Friday, March 6, 2009

Creeping Creatinine

I'm sorry I've been MIA the past couple of days. I've so missed out on my fellow blogger's lives. It's been a tough couple of days emotionally and physically, but I'm feeling better today. :)

Ok, so I went to the kidney transplant clinic on Wednesday. It seems that my creatinine is slowly creeping upward. I'll be honest, I'm not really sure what this means, other than my kidney isn't functioning as well as it was in December. It has gone from 0.5 to 1.2. I'm also not sure what the docs are going to do about it, if anything. My transplant coordinator called me today to tell me about it, and said that she has yet to talk to a doctor about it. She has several of them paged, but hasn't heard back from them yet. I've done the dangerous thing and read on the internet that a "creeping creatinine" can mean chronic rejection, but I personally don't think that's what is going on, so I'll just wait to hear back from my nurse.

I am also back to having the nausea that I had prior to kidney transplant. I am convinced now that this is due to the anti-rejection med called Cellcept that I'm taking. I believe that the high doses of prednisone (that make you so hungry you would eat the kitchen sink if there were nothing else in site) were masking this nausea. Now that I'm down to a low dose, it has come back. I'm still eating, but find it a struggle. Yesterday, I had to break down and take a phenergan, which always knocks me out. I see my lung transplant pulmonologist in late March. He is the one who would lower the dose of Cellcept if that's possible. I was put on it, because he thought I was having some chronic rejection of my lungs almost 2 years ago. It did bring my lung function back up, so I know it's working. I would hate to stop it, or lower the dose and have my numbers drop again.

On a different note... I finished my photography class. I take the final exam today after I do some much needed reviewing. I finally got my photoshop/Creative Suite 4 activated yesterday and started playing around with it last night. I have a ton of tutorials to watch. I also start my next photography class on the 18th. I'm really starting to love all of this. I just can't get enough!!

Casey is at her dad's this weekend. I'm not really sure what Jason and I are going to be doing except make a trip to the health food store. It is only about 20 minutes away from here, but we just can't seem to make time to go there. I have a whole shopping list, so we can try to stock up this weekend. They have a lot of low sodium, or sodium-free foods that I just can't find anywhere else.

I'll keep you updated on my kidney :), and I hope all of you have a great weekend.

13 comments:

Hope said...

I don't know if anything I say will help or not, but I do have a history of kidney issues since I've had cancer in my kidney (which was removed) I want to help. I've had many high creatinine levels, which were caught by blood tests and 24 hr urine. I've never known an exact reason for it. My Oncologist/hematologist has theories but ....... It comes and it goes sporadically. My kidney wasn't damaged by this. Kidneys are forgiving organs. Please don't worry about this until you have a reason to (which hopefully doesn't happen!)

I'm sure you know this, but I've heard dehydration effects creatinine.

((Hugs)) to you! Have a great weekend and feel better fast:)

Carrie said...

Doesn't that drive you crazy when they tell you something and you have to wait to find out what it means??

I always look stuff up on the internet and usually end up terrifying myself for no reason!!

We are praying for you!!

Heidi said...

What are we going to do with you! When you say chronic rejection, would that be of the kidney?? Just curious. I pray that it 'CREEPS' back down to where it belongs. Keep us posted!

OceanDesert said...

Thinking about you, Christy! I have only ever been on Cellcept and Prograf.. haven't experienced nausea, but everyone is different of course.. What anti-rejection med were you on before the switch?

You photo class sounds FUN! Can't wait to see more of your work!

I also love going to the health food store (does Whole Foods count as one?) They have the best stuff! I could look forever in there!

Aspiemom said...

I'm so sorry that you're having these problems. It's one thing after another!

Can't wait to see more pictures!

Christy said...

Yes Heidi, that would mean the kidney, but I really don't think it's that. I mean they told me that the more organs I receive, the less likely it is of rejection, and I have my mom's lobe too. I think it's something else.

Sara, I was only on Prograf and Prednisone prior to starting Cellcept. I think I was on Imuran for about 6 months post lung transplant, but not since. What dose of Cellcept are you on? I'm on 1000 mg twice a day.. the standard dose I think???

LJ said...

I will be praying for you...and thinking positive thoughts in the meantime. Hopefully it will creep back to normal!! I was dehydrated on Wed and the doc said that indeed was why my creatine was out of wack. Were you a little dehydrated did you say? OK...Enjoy your weekend, I love and miss you:)

Katelyn said...

I'm thinking of you and praying that you feel better very quickly. All of us are breaking down and I blame it on the weather. Even though, we don't live near the same place, let's blame it on that.

steveroni said...

Well Christy, I'm "normal". HA! THAT'S a damn lie -grin! But...no transplants. Some transformations, though. Trying to be funny, but my heart is not with it.

I'd like to see those "creeping creatues" creep the other direction and I'll "think" along that line...

In love and service,
Steve E.

Heidi said...

I wonder what happened? You already drink a ton of water right? Are you blood sugars good? I'm trying to think of all the stuff they told me the other day about what "other" things (besides the antirejection meds) can cause high creatinine. Keep us posted! Love ya!

Phoenix's Mom said...

Sending thoughts and prayers that you are feeling better soon!
Congrats on your class! I can't wait to see some pics!
Have a great weekend!
Angela

Laryssa said...

Oh, gosh, Christy. I wish things were better for you, too. My doctor is now monitoring my kidneys for increased creatinine also. It is scary when you read about stuff on the internet; after I did that, she told me not to worry about it because she's not worried about it.

So just take a deep breath and leave it in God's hands. Who better to handle it? :) I'll be praying for good news!!

Somer Love said...

I will keep you in my prayers!!! I am sending your kidney positive thoughts too!

Don't ever research anything on the internet it only gives worse case scenario and you will only stress. I have found this out the hard way!

Keep your chin up! Xo