The liver is misbehaving, she is. The lab numbers were triple and this is putting Quinn’s transplant in a little bit of a holding pattern because the kidney team needs clearance from the liver team for transplant.
Quinn’s liver doc called late Friday to tell me that she wanted to put her back on Actigal. She’d taken the kids off of it in December because she’d said there was research that showed it wasn’t all the helpful and in some rare cases it could hurt the liver. But when Quinn was on it, her liver numbers were stable. By “stable” I mean they were high, but they were normal high. Quinn’s high. Slightly fluctuating week to week.
She said there might just be some “sludge” caught in the liver and “let’s just make everyone happy” and put her back on it to get the numbers down. So that is what we are doing.
We are also going to have a liver ultrasound in the next few days to just have a look-see. Maybe something will come of that, maybe it won’t.
I’m not very worried about this development even though it slows us down because Gage and Quinn have always had stable liver function and the doctors said failing livers were well in their futures. I suspect it was either a fluke of the lab (unlikely though) or that the Actigal really did help her and we’ll see a decrease in numbers soon (couple of weeks?).
This is just one of the things that come up. The unexpected. The one situation that makes you have to go slower with the plan. I can’t say I’m surprised. I can’t even say I’m freaked out.
And that really just speaks to how trained we are not to get our hopes up to a level where you fall hard. I suggest you do the same. Let’s all just chill while we wait.
Cause waiting? That we have and can do.

Ok, I will follow your example and chill. Now I’m glad you put LA aside because, sheesh, you have enough on your plate without PACKING. That’s what I think anyway. Sheesh again. Bad liver! Bad! Bad!
I am thinking about you. So very sorry there are so many extra hurdles for Quinn to get through.
Hugs,
Jen
Hi Julia,
You’re an inspiration. Really. Patience is indeed a virtue. Prayers and blessings for you and your family. We’ve been waiting too. We call it cautious optimism. Trying to keep the rollercoaster on some sort of horizontal slope.
Peace, Ilishe
Sorry to hear about Quinn’s liver numbers. My Jen has been on actigall since her 2nd liver transplant. Although livers and kidneys are very different when it comes to transplant, I just thought I’d say that Jen’s on the actigall to keep things “flowing well.” It works well for her and I’m hoping it will do the same for Quinn. I rarely post but do come here to keep up with your two often.
Oh boy…..you do sound so calm and that is truly amazing! But like you said, you have had practice to get to this…..just wish you didn’t have another challenge in front of you! We continue to think of you guys everyday…….wishing you lots of peace and strength!! And we will stay tuned and keep everything crossed!
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