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…

 

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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.

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.

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Next step

I got a call late yesterday that Kaiser approved a 5-day infusion treatment of prednisone that starts Monday. It’ll be 500mg a day. Oh boy.

But I have great hope that this will do the job and pound my immune system into submission and reduce the inflammation in the kidney.

Plus, I’m feeling much better, just by knowing next steps. -whew-

In the meantime, I will take in Good Friday and Easter with new meaning and inspiration. HE IS RISEN!!

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Clear as mud.

So, the biopsy showed significant improvement in the overall kidney. Inflammation reduced enough that they would have patted me on the head and sent me on my way. However, they found a new, small incidence of inflammation on the lining of one of the blood vessels in the kidney. Studies show that if it is not treated it reduces the amount of time the new kidney will be good.

The inflammation is a result of my immune system attacking the kidney, so they consider it possible signs of rejection. Thus, it looks like they will put me through another set of higher prednisone infusions for a week and do a follow-up biopsy to see if the inflammation has decreased. If that doesn’t work they will do the much more aggressive ATG infusions in the hospital to knock this out.

The prednisone treatment is like bringing a bazooka to a gunfight. The ATG is like bringing a nuclear bomb to a gunfight. All this has to be approved by Kaiser, since we are at the end of the 3 month approved treatment cycle with Scripps.

All that to say, we don’t know for sure what is happening next. Still clear as mud.

I can’t lie, all this hit me pretty hard yesterday, when I heard the initial news. Felt surrounded by a dark, dark, cloud. Talked to my pastor, worked in the yard, and listened to worship music – good therapy. Better therapy is remembering Jesus’ words, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.” Not always easy to live inside those words, but I’m trying.

I’ll let you know what the next steps are. Stay tuned…

Biopsy results

Just talked to my doctor about the biopsy results. He confirmed that the kidney has less inflammation but is not out of the woods yet; also my immune system is attacking the transplanted artery, which shows inflammation in the lining. He will bring the results to their weekly committee meeting of surgeons and nephrologists Monday to get a consensus on treatment. He said they may suggest a very aggressive treatment with ATG infusions. This will require me to check in to the hospital for a couple days, and recover at home a couple days.

He said in the past they didn’t concern themselves with the artery, but have found it dramatically reduces long-term graft survival if not treated. So I will know more probably Tuesday morning.

Update

Yesterday was the 8-week mark since kidney transplant.

First, and most important, I have the follow-up kidney biopsy this Monday. The results will tell us if the steroid treatment did any good to bring down the inflammation. I should get the results by the end of next week. That’s the next time you’ll hear from me. At my appointment this morning, the doctor laid out possible treatments for the different possible results. <Deep breath>

Next, I got my drain out last Friday – FREE AT LAST! That was a loooong month wrestling with that thing – glad it’s gone.

Still feeling the effects of the steroid – jittery, sleeplessness, weak legs, and a very frustrating mental slowness, etc. Not fun.

Your thoughts and prayers are appreciated for next week’s test. Trying to remember the truth: Worrying about the future only keeps you from enjoying the present. Can I get an amen???

A bigger bump in the road.

If you remember my update from last Friday, I said we’ll have to wait and see the results of the biopsy. Well, the results are in and they’re not good. There is inflammation in the kidney. My doctor says that it could be possible early signs of rejection or just a response to medications. It’s mild enough that we could ignore it and hope it goes away and sometimes it does. However, they prefer a more aggressive treatment with high doses of prednisone. That’s right, prednisone. So … déjà vu  all over again.

Monday I started the first of five infusions. Not as bad as the ones I had two years ago, which was 3000 milligrams; this session is only 1550 milligrams. But I’m already feeling the side effects – sleeplessness, swelling/moon face, sore limbs, fatigue. Pretty brutal and will only get worse. Saturday I’ll start a 5-week oral prednisone regimen and will then get another biopsy to see how the kidney has responded.

The difference between 2 years ago is that this time the steroid is being used for healing, which if you’ve ever used it before, it does a very good job, especially with inflammations. The doctors say that experience shows the chance of success is very, very high to save the kidney. So onward and forward and we’ll do our best.

Regardless, I am a blest man, more than I deserve. God’s perpetual presence brings comfort and motivation…

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ONE MONTH!

Today is one month since my kidney transplant!

Spent a loooong 8 hours at the hospital yesterday. Good news/bad news:

Good: One month is a critical juncture in the process. Percentages of success increase dramatically now. The docs are all pumped with my new kidney – great labs, operating strong, good all around. Restrictions will slowly start to be lifted on me. We’ll see what the results of this week’s biopsy is.

Recovering well from Tuesday’s outpatient surgery. Got two new incisions so a lot of pain with that, until late yesterday. Much better this morning. And loving not having to mess with my dialysis catheter. That part of my life is behind me!

Bad: When checked yesterday my wound vac/drain is not in the best position anymore to drain the fluid. So Monday I’ll go back in for repositioning or adding a 2nd drain. That’s 4 times under anesthesia in a month – I see it as a chance to catch up on lost sleep.

Thanks for the love and support!

Back In

12651326_10153330919288016_949053269386896353_nBack in for outpatient, routine surgery, 4 weeks post-transplant. Remove stent and my dialysis catheter, the last vestige of dialysis. Plus a biopsy of the new kidney. Cya on the other side!

Follow-up: Surgery was successful. I got 2 new incisions so a lotta pain. Just took some Norco. Very tired..