While planning my life the past two years I've faced remarkable detours. When one reads the word remarkable the inclination is to think the reference is one of positivity. The antonym to remarkable is ordinary. Nothing about my life has been ordinary the past couple of years (or ever, actually), but especially the past 4 months.


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Last night and this morning I've been a little weepy.
Don't panic! I'm allowed to be a little weepy. Okay?



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Some of this post is repetitive of past posts. Bear with me.

Just a mere 5 months ago I was a rock star candidate for a lung transplant at Vanderbilt. That plan was demolished with the discovery I have insanely high PRAs. (Google this.)

No problem everyone thought. Cleveland Clinic specializes in high risk transplant patients.

While I waited to hear from Cleveland Clinic to be evaluated and listed, tentative plans were set in motion. I started looking for a home in the Fan District of Richmond, VA. My family *committee* and I had determined I could relocate sooner than anticipated because Cleveland was going to become my primary medical center. My family and I all knew that eventually I would move to Virginia. My enthusiasm was keen as I researched the historic areas in Richmond. Hope festooned my days with all my forward thinking plans.

But the discovery that my PRAs are so high meant I was given 0% chance for a donor lung - not even a match close enough to douse my body with immune suppressant drugs for the rest of my life that would probably be spent in a hospital.

It was all taken away from me so fast.


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But I have a story to share. It's a true story. Something I just realized a week or so ago. It's a great story, a wonderful story - inspired with a pinch of glitter.

In August of 2012 when I was diagnosed, I was advised my BMI was too high to be evaluated for a lung transplant at Vanderbilt. I only had to lose 5 pounds. I even got to the point where I only had to lose 1 pound, but for 2 years I never reached the required weight... until August 2014.

I can recall over time thinking, "What the hell is wrong with me? I just need to lose one pound in order to be evaluated!"

Upon reaching the required weight, I was evaluated. It became the onset of everything being taken away from me... every shred of hope, every dream, every thing.

Do any of you see where I'm going with this story?

During those two years when I didn't lose that one teeny tiny pound, my life was full of hope and forward thinking. I've thought some about this. What if I'd known what I now know? I wonder if I would've laughed as much? Taken the train trip with Abby? Driven to KCMO or Virginia. I wonder if I would've fallen into a trap of bitterness and despair.

I write about this because I'd originally wondered, as did many others, why Vanderbilt hadn't done that simple blood test two years ago and discovered my high PRAs?

This question has brought confusing thoughts into my head, but I now clearly realize that I'm so very glad I didn't know about my PRAs sooner.

Gah. I don't know how to end this except to write that I think I would've still lived my life fully and gladly, but with less sparkle. It's harder, more difficult to live with sparkle when all hope is taken away. When hope is taken away, life becomes dimmer, more serious - or something like that.

But I think my family and friends would agree that I've continued to live my life as fully and ornery and happy as always. Every day I'm so full of gratitude that I haven't allowed bitterness and despair to litter my heart and thoughts.

I am one lucky woman.



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But back to my weepiness. It's just because last night I was thinking of those days when I was so excited about looking at homes in Richmond. I love my mountain life, but Richmond held my future dreams.

I know I'm sliding into home base, but with Pirfenidone, I'm aiming for extra innings.

Thanks for stopping by - listening to me yak.

Love.





I've posted this photo before - it's one of my favorites taken at David's graduation from W&L Law School.