Below is a Facebook post that applies here, too. Below that, is additional information I'm not quite ready to make as public beyond here.


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It was a long day at Vanderbilt. I will be quiet the next couple of days - resting, recovering and perhaps calling a few friends. My new word is palliative.

I am so full of gratitude for my beautiful life, family, friends. Linda Weaver Jones is a trouper. How can I ever thank her enough. She was beside me every step. We were quiet together. Held hands. Squeezed. Gave weak smiles. She was amazing. A sprinkling of tears barely dampened our day. She is undiluted joy!

We wait to hear from Cleveland Clinic. Soon. Thanks for your prayers! They're still in motion. I swear I feel the energy and am grateful beyond measure.

Many thanks to all of you - my heroes.


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Though the transplant program at Vanderbilt crushed my hopes, the people I've seen the past 2 1/2 years at the Pulmonary Clinic have been amazing and continue to be.

Wendi spent a great deal of time with me yesterday. She was professional, direct, gentle. Since my first visit, we have had a caring connection. Her grandmother and I have even exchanged numerous presents and cards!

I think this happens a lot. When a patient is seriously ill and is cared for by the same people over several years, it would be unnatural to not develop a caring relationship with honest affection.

Anyway, this is the dealio:

I am the healthiest sick person you'll ever meet.

Every organ in my body is very healthy.

My lung fibrosis continues to scar at a slow pace. The fibrosis hasn't become the significant problem.

My lungs (for whatever reason) are not processing CO2 properly. Because of this, any given morning I may not wake. I may peacefully slip away during the night. Can I hear a huge *Amen* for that scenario! Because one's breathing slows during sleep, the CO2 builds up. (These are my sloppy layman's interpretations.)

Palliative care/Hospice will soon become a part of my life. I will meet with a Hospice doctor in Nashville. I'm hoping my eldest can accompany me for this important appointment. Then someone will assess my home.

I am now on 7L02 flow when mobile. 5L02 at rest.

I cannot travel for Christmas, so Christmas is coming to me!

I hope to hear from Cleveland soon. I am so afraid of *hope* these days but I feel pretty certain they will evaluate me. Let's just hope I continue to wake up every morning until then! *laughing*

My PRA situation is better than I thought. 60% range. That means that of all the lung donors, 40% would be a match. Those percentages are far better than I thought.

I've given notice to my downstairs tenant. I need someone onsite with me ASAP. Finding the right person - someone trustworthy and capable will be a difficult task. Maggie, I'm not as isolated as you, but the demographics are a challenge.

Much like I've suspected, I did fall off a ledge the past couple of months. My Pulmonary Function Tests indicate a 20% drop since May. This is considered shockingly fast. There's a word for this kind of drastic decline and I can't recall it. *Sucks* kind of works for me.

There was only a light sprinkle of tears yesterday and they weren't a result of the direct effects of my illness. Any sadness that crept into my day was related to missed opportunities... missing David & Olivia's wedding. Missing the grandchildren that are yet to be born. That's the stuff that makes me sad. Stuff I try not to think about. Stuff I know I can reinvent into good thoughts because I'm incredibly creative and can make all this work... especially because I don't want to have my sadness make my children sad. I hope some of that garble made sense.

Over time I will have special shout outs.

This morning I want to especially thank Anna for the beautiful, brilliant, amazing poem. Thanks, lovey. Your tender heart humbles me with such gratitude.

Eric, keep the faith! You have more than you think! xoxo

Nora: We'll be fine, love. We have too much work to do. This is just a tiny setback. I always travel with heat.

You all are my heroes. xoxo


A favorite photo of my children. Isn't laughter the best ever ever!