high creatinine levels

[Unregistered]

I got really sick on vacation, severe nausea, vomiting, abdominal cramps. I went to the emergeny room because I was so ill. To rule out any surgical problems they wanted to do an abdominal CT scan. They first took blood, my creatinine levels were 1.9 (I am a 40 y/o woman) This concerned the ER physician. Due to the high creatinine levels they did not use the IV dye but had me drink the dye orally. They then ran the abdominal CT scan.
The scan showed a healthy abdomen except for my kidneys. The Physician told me the was visible scarring of my Glomours (?) cells located in my kidneys. He refered me to a nephrologist.
I have a history of Kidney stones, Interstitial cystitis and chronic UTI's.
My concern is I have had an uncurable kidney infection for around 1 1/2 years. Treated at least 6 times by my General Doctor and a urologist. I have now read the symptoms of CKD, I have many including exhaustion, itching, thinning hair, weight loss, bad taste in mouth, dizziness, leg and lower back pain.
What are the chances of my having moderate to severe CKD and just finding out by chance? On a trip to the ER?

[DoriSchatell]

Hi Unregistered,

Unfortunately, a LOT of people each year find out that they have some degree of kidney problem pretty much by accident. With a creatinine of 1.9 at age 40, if you are African American, your kidneys are working at about 38%. If you are another race, 31%. (This is according to the online calculator of glomerular filtration rate (GFR), which you can find and use yourself at: http://www.kidney.org/professionals/KDOQI/gfr_calculator.cfm. This corresponds to stage 3 chronic kidney disease (CKD)--or almost stage 4 if you are not African American.

It may hardly seem that there is good news here, but the reality is, you could have gotten all the way to stage 5 with no really noticeable symptoms (some people have them, others do and don't realize it, and some folks just don't). That would have given you zero notice, and your ER visit then would likely result in immediate, on-the-spot dialysis. That would not be a good way to go. You have some advance notice, and some time to slow down the rate of your CKD.

Getting some other treatment for that ongoing infection would be pretty high up on the list if it were me. We're not doctors here, but it makes sense that your kidneys have been damaged in large part by things that should be stoppable (kidney stones, infection). If 6 courses of antibiotics haven't worked, I'd want to be asking: What's next? Can I try IV antibiotics? (Be sure the antibiotics chosen aren't toxic to the kidneys--some are).

Please read our information about CKD, which will tell you about risk factors and things you can do to protect your kidney function, at http://www.lifeoptions.org/kidneyinfo/ckdinfo.php. Knowledge is power, and you have time to make a difference--if you can stop the progress of your disease, it is possible to outlive your kidneys with 30-40% kidney function. If not, you have time to research treatment options that will best fit your life and let you keep doing what you value most.

[Unregistered]

Dori,
I'd first like to start out by letting you know I am a caucasion 40 y/o woman.
I thank you for your knowledge and willingness to answer my question so honestly. This whole situation has been quite shocking to say the least.
According to my urologist, as of yesterday, my urine showed no signs of infection. We are truly hoping the chronic infection is gone. She will be reviewing my second blood test and the CT scan taken on my vacation. At that time she will be getting back to me. I don't think she wanted to alarm me until she knew the full scope of the problem.
Also, thank you for the links I will be sure to read them. I will also register as a user and return for support and education often.
I was surprised to see you are out of Madison, Wisconsin as I am a Milwaukee native and have been living here my whole life

Thank you again
Laura

[DoriSchatell]

Hi Laura,

I'm glad you came back and will register--that way you'll know if someone else replies, too. :-)

There's no doubt that finding out your kidneys aren't working as well as they should is a huge shock, and you're doing exactly the right things by seeking out information and working with your doctor. Please feel free to ask any questions you like, and we'll do our best to find you answers if we don't have them ourselves. Another resource to check out is our Kidney School, which is an online learning center in 16 modules (http://www.kidneyschool.org). You can go through them live (they take about 30 minutes each) or download them as pdfs and read them. It's available 24/7 and you can choose whatever topic interests you at the moment and go back as often as you like.

p.s. I grew up in Milwaukee

[Unregistered]

Hi Dori,

I have registered for the site and I am waiting for the moniters to approve my registration.
I did want to thank you for all of you help and your quick responses.
I am overwhelmed, scared, confused and somewhat depressed.
I am not feeling very well today. I have a bad headache, upper right abdominal pain, body aches, terrible dizziness, nausea and I am exhausted.
I will wait to see what my doctor recommends as the next step.
I have began kidney school in hopes it will aid me in the future.
Hope to talk soon!
Laura

[Beth Witten MSW ACSW]

I'm a social worker, not a doctor, but if someone with kidney disease has pain at all, it is usually related to a kidney infection and their pain is in the lower back above the waist instead of in the upper abdomen. The symptoms you describe suggest to me that you may have some other GI problem. You could have gallstones or pancreatitis....possibly something else Both gallstones and pancreatitis can cause pain in the upper right abdomen along with nausea and vomiting.

Back to my role as a social worker, I used to tell patients that it was very common and normal to feel overwhelmed, anxious, depressed and even angry when learning they had damaged kidneys. Some things they told me that helped they included:
-- learning all they could about kidney disease and prevention and treatment strategies, by attending classes, reading books, magazines, searching the Internet (.gov, .edu, .org) to feel in as much control as possible
-- asking questions and seeking advice from doctors and other healthcare team members to make informed decisions about protecting their kidneys and planning for the future in case their kidney damage progressed
-- talking with others who have been through what they're going through about what they did to maintain a sense of hope and to set future goals rather than allowing kidney disease to cloud their future
-- staying physically active to keep their bodies as physically healthy as possible
-- maintaining relationships with family, friends, neighbors, and community and asking for help and emotional support as needed to stay emotionally healthy

Most of the people I've known have shown tremendous strength and resilience and I'm sure you will find the courage to do what you need to do to do well with kidney disease. You've taken a tremendous step toward that by reaching out and posting on this website.

[Unregistered]

A little over a year ago i donated my kidney to my wife.
about a week ago i had some routine blood work done for a physical. now my creatine level is above normal. not much it's 1.45 is there any way to bring this down to normal. i am concerned i know that this would have happened with both kidneys but becaus in kidney failure not just one goes they both go. just wondering why though this might be happening, because the transplant dr. said and i quot The protine levels go up a very little bit in you in your urine

mike

[DoriSchatell]

Hi Mike,

It must be pretty scary to find that your creatinine level are higher than they should be. Creatinine can vary from day to day, so please don't panic on the basis of one blood test. Ask the doctor to repeat the test next month, and perhaps again a month later.

You can also ask the doctor to do a urinalysis, which can provide some more clues about what might be going on.

If these additional and/or repeated tests are still above normal, ask for a referral to a nephrologist (kidney specialist).

[Unregistered]

I can relate to what Mike is saying. I also have had blood tests come back with high levels of creatinine. I have now had multiple tests and my levels of creatinine seem to be getting worse. The last test was double what the normal levels are. I have no idea what this means and I'm scared. Its going to take months before I can find out anymore information due to the wait at the hospital. Is my only choice right now to try to be patient and wait?

Lacey

[DoriSchatell]

Hi Lacey,

I hope you've read this whole thread, because everything that everyone has said so far is relevant to what you are going through. I'm sorry to hear that your creatinine levels are going up. Since healthy kidneys remove creatinine (a waste product) from the blood, having the levels rise--and keep rising--certainly seems to indicate that something is wrong. You've already had the levels redrawn, so the results are probably not due to being dehydrated.

As far as knowing what your levels mean, if you know what they are, you can plug them into an online calculator that will tell you your level of kidney function and what you can do. There's a very good one here: http://www.kidneytrust.org/learn/calculate/.

We have information on this site about kidney risks and what you can do to protect your kidney function--and that's good to learn about while you wait for your hospital appointment (or seek out another doctor who can see you faster): http://www.lifeoptions.org/kidneyinfo/ckdinfo.php.

There is no doubt that all this is very scary, but what's MOST important to know is that even if your kidneys fail, you can have a good life. If you get to the point where you want to know about options for kidney replacement treatment, come on back and we'll tell you more.

[Unregistered]

I have a good friend diagnosed with Amaloid which is very rare and incurable that over time will spread to organs within the body. He recently ws told by his doctor that he had high levels of creatinine about 1.6 which is at the high end of the range given by his general physician of 1.0 - 1.6. The nephrologist has indicated that it should be at the 1.0 level. He is worried about the fact that the Amaloid has matastisized to the kidney. In an effort to try an alleviate this valid concern I pointed out that there were probably many reasons for an elevated creatinine level and that the more there were the more likely it wasn't a transferance of the Amaloid but rather some other factor relevant with a 67 year guy in otherewise good shape. I am asking this question in hopes that I might be able to show him a response that would help calm his concerns. He goes into for a kidney biopsy tomorrow.

Sorry for the short notice

[DoriSchatell]

Hi Unregistered,

Primary amyloidosis is a very rare disease (affecting about 8 people per million) that causes deposits of protein fiber tangles anywhere in the body. No-one knows what causes it. The protein deposits invade (they don't metastasize--that's a cancer term) organs and tissues, often in the heart, wrists, GI system, and kidneys. Sometimes chemotherapy or stem cell transplants are used to try to control it, but often the treatment is directed at helping the symptoms. Here's a good article about it from the Mayo Clinic: http://www.mayoclinic.org/amyloidosis/.

Serum creatinine is one measure of how well the kidneys are working, because healthy kidneys remove creatinine from the blood. Here is an online calculator where the glomerular filtration rate (GFR), a more accurate measure can be found. If your friend is black, at age 67 with a creatinine of 1.6, his GFR would be 39% (normal is 100%). If he is any other race, his GFR would be 32%. Either way, this would be stage 3 chronic kidney disease; stage 5 (15%) would be kidney failure. (Here is the calculator: http://www.kidneytrust.org/learn/calculate/.

Yes, there are many other causes of a higher than normal creatinine--but what is important is that he take steps to protect his remaining kidney function. If he can keep 32% function, he could outlast his kidneys. Here is some information about how to protect kidney function: http://www.lifeoptions.org/kidneyinfo/ckdinfo.php

Your friend may be worried that if the problem in his kidneys is due to amyloid that he will die. Please let him know that even if his kidneys do fail--from amyloid or any other cause--there are treatments that can allow him to live a good life. Every year in the U.S., more than 100,000 people have kidney failure. Most people don't know that there are 6 or more different ways to do dialysis (a treatment for kidney failure), and that some of them allow a much more normal lifestyle than others. We have another website about home dialysis treatment options here: http://www.homedialysis.org

Your friend is lucky to have someone like you watching out for him. I hope you'll share this information. Certainly he is worried and scared, and this is very normal. Another resource you might point him to is our Kidney School, which was designed for people with stages 3-5 chronic kidney disease. He might want to start with the Coping module. Kidney school is free, online at: http://www.kidneyschool.org.