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.

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

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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)

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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Finally…some good news

I’ve been coming out of my steroid haze the last couple of days from last week’s infusions. A few rough days, but it ain’t my first rodeo – expected, but still no fun.

The good news is that with some adjustments made by my renal pharmacist, my immunosuppresent levels are now where they should be. We’ve struggled with that since I’ve started taking them. This means better absorption, which could help keep down any further rejection symptoms.

I’m fully transferred back to Kaiser from Scripps, and met with my Kaiser nephrologist this week. She was VERY encouraging and felt that life will get back to normal very soon for me. It was nice to get some good news.

My follow-up biopsy is scheduled for April 28, with results a week later. If there are no signs of rejection, then I’m clear for a few months until the next routine biopsy. If there are signs, they will determine the next treatment.

All that to say, you shouldn’t see another update from me for a few weeks. (Lucky you.) For now, as I continue to strengthen from the diminished prednisone dosages, I will slowly return to working at the office next week and start experiencing some more – desperately needed – normalcy.

Thank you for your continued concern and support!

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…

I’m sorry.

I want to apologize to trees everywhere for my kidney transplant. This is only what I’ve received from Kaiser SO FAR listing charges from Scripps (head spinning) and what amount they’ll allow. And now I’m starting to get the bills from Scripps. Our postman actually told us we needed to get a larger mailbox.

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