"Yes, I am thankful and grateful, but something went away in me... it hasn't returned... maybe just need to see more of the moon."


I borrow that quote from a dear friend of mine. She, too, is walking through a patch of bramble. Like me, she lives in a woods of tall trees. Like me, she knew she was giving up the stars and the moon when she moved to the mountain. It was a good trade-off then and still is... but sometimes a person just needs a little bit more moon, more magic... maybe a star or two to wish upon.


*****


I don't know if I've been entirely truthful with you, especially about the transplant evaluation I had three weeks ago. It was an exhausting experience because of the unorganized, unprofessional behavior of several who evaluated me. So much of it was disgraceful.

People ask me how I think up the stuff I write about. I ain't that smart. I can't think up the stuff I write about. I write what I see and hear. I write about what really happens - or at the very least, my truth.

So much went wrong that week, but I want to first focus on what went right. I was surrounded and supported by five amazing people - people who gave their precious time for me, and I'll be forever grateful. And my son observed, I've also been primed for a second evaluation if Cleveland Clinic will have me. I'll be well-informed, stellar!


*****


The thing about an evaluation of this serious sort is that the patient has zero power. It's sorority rush on steroids. Am I smiling enough? Am I dressed properly? Am I engaging? Am I worthy? Am I everything you want me to be so you will give me a chance, a hall pass, a lung or two? Are you impressed that I have five caregivers though married people only need two? Can you see that I surround myself with only quality people - people who love me and want me to be here a little bit longer? I'm the healthiest sick person you'll ever meet. Will you help me?

I haven't the desire to write about all the unacceptable episodes of my evaluation. A few, quite frankly, are some of the funniest moments of my life. My friend and I were often incredulous with the jaw-dropping insanity we encountered. It was disgraceful.

What I do want to write about is the last day of my evaluation, the last leg. Those hideous minutes when my group of five brilliant caregivers looked like they'd been shot with a stun gun. Before the stun gun was drawn we listened to:

1. A financial advisor drone on about the financial responsibilities I'd have - that I might want to consider having a fundraiser. She droned on and on about fundraising money for my transplant.

2. Then two nurses spent way too much time telling us about the transplant program. With great enthusiasm they told us about the notification process when a lung becomes available - they went into great detail. They gleefully told us that some people have even received new lungs after only one month of being listed! Zow Wow! We were jazzed! This was all so good!

Then one of the nurses aimed her stun gun at me and said, "Well, I guess this is a good time to talk about this. Your PRA's are too high. You probably won't be listed at Vanderbilt. Um, actually, you probably won't ever get a lung because your PRAs are too high."

What the donkey-nose is a PRA?

I never flinched though one friend accurately observed how pale I became.

One of my caregivers is a transplant nurse. She knows all about transplants. We've talked numerous times since this disgraceful event. She was appalled.

You see, everyone at Vanderbilt held the power that week. This nurse aiming the stun gun (as well as others) abused that power. It was bully behavior.

I can't really properly describe how unsettling and unprofessional and unacceptable this person was - except to share that some of the people with me that day observed she took way too much delight in slaying me with the bad news. She relished too much taking my life away. It was insidious.

3. After she left, our group looked less animated than the stone statues of Easter Island. We sat there... immobile, frozen, dead as stone. And then a cheerful social worker sashayed into the room and for about an hour reviewed additional details about my transplant that would never happen. Do these people ever compare notes? Talk to each other? Good God.

The next day I continued to be an obedient lemming with the heart catheterization. I allowed tubes to wind through my body to inflate a balloon in my heart - all for an evaluation process that should've been cancelled. I'd already been told by Nurse Ratchet that I didn't have a snowball's chance...

You see? They still held the power. I still held onto hope. And shame shame on all of them for trashing and abusing such a wonderful word, which is often the only lifeline a person has. They also stole my trust and respect for the system.

I never even met the doctor in charge of my evaluation. Was everyone so busy they never once paused to consider the control they had over my life... or death.

I was so easily discarded. And that's why I'm having far more trouble than I'm letting any of you know. I was discarded. I was just a number, a nobody.


*****


With all the blood that has been drained from me the past two years, why wasn't my PRA level checked prior to the evaluation? Why? I fit the profile for high PRAs. So much heartache could've been avoided. My feelings of betrayal could've been avoided. So much hope wouldn't have been siphoned from my enthusiastic heart. If I'd known two years ago that finding a match for me would be so difficult if not impossible, I would've worked so much harder at being eligible for evaluation.

I played by the rules and they cheated. They vandalized my hope.

*****

So, I wait in my home. I wait for a call from Cleveland Clinic and hope they'll find me worthy of consideration. I wait for a call that should've happened a long time ago if Vanderbilt had checked my blood for PRAs earlier. I wait. I wait. I've been told it can take up to 6 weeks. I'm burning sunlight here.

I sit alone in my home. I wonder if this is it. I'll live my last year alone on a mountain in the middle of the woods.

I still play by the rules and do my pulmonary rehab. It's my finest revenge. My last silly string of hope. And I thank all of you for cheering for me.

I'm also still connected with the Pulmonary Clinic at Vanderbilt and I completely trust them as my advocates - keeping me on my toes to be as healthy as possible, continuing the clinical trials that I call Hope in a Test Tube, and finding a hospital that will list me.


*****

I need a little bit more moon. Maybe a star or two.

*****

Every so often I see a psychologist who specializes in nut jobs like me with a terminal illness. I see him tomorrow for a tune-up. Actually, I think my engine needs to be totally rebuilt.


*****


This is me. I'm not a number. I'm a real person.







Thanks for listening.