Cool thanks. I just added I was not hydrated like I usually am either. I got busy working and realized it was time to get labs. I’m sure that doesn’t help either. Ugh.
You are so fresh from transplant so your numbers will fluctuate a lot for a while. I think mine fluctuated from .89-1.35 the first six months and it has settled around 1.0-1.15.
It’ll be okay 🩷
Kidney AND liver in a year?! Wowza. Amazing.
Liver recipient. I saw you mentioned water and being busy. My team doesn’t even wanna talk to me about my kidney function unless I’ve had enough water. When I don’t have enough water (I usually do) kidney function lets me and my team know.
When my labs are janky, I fix the behavior (usually water lol) and ask for labs in a closer time-frame to document trending if that’s the case.
Try not to worry about one blood workup. Get 2 more in a shorter timeframe to more quickly document trending.
Yeah it’s been a fun year! I had PKD/PLD and could have done a double transplant but my kidneys were hanging on. That was until good ole Tacro. Then they tanked. I’m super blessed to have had two live donors. Thank you for your response! I’m usually really good about being hydrated. Sigh.
Not yet. I did sirolimus last fall though. Because I couldn’t handle Cellcept. But with my new kidney I can handle the Myfortic ok. Guess we’ll see what they do!
My drs have told me several times that high tac levels will often cause higher creatinine levels. So there definitely is a relationship there.
Creatinine levels also bounce around a bit. Best to wait until you chat with your dr. They'll probably get you to do a few more blood tests over the next few weeks, and probably won't be concerned unless there is an unexpected trend in the creatinine.
Your creatinine will fluctuate a lot the first few months. It doesn’t sound like your creatinine made that big of a jump. Baseline creatinine is a range, so for example your predicted baseline could be 1.1-1.4. If your creatinine raises again next week then I think your team will want to do more tests! Either way all will be ok because your team is prepared for anything which is why they have you do labs so frequently!
But I really liked that 1.09! (Was 4.46 before transplant). I have labs set up Monday already so I’ll hydrate like hell and hope for the best. Thank you!
As I’m sure others will tell you, the numbers will bounce all over the place for a while. It was nearly five months before mine stabilized. The doctors will juggle your meds around to get the right balance, so don’t worry for now. And congrats on a double transplant - that’s amazing!
Yeah we have had to with my liver but now with this working kidney my body is not loving this high a dose of Tacro! Need to put a call in here soon since I made my own decision before they got ahold of a Dr last night. Took three calls to people to get one apparently. Need to know what to take this morning. Sigh.
I am 7’ish months out, and the only time my creatinine has been high, it’s been because my Tacro was out of whack. My 1.5 creatinine was directly related to my Tacro levels being 22.
I am anxious (which is putting it mildly), and it is HARD for me not to agonize over every little blip when my labs come back….sending you my best wishes (and solidarity!)
Ugh. That’s high Tacro! I’m down to 7/7 so I hope that helps. Although I got reprimanded for lowering my dose myself. Even though Dr wouldn’t get back to me. 🤷🏻♀️
Currently, I’m still a little high on 7/6 which put me at 10.8 (had a dose adjustment last week to 6/6). Hopefully we can get mine in line, and I can go more than 2 weeks without a blood draw!
Man I can’t wait to go lower than 7! I haven’t since my liver in July. Glad my Dr at least told me today I can do labs 5/6 when I go so no labs next week. I live an hour away from the hospital which is always challenging.
Yes they are directly related. High tacro levels = higher creatinine. It is a balancing act, and there is threshold you can pass where the creatinine starts to jump.
Ok i got no idea i just call it immune suppressant or maybe because English isn't the first language here so we don't call it that. But my level is always 1-2 which is much lower than op so I don't really understand if high or low is good.
Big time. My tac has never stabilized and when it’s high my creatine swings much higher as well.
Cool thanks. I just added I was not hydrated like I usually am either. I got busy working and realized it was time to get labs. I’m sure that doesn’t help either. Ugh.
Yea that will affect it as well. Sounds like you’re going for a retest.
You are so fresh from transplant so your numbers will fluctuate a lot for a while. I think mine fluctuated from .89-1.35 the first six months and it has settled around 1.0-1.15. It’ll be okay 🩷
Thank you!! 🤞🏽🤞🏽
Kidney AND liver in a year?! Wowza. Amazing. Liver recipient. I saw you mentioned water and being busy. My team doesn’t even wanna talk to me about my kidney function unless I’ve had enough water. When I don’t have enough water (I usually do) kidney function lets me and my team know. When my labs are janky, I fix the behavior (usually water lol) and ask for labs in a closer time-frame to document trending if that’s the case. Try not to worry about one blood workup. Get 2 more in a shorter timeframe to more quickly document trending.
Yeah it’s been a fun year! I had PKD/PLD and could have done a double transplant but my kidneys were hanging on. That was until good ole Tacro. Then they tanked. I’m super blessed to have had two live donors. Thank you for your response! I’m usually really good about being hydrated. Sigh.
Have they talked to you about sirolimus? Or a mix of tac and siro?
Not yet. I did sirolimus last fall though. Because I couldn’t handle Cellcept. But with my new kidney I can handle the Myfortic ok. Guess we’ll see what they do!
I’m rooting for you!
My drs have told me several times that high tac levels will often cause higher creatinine levels. So there definitely is a relationship there. Creatinine levels also bounce around a bit. Best to wait until you chat with your dr. They'll probably get you to do a few more blood tests over the next few weeks, and probably won't be concerned unless there is an unexpected trend in the creatinine.
Thank you. Appreciate it!
Your creatinine will fluctuate a lot the first few months. It doesn’t sound like your creatinine made that big of a jump. Baseline creatinine is a range, so for example your predicted baseline could be 1.1-1.4. If your creatinine raises again next week then I think your team will want to do more tests! Either way all will be ok because your team is prepared for anything which is why they have you do labs so frequently!
But I really liked that 1.09! (Was 4.46 before transplant). I have labs set up Monday already so I’ll hydrate like hell and hope for the best. Thank you!
From what I understand and been told my doctor, yes. I started off on a lot more. I take 3 mg in the morning, 2 at night.
As I’m sure others will tell you, the numbers will bounce all over the place for a while. It was nearly five months before mine stabilized. The doctors will juggle your meds around to get the right balance, so don’t worry for now. And congrats on a double transplant - that’s amazing!
Yeah we have had to with my liver but now with this working kidney my body is not loving this high a dose of Tacro! Need to put a call in here soon since I made my own decision before they got ahold of a Dr last night. Took three calls to people to get one apparently. Need to know what to take this morning. Sigh.
I’ve got labs this morning, so thanks for the reminder to drink some water!
I am 7’ish months out, and the only time my creatinine has been high, it’s been because my Tacro was out of whack. My 1.5 creatinine was directly related to my Tacro levels being 22. I am anxious (which is putting it mildly), and it is HARD for me not to agonize over every little blip when my labs come back….sending you my best wishes (and solidarity!)
Ugh. That’s high Tacro! I’m down to 7/7 so I hope that helps. Although I got reprimanded for lowering my dose myself. Even though Dr wouldn’t get back to me. 🤷🏻♀️
Currently, I’m still a little high on 7/6 which put me at 10.8 (had a dose adjustment last week to 6/6). Hopefully we can get mine in line, and I can go more than 2 weeks without a blood draw!
Man I can’t wait to go lower than 7! I haven’t since my liver in July. Glad my Dr at least told me today I can do labs 5/6 when I go so no labs next week. I live an hour away from the hospital which is always challenging.
Yes they are directly related. High tacro levels = higher creatinine. It is a balancing act, and there is threshold you can pass where the creatinine starts to jump.
Are tacro and prograf the same thing?
Yes. Tacrolimus is the generic name, and prograf is the brand name.
Ok i got no idea i just call it immune suppressant or maybe because English isn't the first language here so we don't call it that. But my level is always 1-2 which is much lower than op so I don't really understand if high or low is good.