I am Grateful for: the lack of technology during my youth!

Ugh! Poor kids today. They have many opportunities to publish the very worst of themselves on the regular. I have a few young Facebook Friends (children of my peers) and when they show up on my fees, 9 out of 9 times, I cringe.

I cringe, in large part, because I have no confidence that I would not have also posted moody, passive, accusatory, entitled, and just plain dumb things. I was fortunate that my only emotional outlet came with a pen on a rope and a cheap gold lock and key.

I am Grateful for: Technology

I can't imagine the last few years without all of the tools I literally hold in my hand. From the very important to the very frivolous, I have been successful in ways I could have never been without it:
managing meds
managing contacts
managing appointments
managing sanity
managing social awareness
and on, and on, and on!

I am Grateful for: Good Conversation

I am always game for a good adventure or first rate entertainment, but my favorite way to spend time with a friend is deep in good conversation, and a bowl of salsa. I am very fortunate to have many good discussion partners in my life.

I am Grateful for: Life

I get that being grateful for life can sound pretty cliche...but I really, really, really am so glad to wake up each morning and breathe. If it weren't so time consuming, or expensive, or come at such great sacrifice from another, I would suggest that everyone undergo heart transplant. I rarely get bugged, and never get angry. Most everything falls somewhere between "funniest thing all day" to mo big deal...and it is awesome and I feel bad for those who get caught up in the small, or insignificant, or inconvenient stuff.
I still believe that I may never adequately have the words to express how deep and grand and miraculous the changes have been for me. For now I can simply say I really like being alive.

The KSL Story

Video and transcript here:

http://www.ksl.com/?nid=148&sid=25042732

Toward the end of 2012, I was introduced to Intermountain Donor Services (idslife.org) through a new friend who works as a procurement technician for bone and tissue donation. I signed up to participate in their volunteer training, learn how to best tell “my story” to a group, and assist at health fairs and speaking engagements. My motivation to be involved aligned two major needs I was feeling; 1.) to give some kind of purpose to my purposeless life, and 2.) find an outlet for expressing my emotions for a yet unidentified donor.

During the same time, two sisters-in-law encouraged me to do some writing to share my thoughts to be published on their two very popular food blogs...I finally came through in February. That article was seen by another new friend, and producer at KSL, Candice Madsen. She asked about doing a story and I trusted her to make it about organ donation and I felt like maybe this would be an opportunity to educate just another small handful of potential donors.

We arranged for filming to begin 3.13.13, and a small group attended my Heart Failure Clinic appointment IMC. It was odd having a crew there for one of my hardest appointments so far. We talked about my increasing Pulmonary Hypertension pressures, the risks of dementia and alzheimer's due to Atrial Fibrillation, radiation poisoning from the excessive images and scans necessary to monitor my care, and the hard fact that not every patient lives to see a donor.

The appointment was heavy, but I had agreed to continue filming back at the house and so I boxed those gloomy emotions for later.

At the house Candice asked great questions, some of which I had thought through many times, others I’d never considered. We wrapped things up and as Candice and Darren packed up their gear, Candice joked that now filming was complete, I was free to get my heart. I thought she was funny, but inside my “emotional box” was already spilling open.

Typically I call my parents following each appointment and give an update. They were vacationing in the Bahamas with John and his family, and I was glad that I would have some time to organize my thoughts before I would have to share with them the loss of hope I was feeling. With a little prayer and quiet time to think, I decided to set some short term goals so that if I really only had a few months left, I would be able to finish some important things on my way out.

The next morning, Thursday 3.14.13, in a haze of confusion, I found myself sending the following text to Candice: “I have a possible donor. Waiting for a final call from hospital, but it may happen today!? You are a good luck charm!!”

Candice and her cameraman Darren came during my 9 hour pre-op wait to capture a little more footage and speak with Brett and Ryan who had come to wait it out with me. The shots she used from that interview, were the hardest for me to watch during the final story...I looked terrified! Two weeks later, Candice played along as the doctors teased a discharge date every day for the next 4 days then came to interview my mom and capture my release (courtesy of the outrageous MA, Torg).

Personally, it was really uncomfortable to do, but as a gesture of gratitude to the woman who made a choice that saved my life and gave me the gift of a new start at life, it was worth it.

Smile

I attended a satellite broadcast of a Josh Groban concert with my friend Sherrie Willey tonight. Josh sings the kinds of songs that make me contemplative and one song specifically caught my attention.

(a previous Groban performance)

(music written by Charlie Chaplin, 1936. lyrics added by John Turner and Geoffrey Parsons, 1954)

Smile though your heart is aching

Smile even though it's breaking.

When there are clouds in the sky you'll get by.

If you smile through your fear and sorrow

Smile and maybe tomorrow

You'll see the sun come shining through

For you.

Light up your face with gladness,

Hide every trace of sadness.

Although a tear may be ever so near

That's the time you must keep on trying

Smile, what's the use of crying.

You'll find that life is still worthwhile-

If you just smile.

In spite of disappointments and unanswered prayers, I have felt mostly happy the past year. These lyrics nicely sum why I am grateful to be able to smile day, after day, after day.

p.s. 241 days, and still smiling.

A Low-Effort Blog Post

I get a lot of "encouragement" to blog regularly and I think about it...I even have a few dozen unpublished articles written in the archives...but when I received an email from an unidentified Uncle, I decided to give in to the promptings.

I'll make some effort the next few days to write in detail about some of the things that have been happening, but tonight I'll just give a quick bit...

Today marks 232 days on the transplant list. Initially I had expected to have had the transplant, completed rehab, and been back to work by now. I was so off on my calculations!

Most of the time I feel peaceful and strengthened and patient. I feel those things deeper than I have any right to feel in my position. I can't help but credit the thoughts and prayers and fasting that is done in my behalf from so many people...I feel fortunate to be able to acknowledge that power in my life.

But occasionally, I give in to the worry and fear and desperation of so many unknowns. Since around Christmas, living in my body has felt increasingly difficult. I had begun to think that I was losing some emotional fortitude, so it was actually a big relief to hear on Thursday that my condition has worsened significantly and I would be scheduled for my 3rd Cardiac Ablation February 12. I am under the care of a new EP, Dr. Jared Bunch, who comes as highly recommend as Dr. Chun Hwang.

I can't help but look forward with a little unrealistic optimism...so I'm still hoping the new heart is here before we have to do the procedure in a couple of weeks. It could happen, right?