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.

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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..

 

 

Update

Things have turned a corner. Here’s the rundown:

The drain put in last Friday worked well for a day, then I found myself in Urgent Care 3:00 Sunday morning due to severe pain. Bottom line: The drain is still working to get out the excess fluid and will continue to diminish until everything heals up in there and stops leaking fluid (mostly from the lymph system). Yesterday was the best day I’ve had in a while – MUCH less pain, easier to get around – and with no pain killers! Feel good this morning, too.

Surgeon says of all the problems, this is the best to have. It’s common, and the new kidney is still doing great. They’re not worried about it, which is of course the most important element of my recovery.

Yesterday was 3 weeks since transplant, and at 4 weeks I’ll have outpatient surgery to get the stent out, take out my dialysis catheter, and do the first biopsy of the kidney.

Thanks for all the nice notes and texts asking how things are going. We appreciate the support!

Perspective

First, thank you for ALL the amazing birthday wishes yesterday. I didn’t have time to go through them all, but I will today.

I’m not gonna lie…this week has been a challenge. Alotta pain. It started Sunday in the transplant site and got worse throughout the week. On Thursday the surgeon ordered an emergency ultrasound, which found significant fluid build-up near the new kidney.

An urgent procedure was scheduled to have a drain inserted to get that fluid out before it compromised the kidney by pushing it out of place. So yesterday afternoon they knocked me out and the interventional radiologist did the deed. The drain will stay in a few days until they feel it’s completed the process. This has already reduced the pain significantly., just learning to juggle the drain bag when I’m moving. Hopefully Monday they will have results from tests on the fluid.

Also, on Thursday I pulled the muscles in my right side. That has been excruciating pain. The doc says that’s common as they have to cut some muscles in the transplant surgery, which puts pressure on others muscles that aren’t used to being used for certain activities. It’s slowly healing and feels a little better today.

The good news is that the REALLY important stuff is all good – my new kidney function is solid, no signs of rejection, labs all look good. That’s what really matters, so I’m considering this a minor setback on the road to success!

I actually started to get whiney about having to do all this on my birthday, then my son Jeremy said, “How cool that they’re saving your kidney on your birthday!”

Perspective regained.

Transplant Buddy

Meet Heather Kantor, my transplant buddy. She was the first recipient in the kidney chain I was honored to be part of. Her donor, Glenn, wasn’t a match with her (like Emory wasn’t for me), so I got his kidney. And, of course, neither of us would have a new kidney if not for Breelynn, the altruistic donor who kicked off this amazing story. Heather’s final check up with Scripps coincided with my appointment today so we met for lunch to catch up before she moves back east. Feeling blest that I not only gained a new kidney but dear new friends as well…

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One More Squeeze

One last squeeze with my angel donor Emory yesterday before she headed home to San Jose. After her post-op appointment, she and her mom Karen came over for lunch. So how do you say thanks to someone who saved your life? It is quite the challenge. Not sure if I can ever fully accomplish that. So, for now, I love you.

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