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