When I woke up this morning, I didn't think I'd end the day by researching the link between Prograf and creatinine, how to prepare for dialysis and where's the nearest center, yet that's what's happened today.
Around 6:00pm, my doctor at Mayo called with my lab results, and seemed a bit freaked out. Here's why:
My creatinine has jumped from 1.8 to 2.8 in two months. That's a BIG jump. This is a bad jump.
A creatinine of 2.8 lowers my kidney function to an eGFR of 19, which puts me solidly in stage 4 CKD. According to what I read, at an eGFR of 20 you can get put on "THE LIST". Yes people, I'm talking about the UNOS Transplant list.
I'm clearly peeing less and less....another indicator of decreased kidney function. Did you know that lots of dialysis patients don't pee? Won't that just be WEIRD? Okay, the ONLY upside is no need to use those ultra-creepy restrooms at gas stations :)
My protein loss hasn't changed much...still hovering around 12000 mgrams. A normal person averages less than 150.
And clearly, based off of this following graph, I'm having some electrolyte issues.
The funny thing is, I feel pretty OK. I think I got a definite boost from the albumin infusions (still minimal swelling, and I've spent A LOT of time in a car this week).
So the plan is to stop taking Prograf/tacrolimus (which is great because it gives me the shakes) and bactrim (which is also great because it causes thrush) immediately, and then do another blood creatinine test on Monday when I get my INR checked.
I seriously don't know what to think. I think I'm in shock. I know I'm happy for happy pills, 'cause if it weren't for them, I fear I'd be a babbling mess. This is where it's good to be numb.
Wish me luck folks, this journey's about to get bumpy.
What is your prograf level? Mine creatinine jumps when my level gets too high. Also, bactrim is hard on the kidneys, kind of surprised you were on it to begin with. I have great kidney function with this transplant and they wont let me take bactrim. Glad they are taking you off of both of them!
ReplyDeleteHydrate and update us after you get labs checked again.
Sarah
It hovers around 5....I've been put on bactrim every time I go on immunosuppresants....you don't?
DeleteIm on bactrim too...haven't heard its bad on the kidneys
DeleteI wasn't put on it. My transplant coordinator said no, because it is hard on the kidney. The pharmacist said it wasn't also, so who knows! I figured my transplant center would know best, since they are all kidneys all of the time.
Delete(This is not a family blog, right? If it is, please ignore the following....)
ReplyDeleteFUUUUUUUCCCCCCKKKKKKK!!
I am hopeful that at this point you have told your boss what is going on, you are clearly at a point of needing time off. Anything we can do from here to support you? I've been meaning to ask for your address so we can send you our Christmas Card - email me!
(And I'm watching SNL from last week - the skit that just came on is appropriate - What Up With THAT?!)
I did tell him last week. I kept the info to a minimum, but he responded in exactly the way I needed, so all is well on that front. I'm going to keep working as long as I physically can....it's the only place where I don't feel "sick", you know what I mean?
DeleteJen-
ReplyDeleteI stumbled on your blog when I was first diagnosed with FSGS. it has helped so much with the motional side of all of this. I just wanted you to know how much this blog means to some people and that we do care. I hope for the best for you.
Thanks so much, xxsamibaby :) It always hits me hard (in a good way) when people comment here, especially when they say that I've helped. That's always my goal.....to not feel so alone in this. And because of this blog and Facebook, I feel lots o' kidney love :)
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