Hoping for lots of kidney karma tomorrow…

Miracle Weekend fun with mascots

Miracle Weekend fun with mascots

I’m dreading tomorrow’s hospital visit, yet trying to stay positive at the same time. It is an oxymoron but this is the game I play to try and stay sane. We are getting ready for Addison’s GFR test. This is the glomerular filtration rate test which measures kidney function. Last year’s results were so disappointing. I am just hoping we get a teeny bit of good news from tomorrow’s appointment. I would be perfectly fine with a similar number – even if it means Addison technically continues with chronic kidney disease. I would be willing to accept a wee little decline. But of course, I would be overjoyed if that GFR went up at all.

Playing peekaboo with the girls from Lisa's Dance School

Playing peekaboo with the girls from Lisa’s Dance School

IMG_1877

The last nine months have been way too much like an endless game of tennis with Addison’s Tacrolimus levels. Imagine a bouncing ball with a mind of its own chased by a team of cardiologists, nurses, and the McYongs. That is kind of how it feels. The Princess has a dip in those Tac trough numbers, we increase her Tac dose, her kidney numbers go up again, we drop the Tac dose, her kidney numbers go down, but her Tac trough goes down too so we are back to increasing the Tac. I have lost track of how many times we have tweaked the meds to try and please both masters. What’s worse – chronic kidney disease or rejection?? Not really the kind of Russian roulette anyone wants to play.

Addison meets cancer warrior Brooke at Miracle Weekend

Addison meets cancer warrior Brooke at Miracle Weekend

I recognize that symbol!

I recognize that symbol!

Aaron and I have been riding the wave, trying not to think too much about either worst-case scenario. We both feel that with Addison’s track record of zero rejection on both biopsies, we are willing to lower the Tac dose and risk a little rejection to save the kidneys. Decisions will have to be made soon. There is another drug we could try instead of Tac, though mouth ulcers are a nasty side effect. But right now, our medical team is awaiting tomorrow’s results with bated breath. And so are we.

Love,

Elaine, Aaron and Addison

PS It took one solid week of jet lag but Addison’s sleep is now back on track…thankfully!!

8 thoughts on “Hoping for lots of kidney karma tomorrow…

  1. Hoping for the best for you guys with those test result. What a photogenic little girl, I wonder where she gets that from?

  2. our fingers and hearts crossed for a stable GFR, the anticipation can be brutal,and there is always a plan A B C &D for our little hoop jumpers.do today.

  3. Have Princess Addie in my thoughts and sending out positive vibes …. thinking happy thoughts for tomorrow’s test results… hang in there… you guys are amazing and Addie thrives as a result of your incredible parenting …. ❤ and hugs to the McYong clan…

  4. Sending lots of positive kidney karma!!!!!!! Thinking about you!!!!!
    Hope miracle weekend went well. Looks like Addie had a great time!!

  5. Many blessings to you all! Good Kidney Karma! (I like this.It may be our new mantra!) Tristyn’s GFR will be in August.

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