so nervous about creatinine level!!

[lou]

I honestly think you are the only guys who really understand how I feel today. I am 3 weeks now since my transplant and having bloods taken Mon/wed/Fri. On dialysis my creatinine was 630 (sorry I'm not sure the American conversion... think its something like 6.3?). well it started going down until it got to 180. then it jumped around for a few days, 160, 180, 160......

Anyway last Fri it was 131 and I was feeling really excited. On Monday it went up to 133 and wed 138. Just had blood taken this morn and absolutely sh*tting myself it will have gone up again and that will mean biopsy...  I know its normal for this to happen and I know rejection is quite normal too, but I just feel soooo worried. Does it get easier? I am sooooo grateful that I got the call and had the transplant but I just cant stop worrying about how its doing now. 

Thanks for listening x x

[Joe Paul]

Give it time, could be your adding stress the kidney cant handle. Think positive, if your going to think about your kidney, it will do fine for you 

[monrein]

Lou, I have lived your worry and know how dreadful it feels.  However, it's still very early days and your numbers aren't horrific although I definitely understand your wanting them as low as possible.  Creatinine can fluctuate around quite a bit, without being a rejection episode but all of us transplanted ones fret about that next lab result and the dreaded biopsy.  But here's the thing...worry means nothing to creatinine, they just don't communicate well at all and worry causes stress which does communicate with the rest of your body which, let's face it, has been through the wars in the past month. 
I don't know what this morning's labs will show but the key is to know and then act on that information.  It is very emotional,  this roller  coaster and I've got everything possible crossed that you will be relieved of some worry this morning.  Please let us know what happens and we'll be here to cheer or to hold your hand.  You could ask if there are any alternatives to biopsy but I know that they are anxious to know exactly what's going on.  My question about biopsy always is..."Will the results of the biopsy mean a change in treatment plan?  If yes, OK, do it...if no, let's pass."  However, in this case, I'm pretty confident that it will mean a change in the dosage of anti-rejection meds and so it becomes a necessary evil.
Lou, I'm older than you and been at this a while, so I've learned (and it's been a steep learning curve too) not to start worrying until I hear really bad things.  I follow all orders, do all tests, am religious about my meds and my diet, keep on top of my end of taking care of myself and feel concern of course but experience has shown me that worry is futile.  I so wish you weren't dealing with this junk and I'll be with you in spirit all day today.   
P.S.  The roller coaster does suck, even when you get somewhat used to it.

[lou]

Thanks Joe Paul and Monrein, I guess I'm still getting my head round the fact my life will always involve worry about my health. I will try and just relax until I actually know anything - I know worry doesn't change anything does it?

Monrein - your message really touched me and actually made me cry (and I really don't cry often!) so thanks for sharing that with me. Will let you know what the dreaded bloods show when I find out later today. x x

[jbeany]

My creatinine took a long time to stabilize.  It was 2.8 for weeks (although major complications didn't help any) before it finally showed any real improvement.  It's been stable now for months, and holding steady at a lovely .9, which is about as good as it can get.  None of that was an actual rejection episode.  So hang in there, and try to remain calm and positive. (Or get a punching bag - whatever works for you!)

[st789]

Thanks for sharing!  Have a positive mental state and stay calm.

[Romona]

Keep yourself hydrated. The drugs may have something to do with it. It takes awhile to get a stable level in your system. Your anti rejection drugs might be a little high.  My creatinine ranges anywhere from .9 to 1.6. I am not sure what that would convert to. It is tough not to worry. 

[MooseMom]

I don't have a transplant, but I certainly understand the extreme anxiety that comes with getting lab results, especially when the stakes are so high.  But I think that as time goes on, it becomes easier to wrap your head around it all.  Learning to live with a chronic health condition is not easy, especially for someone as young as you.  You will become more confident, and you will get a better grasp on what is "normal" for you.  You will learn what is worth worrying about and what is not.  But until it all becomes second nature, you have IHD to listen to your fears, and that is no small thing.

[lou]

Thanks again everyone. Well after worrying myself sick all day I finally rang and creatinine has gone down to 125! 

I know I can't keep obsessing over this number or I will drive myself slowly insane so I'm really gonna try and take all this advise and just chill and only worry if I'm told I have something to worry about!

Thanks again, I really love having all you guys to talk to - your the best! x x 

[monrein]

That's great news lou!  Now, instead of worrying about that number, focus on drinking lots and lots of water.  I try for three liters a day...feels like a full time job some days.   

[Romona]

I'm glad it is good news! At first your life revolves around test results and clinic visits. After awhile it wouldn't rule your life as much.

[MooseMom]

Fabulous news!  Oh, I am so happy for you!

[jennyc]

hey lou, going through the same thing now. Mine has stopped at roughly 150 but it goes up and down between 150 - 180. I know tomorrow i'll hit 175 at least because i had korean BBQ for lunch and that is just a total protein fest. i also know my phos will be up a little cause i've had a huge milkshake today.

It does fluctuate a bit but only within that 20-30 point range (150 is about 7.1 in US terms). Also your tac levels will affect it as well. Good luck and don't stress too much. Talk to the kidney and tell it to relax, works for me

[Joe Paul]

So good to hear the update, and I am glad for you.

[Chris]

Been there lou, but as time goes by you will get use to the slight fluctuations and realize when something is amiss with higher levels, such as dehydration.
 
The only time mine gets way lower than my normal is when I am in the hospital and on IV fluids, but then again I hate urinating that much too

[coravh]

The good news is that you will relax with time. While on dialysis my creatinine was usually between 800 and 900. My kidney was damaged when removed from my cousin, but by 24 hours out I was down to 225. It's the "little kidney that could". For the first year or so my baseline was about 140. The numbers do tend to fluctuate. I am now almost 8 years out and my baseline ranges from month to month between 160 and 180. It has crept up a bit, but I am no longer obsessed/worried. I'm sure it will keep working for a long time to come (knock on wood). Best of luck to you.

I was also nervous when I started having fewer labs. What happens if something happens between blood tests? I relaxed about that too. The first year is the hardest and then you will loosen up and just enjoy. That first cold/infection will also scare the pants off you, but you will get through just fine.

Best of luck and keep hydrated.

Cora