From my wife Stacy’s Facebook post:
Mike is back at Kaiser Permanente Zion starting a week of prednisone infusions. The journey continues. Prayers are appreciated.
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!!
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…
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.
No I am NOT pregnant. The photo is actually of my certified, pre-owned kidney (brought to you by Glenn Millar; made possible by Emory Fuqua). I took this from the ultrasound used at Monday’s biopsy.
Was informed that the biopsy did not get a sufficient sample, so we’re doing it again! Oh boy. Apparently the muscles in that area kept the 14-inch needle from getting close to get deeper in the kidney. (Definitely the first time I’ve been accused of having too much muscle.)
So we’re doing it again next Thursday. Bummed about delaying the diagnosis of the state of the kidney. But Stacy reminded me that maybe it needed an extra week to get better. Yeah, I’ll go with that.
I remember teaching a Bible study in my 20’s talking about how Rest/Trust/Wait are the hardest things to do in my spiritual walk. Certainly no easier 30 years later. So let’s just say I’m getting to exercise those muscles through this journey.
Overall, definitely feeling relief from the effects from the higher doses of prednisone last month. Still on daily low dose, and that comes with its own effects, but not as bad. Finally having the energy to walk more and work in the yard has been good for me.
Thanks to all for your love and support!
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???
Folks have been asking how I’m doing. It feels kinda like slowly rotating out of the dark side of the moon. (How’s that for dramatics?)
Last week was tough with the side effects from the prednisone infusions. But Sunday evening I started feeling some relief, and a bit more each day. Yesterday was the first day I felt like walking in the yard in a week. (And at 88 degrees!)
From here on it’s low-dose oral prednisone for about a month. At that point I’ll have another biopsy of the kidney to see how it’s responded to the treatment. Here’s hopin’!
A friend sent me this the other day, and I love it!
“I don’t know how my story will end, but nowhere in my text will it ever read …
‘I gave up.'”
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…
Here’s part of my new normal…I call it my New Kidney Insurance – all of this ensures my body won’t reject my certified, pre-owned kidney from Glenn. The process started with three 10-hour infusions of ATG, which killed all the white blood cells in my body – translation no immune system. Slowly they will allow my immune system to regenerate over the next few months, but will always be suppressed to some degree my whole life.
My new lifelong best friend…Cellcept is the primary immune suppresor that will try to keep my body from rejecting the new kidney. I’ll be carpet-bombed with this for the first 6 months, then a lower dose the rest of my life.
The BIGGEST change for me post-transplant is becoming a Germophobe – something I have NEVER been! Gonna be a hard transition. The transplant team will spend a lot of time training us at the end of my hospital stay this week.
So if we encounter each other in the future, and you have the sniffles or a cough, and I say hi from a distance, please don’t be offended.
Yesterday I shared the link to the magazine article about my health journey. What gets kinda lost in the online version is a sidebar that lists my most important recommendations for someone who has chronic illness:
I have some friends who own an inspirational lifestyle magazine called Refreshed San Diego and have been following my health journey. A few weeks ago they asked if their editor could interview me about this journey. I said sure, why not?
The issue came out yesterday, but I had NO idea I’d be on the cover! (I was always hoping for Rolling Stone, but this will do.) I thought I’d share it with you, in case you’re interested.
It’s been a few months since my last update and folks have been asking how I’m doing, so here we go…still on track for a kidney transplant, though it’ll be a few years away. Just did a whole raft of labs last week, but I can’t understand the results. I don’t see my kidney doctor for 3 weeks and we’ll see where I am at that point, plus start the process for the transplant.
I completely stopped taking the steroid a little over 6 weeks ago. YESSSS!!! It’s been really rough as my body reacts to not getting that crap anymore. I’ve been more tired than I’ve been all year. Multiple naps a day have been the norm. My nutritionist put it this way: “You owed your body a lot after those 6 months on Prednisone, and now you’re paying it back with the sleep it needs to recover.” Sounds reasonable. This week has been a turning point, needing fewer naps/sleep. Hopefully turning a corner.
Plus, there have been many other slow improvements: Sleep is much better, swelling in my face has gone down, eyesight is better, and other improvements. But swelling in my feet and legs is still severe, with no sign of improvement.
Continuing the nutrition path as well – eating better (smarter?) than I have in my life. Hoping to be in a better place with my overall health as well through these changes.
Just SO glad that I’m not putting the steroid and all the related drugs in me anymore. And I’m glad for the prayers, thoughts, well-wishes, concern, and overall support.
P.S. If you happen to see my glorious wife Stacy, please give her a HUGE hug, as she has been my rock through this, sacrificing much to help me through it. I am so blessed…
Buh-bye Mr. Prednisone! Last dose today. Good riddance!!