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TransplantBuddies.org Forums » Kidney - Pancreas Transplant         Join our Kidney Group » Archive through September 05, 2010 » Popular Topics in our Kidney & Pancreas Forum » rising creatinine numbers after transplant - help! « Previous Next »


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mogold
Member
Username: Mogold1

Post Number: 1
Registered: 12-2009
Posted on Monday, December 28, 2009 - 02:25 pm:   Edit Post Delete Post Print Post

I am three weeks post transplant and new to this forum. Right after surgery, my creatinine fell from 4.6 to 1.4. The last week, it has gone from 1.4, 1.7 and today, 1.8. My nephrologist said he is not too concerned but said that if it goes beyond 2.0 I will have to have a biopsy to see if I am rejecting. He sent me home without any change in anti rejection meds.. He said it might be because my calcium level is too high and I am taking a drug called Calcitriol to control it. He told me to stop that drug for now. I go back in a couple of days for more labs. I am terrified that I am rejecting already. I am also terrified of a biopsy since I had one three years ago on my own kidneys. Is it as painful on a transplanted kidney? Has anyone had a rise in numbers like this and then have it go back down or stay at that number and not be in the throes of rejection?
BreathinSteven
Forum Leader
Username: Breathinsteven

Post Number: 1913
Registered: 11-2004
Posted on Monday, December 28, 2009 - 02:58 pm:   Edit Post Delete Post Print Post

Hi mogold!

Welcome to Transplant Buddies -- I'm hoping that someone with more experience in kidneys will chime in here -- I'm a double lung recipient...

How well are you hydrating? I know from experience that my creatinine can swing 0.2 to 0.3 when I'm not properly hydrated -- that could be one of the reasons your nephrologist isn't that concerned... Certain fluctuations are normal as your hydration goes up and down... If you're neph is not too concerned about rejecting -- you should probably try to follow his lead...

As for kidney biopsies -- your new kidney does not have any feeling -- it is "denervated", or not hooked up to your brain via any nerves, so there should not be actual kidney pain during a biopsy... However, they will still be going through tissue that is yours, including tissue that may still be sensitive post surgery -- so I don't know how painful that might be... I know there are several others here who have gone through these experiences who will help... And, I'm sure they will also tell you about fluctuations in their numbers immediately post transplant...

I hope it's nothing -- I hope it levels out a bit lower and you don't have to worry about rejection or biopsies or anything like that...

Love, Steve
Steve
CF, Dbl-Lung Recip April 2000
www.ClimbingForKari.org
www.ReviveHope.com

http://www.youtube.com/SteveFerkau
Meagan
Forum Leader
Username: Newheart14

Post Number: 646
Registered: 01-2009
Posted on Monday, December 28, 2009 - 03:34 pm:   Edit Post Delete Post Print Post

Hello Mogold,

Welcome to Transplant Buddies.

I am not familiar with kidney biopsies but I have had many heart biopsies and a few liver biopsies. They did not hurt me. I am more nervous than anything. I am a heart and liver recipient, and the kidneys were in trouble before transplant, but are doing OK now with a few bumps now and again.

My kidney numbers have been fluctuating a lot this year, but they are not too concerned about it. I always seems to be dehydrated which may be the cause for me, so I am trying to drink more. Are you drinking enough?

If your doctor is cool about it, I would try not to worry about it as stress is not good for you and actually makes things worse.

We have many kidney recipients on the site and I am sure they will pick up on the thread and assist you.

In the meantime, in order for us to easily identify you and your transplant, we have a suggestion for you.

Click on Edit Profile in the light blue box on the home page, up on the left corner of our forums. You will be able to add some information to your Signature for others to see.

After clicking on Edit Profile, type in your username and password. When your page opens up scroll down to where it says signature and type away. You can include anything you want, e.g. your illness, whether you are a donor, donor family member, type of transplant, hospital, where you live, etc. Then click save.

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I hope you enjoy your stay at Transplantbuddies.

Take care,
Meagan
First Combined Heart-Liver Transplant
Performed at Toronto General Hospital, Toronto, Canada
February 14, 2008
http://www.facebook.com/people/Meagan-Casimir/1149907559
http://www.tgwhf.ca/sites/testyourlimits/
Yesterday is history, tomorrow is a mystery, today is a gift, that is why it is called the present.
Swell
Member
Username: Swell

Post Number: 37
Registered: 06-2009
Posted on Monday, December 28, 2009 - 08:12 pm:   Edit Post Delete Post Print Post

Hi Molgold

Congratulations on your transplant. I've had my kidney for 8 months now, and my creatinine went up after I was released from the hospital. It jumped from around 0.8 to 1.5 over the course of 4 weeks, so I had to have a biopsy. It was nothing like the biopsy on my original kidneys, there was no pain for me, it was over quickly, and I had to lie still with a sandbag over the biopsy site for 4 hours. There was no evidence of rejection. I was told to make sure I was well hydrated, and there was some discussion of switching me. from prograf to rapamune, as high doses of prograf (like we are on when we first get transplanted) was causing toxicity.
My creatinine kept inching up - it got to 2.1 within a month, and I had another biopsy - still no evidence of rejection. They started lowering my dose of prograf, and my creatinine started gradually falling - it's at 1.1 now.
I know how worried and upset I was while this was happening, so I totally understand your concerns. Your doctors will monitor you carefully and do what they think is best. Just because they might want to do a biopsy doesn't necessarily mean you are rejecting. Keep your spirits up and think positive. Sometimes it takes awhile for everything to settle down.
Please let us know how things are going. You will be my prayers.
FSGS ESRD 12/08
Kidney transplant 4/09
Medical College of Georgia Augusta, Ga.
Kidney donated by my wonderful husband!
JW
Member
Username: Jjw12562

Post Number: 4
Registered: 12-2009
Posted on Monday, December 28, 2009 - 11:21 pm:   Edit Post Delete Post Print Post

Hi. I had the same thing happen, probably a few months after my kidney transplant. I, too, was worried -- needlessly so, as it turns out.
I got the biopsy, and while it didn't really hurt, it just felt gross when the needle poked into the new kidney. That's all. I'm a bit overly squeamish, too. But after it was done, I have to say no biggie.
The problem in my case was that one of my medications was "poisoning" my new organ. I can't remember which drug it was. But it was either reduced or eliminated and Rapamune was added. Since then, knock wood, things have been fine.
I received my kidney eight years ago in November from my sister.
Hope this helps.
By the way, I always try to look to this Shakespeare quote whenever these things arise:
"Things without all remedy
Should be without regard: what's done, is done."

It's easier said than done, but worrying never solved anything.

Good Luck,
JW
John W.
mogold
Member
Username: Mogold1

Post Number: 2
Registered: 12-2009
Posted on Tuesday, January 05, 2010 - 04:50 pm:   Edit Post Delete Post Print Post

Seems like you all were right. Went to clinic today and my creatinine dropped to 1.7 after they lessened the dosage of Prograf. No need for the biopsy. It seems though every time I go there is something else to worry about. Doc said my magnesium levels were dangerously low .9 and put me on 1200 mgs of magnesium a day and have to go back for labs tomorrow. Always something! So glad I found this site though.
Donald Gold
Robin
Forum Leader
Username: Mamaru

Post Number: 582
Registered: 06-2008
Posted on Tuesday, January 05, 2010 - 05:08 pm:   Edit Post Delete Post Print Post

That's great news. Now you can breathe a sigh of relief and I hope the new year will be a special one for you!
Forum Leader - Living Organ Donation

Husband had a Bone Marrow Transplant 09/08/1993. Diagnosed with CML that went into a blast crisis and became ALL.

Donated a kidney to husband 6/26/2008
Husband and both kids have PKD

I WANT TO BE REMEMBERED FOR THE LIFE I GAVE AS WELL AS THE LIFE I LIVED
I found this on a website and its so true
MollyJo
Member
Username: Mollyjo

Post Number: 14
Registered: 07-2009
Posted on Tuesday, January 05, 2010 - 05:28 pm:   Edit Post Delete Post Print Post

The exact same thing happened to me. My baseline is 1.5 - 1.8 now, 3 years after transplant. Right after transplant, my creatine was at .8 - 1.1. I have never had rejection, infection, anything like that. So, it's fairly normal I was told for you to level out a bit higher than you were right after transplant. They were worried, did a biopsy for me, and I was fine- so even if you get a biopsy, just hold in your heart it's precautionary and you'll be fine :-)
Are you on prograf? They switched me to rapamune and .5 mgs of prograf when I was showing really high creatine numbers and that helped. Prograf is not good for kidneys....
Swell
Member
Username: Swell

Post Number: 38
Registered: 06-2009
Posted on Wednesday, January 06, 2010 - 06:19 am:   Edit Post Delete Post Print Post

Glad your creatinine is lower, and no biopsy is needed!
Hope everything is smooth sailing from here out!
FSGS ESRD 12/08
Kidney transplant 4/09
Medical College of Georgia Augusta, Ga.
Kidney donated by my wonderful husband!
Martha
Member
Username: Stellar17

Post Number: 9
Registered: 10-2009
Posted on Wednesday, January 06, 2010 - 09:41 pm:   Edit Post Delete Post Print Post

Alright I am also freaking out.. I am three months post transplant and my createnine keeps jumping around from a .9 to a 1.2 and then a 1.1. On monday it was at a 1.5. so I got a biopsy today and I'm still pretty worried about it. I dont know if its dehydration or if I'm rejecting. I sure hope not! I like my .9 level!
Justine
Member
Username: Fluffmom

Post Number: 10
Registered: 11-2009
Posted on Wednesday, January 06, 2010 - 11:33 pm:   Edit Post Delete Post Print Post

I had a biopsy recently my doctor knocked me out for it and when I woke up I had absolutely no pain and I had all the nurses ROTFL because I had a huge buzz from the ketamine they mixed with my propofol.
Swell
Member
Username: Swell

Post Number: 39
Registered: 06-2009
Posted on Thursday, January 07, 2010 - 06:36 am:   Edit Post Delete Post Print Post

Martha,

Are you on Prograf? I went through the same situation with my creatinine level, had 2 biopsies, and they found nothing. As my prograf dosage has been gradually lowered, my creatinine has been dropping, so they feel as if it might have been some prograf toxicity.
I hope your biopsy report is negative. Stay positive and stay hydrated!

swell
FSGS ESRD 12/08
Kidney transplant 4/09
Medical College of Georgia Augusta, Ga.
Kidney donated by my wonderful husband!
Martha
Member
Username: Stellar17

Post Number: 11
Registered: 10-2009
Posted on Thursday, January 07, 2010 - 10:54 am:   Edit Post Delete Post Print Post

I am on prograf 6 in am 6 pm and it blows! I hate hate hate prograf!! so far I have been down to 2 and 2, 3 and 4 and whatever else combination you want to throw in there.. Right now my prograf level is fine but normally it is always low so they keep upping the dose. They think I might start to become sensitive to the drug and thats why my createnine level is increasing
TransplantHELL
Member
Username: Transplanthell

Post Number: 59
Registered: 01-2008
Posted on Thursday, January 07, 2010 - 02:05 pm:   Edit Post Delete Post Print Post

Martha are you saying you take 6 mg Prograf in the AM and 6 mg Prograf in the PM?
Martha
Member
Username: Stellar17

Post Number: 12
Registered: 10-2009
Posted on Thursday, January 07, 2010 - 02:57 pm:   Edit Post Delete Post Print Post

yes six 1 mg pills in the morning and six 1 mg pills at night
TransplantHELL
Member
Username: Transplanthell

Post Number: 60
Registered: 01-2008
Posted on Thursday, January 07, 2010 - 04:08 pm:   Edit Post Delete Post Print Post

Wow, I didn't think they go that high. I think the highest my doctor said he's given anyone is 4 mg AM and 4 mg PM. But then again there are TX patients all over the country and world for that matter.

Maybe some patients' livers just don't absorb as much of the medication as others do.

As long as the prograf level doesn't get too high because that will hurt the kidney.
Martha
Member
Username: Stellar17

Post Number: 13
Registered: 10-2009
Posted on Thursday, January 07, 2010 - 05:41 pm:   Edit Post Delete Post Print Post

yeah my level is in the normal range.. I was talking to someone who was on 12 in the morning 12 at night and i thought that was nuts but i may be wrong about his dosage. Hopefully everything is fine though!
mogold
Member
Username: Mogold1

Post Number: 3
Registered: 12-2009
Posted on Thursday, January 07, 2010 - 07:54 pm:   Edit Post Delete Post Print Post

I was on four 1 mgs am and four mgs. p.m. right after my transplant. When my cratinine went from 1.4 to 1.8 they lowered me to 4 pills in the morning and 3 in the evening. Then my creatinine went down to 1.7. They then lowered me to 3 in the morning and 3 in the evening because the doctor suspects it is the prograf that is toxic to me even though my levels are fine. I will let you know if that was the culprit when I go back tomorrow. Seems to me if that was the problem, it would have been detected in the lab test. We'll see. Hope you stabilize,Martha.
Donald Gold
ChuckZ
Member
Username: Chuckz

Post Number: 869
Registered: 05-2006
Posted on Thursday, January 07, 2010 - 11:41 pm:   Edit Post Delete Post Print Post

Prograf toxicity is not unusual. Most centers will aim for an initial 12 hour trough of 8 to 12 ng/dL to start. The good centers will lower your prograf a little bit at a time, expecting the creatinine to remain stable or decrease a little each time they reduce your prograf dose. These centers will then target the serum prograf level at 6 ng/dL. In my opinion, this may still be too high for many patients, but that is just my own experience. Everyone is definitely different.

For newbies, it is absolutely necessary that you take your prograf doses exactly 12 hours apart. The last dose before your blood draw should be as close as possible to 12 hours from the time of the draw. If you are not consistent with taking prograf in this manner, your serum prograf level will vary and, if you have a reactive doctor, he or she will make adjustments when they shouldn't! If I were a nephrologist, I would ask my patients to record the times of their last 3 doses of prograf. Hopefully the blood lab accurately records the time of your draw. I would use this information, along with serum creatinine, to determine if an adjustment was necessary.

Chuck

PS when I started out, I was taking up to 15 mg twice per day. My liver was chewing the prograf up like candy. When my liver "cried uncle", my serum prograf level began to climb and my dose was lowered. I did show some toxicity at this level. I now take 5 mg once per week, but that is another other story.
TransplantHELL
Member
Username: Transplanthell

Post Number: 61
Registered: 01-2008
Posted on Friday, January 08, 2010 - 12:17 am:   Edit Post Delete Post Print Post

LUCKY ChuckZ and you take NOTHING else! We all strive to be like you! Or even better!
Martha
Member
Username: Stellar17

Post Number: 15
Registered: 10-2009
Posted on Friday, January 08, 2010 - 05:41 pm:   Edit Post Delete Post Print Post

I got some of my results back from my biopsy and she told me i wasn't rejecting after they looked at my slides and they reduced my prograf! wooo!
mogold
Member
Username: Mogold1

Post Number: 4
Registered: 12-2009
Posted on Saturday, January 09, 2010 - 10:58 am:   Edit Post Delete Post Print Post

Found out my creatinine level jumped from 1.7 to 2.1 just in three days! Doctors took me in for a biopsy yesterday. They were sure I was rejecting. Nothing showed on the ultrasound and I got the preliminary biopsy report back last night which showed no rejection so they released me from the hospital. Doc said I might have some toxicity issues but they haven't seen it in the blood draws. Meanwhile, they had lowered me to 3 mgs morning and 3 mgs evening of Prograf before the biopsy and my creatinine jumped. Now they sent me home over the weekend and tell me to try 3 mgs morning and 4 mgs at night. I have to come back again Monday to get the full biopsy report and hope my creatinine does not rise anymore. What a roller coaster ride we transplantees have to go through. Any ideas why my levels rise even though it rose on a lower dose of Prograf?
Donald Gold
makp20
Member
Username: Makp20

Post Number: 1
Registered: 02-2010
Posted on Thursday, February 04, 2010 - 07:48 am:   Edit Post Delete Post Print Post

Hallo. My girlfriend has had a transplantation 9 days ago. Since then the creatinine is always more than 2. The doctors are trying to find out the reason. If it doesn't go down (until tomorrow I think) they will do a biopsy. Is this normal? I would appreciate any kind of help/experience.
Thank you, keep strong,
mogold
Member
Username: Mogold1

Post Number: 15
Registered: 12-2009
Posted on Thursday, February 04, 2010 - 09:40 am:   Edit Post Delete Post Print Post

makp20,
My creatinine levels were never lower than 1.4 and that was for only a week after transplant. Since that time (I am 8 weeks post tx now) my creatinine has been over 2.0. They did a biopsy at 3 weeks post tx and found nothing. I was finally hospitalized last week because not only was my creatinine so high, I was feeling worse every day. Turns out I was severely dehydrated from incredibly high blood sugars and diarreha. They stablized my sugars in the hospital and gave me iv fluids (even though I was drinking tons of fluids). They released me from the hospital with a creatinine of 1.8. Three days later, it was 1.4. I feel so much better. My point is, the doctors are always looking for rejection. Nephrologists are looking at the kidney and sometimes it is something else that makes the creatinine spike. So maybe it is something like what happened to me and not a rejection. I hope your girlfriend's numbers go down and that she is not rejecting. I know how stressful it can be, having just gone through all of this. Hang in there,
Donald Gold
mak
Member
Username: Makp20

Post Number: 2
Registered: 02-2010
Posted on Thursday, February 04, 2010 - 10:10 am:   Edit Post Delete Post Print Post

Thanks for the reply Donald. Actually the creatinine has been falling day by day from 2.4 to 2.1. Tomorrow we'll see the results again. I think they are trying to find out the correct dose of some specific medicine. My only concern is if the doctors can face a rejection episode (when this is the case). Apart from that my girlfriend feels great and there is no other complication (lab results e.t.c). I just hope that it will continue to go down. Their goal is to make it less than 1.8. I'll let u know about new results.
Thank you for the support people, this forum is a precious source of information!
mak
Member
Username: Makp20

Post Number: 3
Registered: 02-2010
Posted on Friday, February 05, 2010 - 07:09 am:   Edit Post Delete Post Print Post

Update: 11 days after the transplantation creatinine is now 1.9. it kept falling (with some changes in the medicines) from 2.4 to 1.9. Everything seems to be better now.
girlfriend had a
Kidney Transplant (1/2010) donated from her father
4LB3RT0
Member
Username: B3t0m4n

Post Number: 1
Registered: 03-2010
Posted on Friday, March 12, 2010 - 10:52 am:   Edit Post Delete Post Print Post

Hi, My wife had a kidney transplant 3 weeks ago. Her creatinine was getting down after surgery, but now it rose to 1.7, I've read that this is kind of normal, but I'm still worried.
Ningshen
Member
Username: Ningshen

Post Number: 2
Registered: 07-2013
Posted on Monday, July 15, 2013 - 05:32 pm:   Edit Post Delete Post Print Post

Hi, I am 31 yrs old, underwent kidney transplant on Jan 25th 2013. The creatinine level was good for first 3 months but has been fluctuating since then with the highest level being at 1.32. I am very worried and unfortunately my nephrologist hasn't been that helpful. Pls advise if this is diet related or what are the means through which i can lower the level. Thank you all in advance.

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