Jörg drove Annika up to Chicago today for a clinic visit with the liver team, and a repeat of her pulmonary function tests. Anni's lab values continue to hover just on the wrong side of normal, wrong enough that her PELD score to determine her place on the transplant list (determined by lab values used to estimate severity of liver disease) is high enough (8) to make it not exactly impossible to think she might get called, but still incredibly unlikely.
Her lab values haven't really improved any since that first shocking positive turn a few months back. But they also appear to be holding steadily at this new plateau.
I remember hearing a lot about plateaus back when we were first learning about Annika's disease, Biliary Atresia. One of our earlier GIs spent an unexpectedly generous amount of time talking to us, trying to ease our transition into the life of pediatric liver disease. He told us that, while adults with liver disease tend to follow a fairly predictable downward spiral during progressive liver failure, children tended to follow their own, unique course. True, some go downhill at alarming rates. But liver failure for other children could be more like taking a leisurely stroll from the border of western Kansas heading east across the state; the slope is downward, but nothing your calves would notice along the way*. Other kids could appear to be crashing down the mountain of liver disease like young snowboarders, taking out scrub pines and smashing against the nests of burrowing creatures, until one day they suddenly turned into something more like elderly cross-country skiers, patiently swishing away across a snowy field, wondering whether to have cocoa or tea upon return.
When Annika, as a baby, appeared to be taking the Extreme Snowboarder approach to liver disease, this doctor often calmed us by saying that she could simply be headed for the next plateau. And that some kids lived happily cross-country swishing their way across the plateaus of liver disease for years.
We never talked much about her getting better, though. Once she was listed for transplant, it was clear that the only question was "how long?" No one ever talked to us about plateaus along the path to improvement. Even thinking about it brings me to ridiculous diet comparisons, like those last, pesky 10 pounds that you can learn to embrace as a sort of life-tariff, or else allow them to turn you into some sort of obsessive with a clouded perspective, or else take them as a sign of eternal defeat and give up altogether.
I think I'm among the first group (although I'll have to get myself to within those 10 pounds to be really sure. Unfortunately, I appear to be okey-dokey with paying a considerable higher life-tariff than just 10 pounds.) I tend to think that the fact that Annika appears to be pulling steady, not-alarmingly-abnormal lab values could just be a sort of tariff paid for coming through a horrific experience. Maybe "normal" is too much to ask, after all. I could see her continuing along, just like she is right now, for years.
Wherever Annika is headed right now, she's doing too well not to allow some optimism. Heck, even great big barrels full of optimism.
So Annika is going to go back to being a status 7 on the transplant list, meaning she's still listed for transplant (we're not smoking rainbows and yanking her off the list), but she's not currently eligible to receive any offers. The last time Annika was listed as a status 7 was a nailbiting time; she wasn't eligible because her surgeon didn't think she was a good surgical candidate, even though her liver appeared to be in rotten shape. Now she's back at status 7 again, but my nails are looking pretty damned good this time around.
* I made this up, although this is the way western Kansas was always described to me growing up in eastern Kansas. I'm not sure how this fits into the Kansas: Flatter than Pancake study. Also, a quick perusal of the Flat Kansas article just linked will also explain the title of this post.