Creatine is 1.51 really worried had transplant in 2001 its been 20 years

[jennifer24]

Hi everyone hope everyone is doing well i have a question I had my kidney transplant in 2001 and I always been stable 4 years to now my creatine has been up and down im really concern im thinking that I don't have much time with my kidney do u guys think I should be concern that my creatine is now 1.51 and also what do u guys recommend for me to know for it to go back down I eat veggies fruits and dont eat red meat I would really appreciate ur recommendations and advice 💚💫

[SOct91]

Hi Jennifer! I’ve had my transplant 29 years and my creatinine averages around 1.5. I think it used to average lower probably around 1.3. One lab it got up to 1.9 and I freaked! They told me to hydrate and redo them and it was down to 1.6. Creatinine can fluctuate based on many things. While I’m curious what others say, my doctor basically told me unless I’m being really good about hydration and it’s still creeping up repeatedly not to worry.

Also, I’m only on cellcept now and do not have a restricted diet, even salt since I have low blood pressure. I just try to eat mainly healthy and exercise and hydrate hydrate hydrate!

[jennifer24 in reply to SOct91]

Ook u calm me down a little thanks for ur advice

[limloonglu]

You can eat less meat and take Ketosteril tablets to substitute your amino acid

[jennifer24 in reply to limloonglu]

Thankz

[WYOAnne NKF Ambassador in reply to jennifer24]

I am 21+ years post transplant from a deceased donor. Don't start worrying before you have to. The main thing is to take your meds, eat heart healthy, and make sure you stay hydrated. I have found that staying hydrated is the most important for me. My nephrologist had told me when my creatinine was jumping around, that this new creatinine value could be my new normal.What meds are you on? I still continue to take Neoral (cyclosporine) and Myfortic (cellcept).

[jennifer24 in reply to WYOAnne]

Cellcept prograff Norvasc potassium citrate magnesium

[Kingmoha in reply to WYOAnne]

Hi How was ur creatinine first time after transplant ? I have my kidney transplant 5 months from DC donor my creatinine is 116

[jennifer24 in reply to Kingmoha]

Well I dont remember I was 13 when I had my transplant now I'm 32 going to 33 this year . Anyways good luck with kidney and God bless ook drink lots of water ook .....

[WYOAnne NKF Ambassador in reply to Kingmoha]

I also had a deceased donor. That first year my creatinine had highs and lows. I remember it was really effected by my hydration. 2-3 times my new kidney had a biopsy since my creatinine had jumped up. Now, and for the last 20 years, my creatinine has been stable at 0.9 - 1.0

[Kingmoha in reply to WYOAnne]

My creatinine jumped up and down 116 to 128 and last week it jumped 122 to 142 😢 and to day it was 146 . I dont know it Will be my normal creatinine . 6 months post transplant

[Kingmoha in reply to limloonglu]

You mean all animal meata or red meat thanks for answering

[jennifer24 in reply to Kingmoha]

Red meat

[WYOAnne NKF Ambassador in reply to jennifer24]

The whole idea after you have had a transplant is that you don't have to follow the strict diet you did before. My transplant team told me to continue to follow a low salt diet. I could and have eaten red meat at least one or twice a week. My cholesterol remains normal.Did your team give you any diet restrictions after your transplant?

[jennifer24 in reply to WYOAnne]

No

[KatieJohnston]

Drink at least 2-3 Liters of water a day just plain water I mean you can have flavored water that you make like with fresh fruit. As long as you get 2-3 liters a day. Good luck to you and let me know

[jennifer24 in reply to KatieJohnston]

Thankz

[Randy1805]

Hi Jennifer I've had my transplant for 9 years now. My creatinine is 1.9 been like this for two years I think this is my normal don't worry that might be your new normal just keep going on

[jennifer24 in reply to Randy1805]

Thank u

[WYOAnne NKF Ambassador in reply to jennifer24]

If this were me, I would be scared to death!!! I would be insisting on seeing my nephrologist ASAP , if that who is charge of your kidney care. I would also be asking to repeat your renal labs. How often are your labs ordered? What was your creatinine baseline before the 1.5 ?I would want ANSWERS NOW!!!!!!!!!!!!!!!!!!

Thinking of you! Prayers...

[jennifer24 in reply to WYOAnne]

1.2 to 1.3

[jennifer24 in reply to jennifer24]

Oh and on top of that my protein is a little high too when it when to 1.5

[WYOAnne NKF Ambassador in reply to jennifer24]

Whenever my creatinine jumped up 0.3 or more from my normal, I had a biopsy of my new kidney/transplant. I would sure be asking what is going on after all this time. I am 21+ years out and my nephrologist says that it is rare that I would reject this far out. It is rare...unless it is YOU! RIGHT? Maybe it is lab error, or a fluke?

[jennifer24 in reply to WYOAnne]

They did told me years ago that it will slowly eventually happen its been 20 years the creatine is not going to stay the same and true it will not be rejecting after so long its that the kidney as years pass its capacity to work will gradually slow down remember unfortunately our transplant kidneys dont last forever we r lucky that ours are still working btw wats ur creatine level now???

[WYOAnne NKF Ambassador in reply to jennifer24]

I was diagnosed with FSGS and that eventually my transplant would also get the disease. No sign so far. Maybe because I am older than you....I would be fighting like HELL!

[Borg_Implants]

20 years in here, from a donor. Stay hydrated (use electrolytes), watch your protein intake, HIIT, be weary of exotic supplements, eat organic, do not allow depression (or any mental instabilities take hold) so you can stay clear and focused.I worry a lot about my Creat /BUN rising so I do everything in my power to keep well. I have people who love me, who need me to stick around.

Hope this helps.

[Vonkeithproperties]

My base line for a while was in that range ... my doctors have me on a monthly infusion o belaticept (so?) I’ve been 3.9- now about 4.5 -5 . Is your dr. Worried? Make sure you have a good dr with good communication skills I had to dump my first nephrologist snd find a new one I’m not a dr. Btw.. just sharing my experience 👍🏼