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!
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!
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…
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.
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.
My angel kidney donor, Emmoree KF, was just laid off from her job – one of 50 people. She is not just a sacrificial, amazing person, but sharp as a tack and great at what she does: Events and event marketing. She lives in the Bay Area, so if anyone up there knows of any opportunities, please pass it on to her or me and I’ll get it to her. Thanks!
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!
O Lord, how can I fret when you walk with me?
My mind is small, confined, tunnel-visioned.
The things of Earth grow strangely bright,
instead of dim.
I envy the lillies, which toil not.
[Hard to imagine a toil-free existence.]
Worry is threaded through my DNA.
Trying to remember a point in life when worries added a single moment to my life.
And yet I cling to it, like an addict.
Just one more hit … like it does me good.
Soloman said, “So refuse to worry, and keep your body healthy.”
Sounds like a relevant goal.
Jesus said,”That is why I tell you not to worry about everyday life.”
Today’s trouble is enough for today.”
Today I will choose to breathe surrender.
A daily – no hourly; nay, minutely – decision.
Things above over things below.
Yes to St. Paul, who said, “Don’t worry about anything…tell God what you need, and thank him for all he has done.”
– Mike Atkinson
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???