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TransplantBuddies.org Forums » Kidney - Pancreas Transplant » Creatinine Level Anxiety (@1.8) « Previous Next »
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Lisa Wells
Member
Username: Lisamw

Post Number: 2
Registered: 04-2014
Posted on Friday, April 04, 2014 - 05:51 pm:   Edit Post Delete Post Print Post

Hi all,

I had a transplant in August of 2010. I received a live donor kidney. Over the last couple of years I've been plagued with kidney infections which, according to a biopsy about a year ago, have caused some scarring. After significantly increasing my water intake, and decreasing my soda drinking, I got my creatinine down to 1.4, which my doc was very happy about. Then after a recent infection it has jumped back up to 1.8. I would like to know whether there is any way to predict how much longer my kidney will last with creatinine that high, and scarring present. I am very nervous that I'll be put back on dialysis any minute now, and I can't get a straight answer from my doctor.
Forest
Member
Username: Forest

Post Number: 41
Registered: 10-2011
Posted on Saturday, April 05, 2014 - 08:15 am:   Edit Post Delete Post Print Post

Lisa, Hello and hugs. I have had no problems you mention but I drink only water and unsweet tea and coffee since my transplant in 2011. Any kind of fizzy cola, with dark color or clear I avoid. My creatinine has been normal since my TX, except for an early (3 days post tx) biopsy for suspected rejection, which there was none. I had a "chyle" leak that caused elevated creatinine. The chyle leak was dried up in 4-5 days, me NPO. I would avoid dark, carbonated drinks, just to be safe. Get plenty of liquids every day. Best wishes Lisa!
Forest

U/C, 1993, PSC, 2000
Liver/Kidney transplant 8/21/11
St. Louis University Hospital
Gene
Member
Username: Gene2x

Post Number: 50
Registered: 11-2011
Posted on Saturday, April 05, 2014 - 08:34 am:   Edit Post Delete Post Print Post

Lisa,

My "normal" creatinine after my transplant in Aug 2011 has been between 1.6 and 1.9. It spiked to 2.5 during a bout with the BK virus, but returned to my normal levels 6 weeks or so after getting rid of the virus. For myself I wouldn't spend a lot of time worrying about a creatinine level of 1.8, unless it continues to elevate. Sorry your doc won't give you a straight answer. Maybe you should get a second opinion.

Also reviewing your meds with an eye to reducing your immunosuppressives might be a thought. I've been taken off Cellcept to try and boost my immune system to prevent another episode of the BK virus. In your case it might help with the infections. I only take two drugs for rejection 1.5 mg of Prograf twice a day and 3mg of sirolimus once a day. No steroids. I'm a 1/6 match with a live donor and the drugs seem to be working fine so far.

Good luck and best wishes
Kidney Tx - Aug 4, 2011
VA Pittsburgh Health Care Center
Follow UPMC non-steroidal protocol
Live donor was my radio operator in Vietnam
1/6 match
Kidneyboy
Member
Username: Kidneyboy

Post Number: 65
Registered: 01-2012
Posted on Saturday, April 12, 2014 - 09:48 pm:   Edit Post Delete Post Print Post

Hi Lisa,
I wouldn't be worried that dialysis will begin any time soon. A creatinine (CR) in the 1's, even fluctuating into the 2's will not cause a return to treatment. It will alert your Tx team to investigate further. Most patients entering dialysis have a CR over 6. As for time remaining, it will depend on the cause. High levels on immune-suppressants can throw of CR as well as infection. Blood work and tweaking medication will be the order of business for quite a while, barring any major event.

Allowing your team to systematically determine the cause and having faith in them to resolve it will have you up and running again. I encourage you to ASK, ASK, ASK your Tx team as many questions as you wish. Knowing is more comforting than guessing.
Bala
Member
Username: Balapandian

Post Number: 65
Registered: 08-2010
Posted on Sunday, April 13, 2014 - 11:37 pm:   Edit Post Delete Post Print Post

Lisa,

I'm sorry to hear about your infections. I'm also suffering from the kidney infections since my transplant, which is causing me tiredness and loss of job. reducing the immuno drugs will help to fight the kidney infections. I'm also taking D-mannose powder and herbs to help fight the infection. you need not worry about your creatinine level, it will come down once the infection is cleared.

what immuno drugs and antibiotics do you take? pls email me balapandian@yahoo.com

Bala.
Apr 2013 Kidney Transplant
Jun 2012 Both kidneys removed
Polycystic Kidney Disease
Lisa W
Member
Username: Lizzyg

Post Number: 4
Registered: 07-2013
Posted on Sunday, July 13, 2014 - 06:23 pm:   Edit Post Delete Post Print Post

Hi all,

I just realized I received responses to my post here from a couple of months ago. At the time I didn't think it posted successfully since I got an error.

I just want to thank everyone for helping me calm down about my creatinine levels a bit. I have really been in a panic of late since there have been further complications. Now that I've read this, it gives me some perspective, and piece of mind.
Cora
Member
Username: Cora

Post Number: 556
Registered: 06-2007
Posted on Sunday, July 13, 2014 - 06:56 pm:   Edit Post Delete Post Print Post

Hi Lisa. Sorry, but I just saw your post from April, so I thought I'd add my 2 cents now. First, you need to keep things in perspective. Since my cr. was about 11 or 12 when I went on dialysis, 1.8, is not really "high". And since my transplant almost 12 years ago, my levels have fluctuated a lot. I range anywhere from 1.7 or 1.8 (which was my baseline for quite a few years) to 2.5 and right now (due to other medical reasons and weight loss due to illness) I run around 1.5. But illness, hydration, food, exercise, med levels, and probably the phase of the moon, can all affect your cr.

What you need to watch for is "creatinine creep". The number going up steadily over several (at least 3) labs, spaced out reasonably.

How are you doing now? I hope all is well.
Dx with T1 in 1966
Kidney tx in Minneapolis 2002
Pancreas tx in 2008

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