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.

Whew.

BIOPSY ALL CLEAR!!

How I’ve waited to hear those words. Just took the first deep breath in six months.

The doctor said no signs of rejection or inflammation. Thus, no changes to meds and no additional treatments. Next routine biopsy in 6 months.

Just trying to be patient waiting for all the prednisone they pumped into me to dissipate. Hopefully in the next few weeks. Then I should feel 100% (something I haven’t felt in nearly 3 years.)

Hopefully you won’t hear from me again for a loooong time with another Health Update.

Thank you all for your love and support! God is good…

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)

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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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.

Biopsy Update

12788680_10153394874893016_1092241755_oNo 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!

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???

Dark Side of the Moon

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.'”
 
ONWARD!