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.

17917542_10155301066632474_4328079427628634011_o

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.

The Kidney Poem

This was written by the wonderful man that I got my new kidney from, Glenn ‘Croc’ Millar. Perfection!

We have a lot of body parts
And many come in pairs
Arms and legs and lungs and eyes
And yet we cannot share

But then there are your kidneys
And it is now well known
That this amazing organ
Works quite well alone

Which means that if you have a friend
Who needs a new kid-ney.
You can give him one of yours
And again, he’ll get to pee.

Donating is easy
You’ll never miss this part
And you’ll get something in return
A piece of someone’s heart.

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.

A new Christmas

Last month I told Stacy that since I haven’t been able to celebrate Christmas very well that last 3 years, I WILL be wringing every ounce out of it this year. I’ve drug her to parties, receptions, and festivities almost every day this month. It is filling my Christmas tank – my fave season of the year.

I even got to pick the Christmas tree theme – Peppermint! Love my wife’s glorious trees. Makes me emotional each time I look at it.

So grateful for the gift of life.

15541018_10154104174563016_2346389869878586475_o

9-month check-up

A good day. 9-month check-up at Scripps Green. All thumbs up. I tell people that the kidney is doing great and I’m getting there. Still struggle with fatigue and other side effects, but much less. Celebrating with my lovely bride surrounded by the beauty of La Jolla and dinner at Brockton Villa.

14448998_10153889740348016_3858019286225608820_n

Whew.

BIOPSY ALL CLEAR!!

How I’ve waited to hear those words. Just took the first deep breath in six months.

The doctor said no signs of rejection or inflammation. Thus, no changes to meds and no additional treatments. Next routine biopsy in 6 months.

Just trying to be patient waiting for all the prednisone they pumped into me to dissipate. Hopefully in the next few weeks. Then I should feel 100% (something I haven’t felt in nearly 3 years.)

Hopefully you won’t hear from me again for a loooong time with another Health Update.

Thank you all for your love and support! God is good…

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.)

20160706_19381520160706_19382420160706_193857

12493950_10153922076387474_8442480249817207257_o

Greg & Emory with a pic of her donated kidney

The guest who wouldn’t leave.

Many folks have been asking how I’m doing. So here goes…All seems to be well. My labs have been better than ever. I’ll have my 6-month biopsy in about 2 weeks to ensure all is well.

But they pumped SO much prednisone in me, it takes a long time to get out of the system, which means I’m still struggling with the usual side effects. And while it may seem like the guest who wouldn’t leave, Mr. Prednisone saved my life, so he can stay as long as he wants.

But I’m feeling slight relief each week. And I’m able to do more and more. We started water aerobics 2 weeks ago, which has felt great.

Thanks for the continued prayers and support! Next time you’ll hear from me on this will be with biopsy results in a few weeks…

Skin Cancer

13169966_10153551054838016_1643819223_o

Can’t see it very well but…that’s blistering from a date with a flame thrower today.

Went to the dermatologist today – as all transplant patients do – and was told that with the meds I take I’m at a 60% higher risk for squamous cell carcinoma – skin cancer. 

Then he inspected every inch of my body and found multiple pre-cancerous spots on my head.

So he used liquid nitrogen to burn the top layer of skin off all those spots. Not pleasant. So now they blister, then scab, then a new layer of skin grows back.

I have to sunscreen my face every day before going out for the rest of my life.

But, as my son Chris, said, “Yeah doesn’t sound fun at all, but you’re still alive and we couldn’t be more thankful for God for it!!”

Perspective.

>>> NO REJECTION!! <<<

Just left the doctor’s office and that’s the word. Thank you, Jesus!

Week before last my medical team decided to push up my biopsy from tomorrow to Wednesday of last week. The results show much improvement from last months’ biopsy results and no acute signs of rejection.

The simplest explanation of the possible cause of the rejections is an absorption problem of the primary medication used to suppress my immune system, and thus fight off rejection. That med level was dangerously low a few times, which is probably what opened the door to the attacks. In the last month they have gotten that med level much more stabilized and in the range it should be, so everyone is confident that rejection issues are over.

While our initial reaction was tears of joy and prayers of gratitude, we’ve found that our bodies and minds are taking a little longer to absorb this news. We are pretty shell-shocked from the rocky road of the last 4 months – 4 surgeries with sedation, plus 4 biopsies in 3 months, the 2 rejection incidents, Prednisone for 3 months, including two weeks of high-dose infusions, and nearly 40 blood draws. This whole time we’ve been waiting for the next shoe to drop. So to hear that there’s no dropping shoe is wondrous, but foreign, and we are still processing.

I will still have a few check-ups a year and will take the immunosuppressants the rest of my life. Hopefully you won’t hear from me about this for a looooong time.

Stacy and I, and my family, cannot thank you all enough for walking through this journey the past 2.5 years with us. We are blest far more than we deserve.

Our prayer for us, and you: “Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way.” (James 1:2-4)