THREE YEARS.

IT’S MY 3-YEAR KIDNEY-VERSARY!!!

That’s right, 3 years ago today I received new life in the form of a transplanted kidney. It saved – and radically improved – my life.

I met with my nephrologist (kidney doctor) in October and she gave me 2 thumbs way up on the condition of the previously-owned kidney. All my regular test numbers have been stable for a long time.  Unfortunately, the 2 years of treatment and dialysis, and now 3 years of recovery have, as my doc said, deprogrammed my body from activity. That’s why I still fatigue pretty easily. I’ve been able to push it here and there, and survive. So, she now has me on a regular routine of increasing activity to strengthen my body and stamina.

I’ve found that my senses have been on overdrive this week, leading up to this anniversary, much more so than the previous 2 anniversaries. Probably because there’s way less recovering, which has made more room for reflecting. Alotta misty moments. As the kids say, I’m feeling all the feels.

Stacy and I decided that survivor afterglow encourages deep gratitude…so blessed beyond what I deserve.

Deep gratitude for those who made this renewed life possible – the amazing people in my kidney chain, especially the donors – Breelyn, Emory & Glenn; the medical nurses, doctors, surgeons, technicians, pharmacists, coordinators; good friends who supported me in countless ways; family who stood with me, sometimes carrying me; a wife who fought for me, did things for and to me that I know she never imagined she would have to, loved me in ways never expected, and is still standing through a lot of trauma, unknowing, and anxiety; and to God my Father, who dished out a load of mercy when needed, comfort in times of intense darkness, and unconditional love at every turn.

So many of you were – and continue to be – part of the overwhelming cloud that covered us through this journey, offering thoughts and prayers that were mysteriously felt and strengthening. I can never say thank you enough.

2019 will continue to be a year of transformation…and alotta gratitude. I cannot wait.

 

 

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Joni.

This is Joni, my angel dialysis nurse from 4 years ago. She helped bring me back from the brink of death to a more functional, healthier place so I could get through a tough pre-transplant process. Had a beautiful, short visit with her today.

She, and her fellow nurses, give life to so many people with hard lives. She will always be an important part of our story…

 

Two thumbs up!

I had my routine, 2-year biopsy two weeks ago. Then at this week’s meeting with the team at Scripps, I got two thumbs up for my two-year check-up!

My kidney biopsy is clean and still no signs of my body trying to fight off the new kidney. Now only annual office visits from here on. (And no more biopsies!)

Pretty emotional with all this news. Very reflective on this journey of the last few years. I already considered myself very blessed by God, but somehow that got dialed way up and I ended up with TWO families – of course Stacy and the kids, who were so supportive through this journey; AND my Kidney Family, those in my kidney chain and their loved ones (a dozen beautiful people!). And my amazing cloud of friends & extended family humbles me with their undying support.

God is good. Life is good.

Below are the plaques on the Living Donor wall at Scripps Green Hospital for Emory, who donated her kidney on my behalf so I could get the kidney I needed from Glenn.

Preach.

This is more of a follow-up to my earlier update this week. This morning I delivered a message to my home church, reflecting on the last 4 years and the crazy roller coaster of kidney disease.

My wonderful daughter Tiffany videotaped the whole thing – just a tad longer than a sitcom, though probably not as funny.

Hope it brings hope to folks who need to hear it…

 

KidFam!

An AMAZING night with my kidney family! Many converged on Palm Desert for Coachella, so Emory flew down and we drove out this morning. Our first time meeting the spectacular Bree, the altruistic donor who.started the chain that saved my life and Heather’s. Very fun and emotional time with these lovely folks who truly are family.

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deepBreath

Biopsy report: The kidney is VERY happy. (Thanks Glenn for such a great one!) No signs of rejection. No abnormal scarring.  One year is a big milestone that I am thankful for. (Last biopsy will be at the 2-year mark.)

SO thankful to God for His grace and sustenance; to Stacy for her undying love and advocacy; my family for helping me feel normal (well, Atkinson normal) through this; my other kidney chain family members; and to our church, my work, and all our friends for your massive support and prayers.

Now, excuse me while I fully embrace this wonderful life I’ve been gifted.

ONE-YEAR KIDNEYVERSARY!

That’s right, one year ago today I received my new kidney that saved my life. How can it feel like 10 years ago AND yesterday?? I’m much more emotional than I thought I’d be – have been for a few days. It’s been a long 3-year journey – autoimmune disease diagnosis, treatment, kidney failure, dialysis, transplant, rejection, treatment, recovery. But those are just steps along the way.

Here are two much more important elements of my journey:

People – my Angel Wife, Stacy (without whom I would not be alive), my children, extended family, friends, church, work, medical professionals, fellow patients – and, of course, my partners in our amazing Kidney Chain: Amy, who’s death from cystic fibrosis inspired cousin Breelynn Horn to be an altruistic kidney donor; Heather Kantor who received Breelyn’s kidney; Emory Fuqua who donated her kidney on my behalf to Laurie Dietrichson Troxell in Colorado; and my brother-from-another-mother, Glenn Croc Millar, who donated on behalf of Heather, and gave me his kidney. (I know that’s confusing – here’s a better explanation)

Impact – people have been asking me a legitimate question: Am I glad 2016 is almost over? First, I’m typically not one to regret. What happens happens – it’s our response to it that matters. Second, every step along this journey has become part of my DNA. It has imprinted the experiences on my spirit. It has fundamentally changed me in so many ways. My perspective on life and the future has been transformed. God has worked each step for my good, who is more concerned with my inside (WHO I am) rather than all the outside parts working right.

All signs point to my new kidney doing great. I’ll have my one-year biopsy next week to confirm. Recovery from the rejection treatments and my body just getting used to this new normal has been a sloooow process. I’ve only started to feel significant improvements in my strength and stability over the last 5 weeks, which made for a much happier Christmas.

We are so thankful to God for His grace and mercy through this, and to all our friends around the world for their support and prayers.

I said YES!

BLOWN away!! Got a package tonight, opened it, and see this beautiful invitation to perform the wedding for Greg & Emory! Emory is the amazing person who donated her kidney so I could get the kidney I needed. I am so honored and overwhelmed. They got me good!! (And check out the PERFECT cuff links they gave me for the wedding – last pic.)

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Greg & Emory with a pic of her donated kidney

Surprise!

What a special surprise today…got this amazing, handmade pillow from Carol Tummarello in Texas. Now understand that I have never met Carol. She is my daughter-in-law Sarah’s Grandma sister. What an angel, and an inspiring message. Hugz Carol…someday in person!

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Job help

My angel kidney donor, Emmoree KF, was just laid off from her job – one of 50 people. She is not just a sacrificial, amazing person, but sharp as a tack and great at what she does: Events and event marketing. She lives in the Bay Area, so if anyone up there knows of any opportunities, please pass it on to her or me and I’ll get it to her. Thanks!

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The Spoon Theory

No other resource was more helpful in assisting my friends and family to understand what it was like to be me while battling chronic kidney disease.

If you deal with chronic illness, please read this, then forward it to those closest to you. They will be enlightened and you will be relieved when they don’t pressure you as much. Many times my folks or kids would ask how my spoons were doing.

This is from the website But You Don’t Look Sick. You can also download this article in PDF format or get it translated in Spanish, Hebrew, and French.

Read it in English:

The Spoon Theory by Christine Miserandino

Prison Break, Part 2

Got some wonderful moments at the beach today. (Second half of Crystal Pier closed due to high surf.) Added bonus! Time with our dear friends Fred & Nancy Gale, who stopped here to visit on their way home to Boston. Nancy took on breast cancer last year and won! So we had much to talk about, including so many shared experiences on our own journeys.

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