research into my rare diseases.

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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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News Article: 107-Year-Old Becomes Scotland’s Oldest Organ Donor

I think this is a cool story.

I know some serious athletes that are older than average that do amazing things like iron man competitions when most people are thinking of just taking a relaxing retirement.

I say if the organs are in good shape & usable to someone, why not?

Good for this woman for donating her corneas to give the gift of sight to someone else.   What an awesome legacy to leave!

Another Myth bites the dust!

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Useful Pulmonary Rehab Exercise Video

After a recent stint in the hospital, I was waiting for my local lung doctor to be back in the office again to discuss the possibility of pulmonary rehab with me so I could make some decisions.

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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.

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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.

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