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Unregistered
April 3, 2008, 07:56 PM
I just found out I have Bilateral Renal Cortical Atrophy. I dont really know much about it. My doctor didnt tell me anything. He just referred me to a Nephrologist and it will take me a month to get in. I am freaking about because this seems like something that needs to be addressed a.s.a.p. Can anyone please tell me what this means and if it is as bad as it sounds? Thanks.

DoriSchatell
April 7, 2008, 01:44 PM
Hi Unregistered,
Sorry for the delay in answering, but we were at the NKF meeting in Dallas. I can only imagine how scary it must be to be told that something is wrong with your kidneys, but not knowing what or how important it is.

The renal cortex (plural = cortical) is the layer of the kidney under the protective capsule. It contains most of the renal tubules which are the parts of the nephrons (kidney filters) that deal with fluid removal. Here is a Wikipedia entry that can tell you more about that part of the kidney: http://en.wikipedia.org/wiki/Renal_cortex. Atrophy = shrinking. Bilateral = both sides. So, basically both of your kidneys are smaller than would be expected, due to shrinking of the layer that contains the parts that remove extra fluid from your blood. How much smaller they are than normal, I don't know (and suspect you don't, either).

The question then is, what causes renal cortical atrophy. It's fairly hard to find information about it. We're not doctors, but I did look in the published medical literature, and didn't find much--probably because what's there is under some other search term (cortical atrophy is a finding, not a disease itself). One cause of it can be interstitial nephritis - inflammation that may be acute (sudden onset) or chronic. Here's some information about it: http://www.nlm.nih.gov/medlineplus/ency/article/000464.htm. Certainly there are other causes, too.

What led to the diagnosis in the first place--were you having any symptoms of a kidney problem? Were your lab tests abnormal in some way? This might help us to figure out where to look for more information.

In the meantime, it's worth at least calling your regular doctor to see if he or she can give you a bit more detail. It's pretty hard to have to wait a month--is there another nephrologist who could see you sooner? It's tough to say if waiting a month is a problem when you don't know what's causing the condition.

Unregistered
April 8, 2008, 04:21 PM
Type the name of the disease into your search engine on the Internet and you will get all the answers you require. Good luck!

Beth Witten MSW ACSW
April 8, 2008, 10:55 PM
Kidney atrophy sometimes is related to a condition called renal artery stenosis which occurs when there is blockage in the renal artery that provides blood to the kidney. One symptom of renal artery stenosis is high blood pressure. RAS may be reversible. It would be important to find out if this could be the cause of your kidney's shrinkage. In case you want to read about renal artery stenosis:
http://www.nlm.nih.gov/medlineplus/ency/article/001273.htm

Here's a picture of a healthy kidney and an atrophied kidney:
http://library.med.utah.edu/WebPath/RENAHTML/RENAL013.html

Unregistered
April 9, 2008, 07:06 PM
Thanks so much for the feedback. I was however lucky to get a quicker appointment to see the Nephrologist. He told me my kidneys were at 60%. He thinks the ducts at the end of each utreter is letting things back up the tracts. So, I have a test to do to see if that is the cause. Does anyone know anything about that? I feel like that may be my problem because after drinking things like coffee I feel pain going from one kidney down to my bladder and to my other kidney. I have always had probelms with UTIs as far back as I can remember. I am so tired of doctors not caring and thinking things will go away on their own. My Nehprologist made me think that this isnt a serious problem, but other people keep telling me they would be having things done quick. Does anyone else feel the same way?

Unregistered
April 9, 2008, 07:29 PM
Hi Unregistered,
Sorry for the delay in answering, but we were at the NKF meeting in Dallas. I can only imagine how scary it must be to be told that something is wrong with your kidneys, but not knowing what or how important it is.

The renal cortex (plural = cortical) is the layer of the kidney under the protective capsule. It contains most of the renal tubules which are the parts of the nephrons (kidney filters) that deal with fluid removal. Here is a Wikipedia entry that can tell you more about that part of the kidney: http://en.wikipedia.org/wiki/Renal_cortex. Atrophy = shrinking. Bilateral = both sides. So, basically both of your kidneys are smaller than would be expected, due to shrinking of the layer that contains the parts that remove extra fluid from your blood. How much smaller they are than normal, I don't know (and suspect you don't, either).

The question then is, what causes renal cortical atrophy. It's fairly hard to find information about it. We're not doctors, but I did look in the published medical literature, and didn't find much--probably because what's there is under some other search term (cortical atrophy is a finding, not a disease itself). One cause of it can be interstitial nephritis - inflammation that may be acute (sudden onset) or chronic. Here's some information about it: http://www.nlm.nih.gov/medlineplus/ency/article/000464.htm. Certainly there are other causes, too.

What led to the diagnosis in the first place--were you having any symptoms of a kidney problem? Were your lab tests abnormal in some way? This might help us to figure out where to look for more information.

In the meantime, it's worth at least calling your regular doctor to see if he or she can give you a bit more detail. It's pretty hard to have to wait a month--is there another nephrologist who could see you sooner? It's tough to say if waiting a month is a problem when you don't know what's causing the condition.

THANKS SO MUCH FOR YOU REPLY

A CT scan is what led to the diagnosis. I also had an ultrasound 2 years ago when I was pregnant with my first child that showed an infection of the right kidney that no one told me about. Also my creatinine levels were high. I think they were at 1.7. I have also had anemia for at least 2 and a half years. I have no idea if that could have led to the kidney damage or not because every blood cell in my body was very low. Any advice you could give me would be very appriciated.

DoriSchatell
April 9, 2008, 09:03 PM
Hi unregistered,

I'm so glad you were able to see the nephrologist sooner! It's terrific that you weren't in limbo for a month. Certainly, that will help your stress level. :-)

Actually, what you have is a lot of good news. Having your kidneys working at 60% means there is every chance that fixing the problem will leave you with plenty of kidney function to get through the rest of your life with, without ever reaching kidney failure.

What the nephrologist suspects (and you've felt) is called vesicoureteral reflux--urine backs up into the kidneys and causes...repeated UTIs (but part of you knew that, didn't it?). Reflux is something you have from birth, but it can take a while to find it. The anemia is probably caused by the kidney damage, which make a hormone (erythropoietin) that signal the bone marrow to make red blood cells. Erythropoietin can be replaced with injections if fixing your kidneys doesn't bring your levels back up to normal.

The test you are going to have is probably an IVP (intravenous pyelogram) to look at the blood vessels and ureters. Since this test uses X-ray contrast dye, be sure that the radiologist dilutes the dye or uses one that is less likely to cause further harm to your kidneys. A drug called "mucomyst" (which apparently tastes awful) is believed to help protect the kidneys from damage caused by X-ray dye.

If the test shows reflux, your kidneys can be fixed with surgery. I know someone who had this done, and her kidneys are fine today. Here is a link to a page from the National Library of Medicine patient website about reflux with more information: http://www.nlm.nih.gov/medlineplus/ency/article/000459.htm. If this is what you have, you may want to keep an eye out for symptoms in your children, who may also have the condition.

Unregistered
April 10, 2008, 07:49 AM
Hi unregistered,

I'm so glad you were able to see the nephrologist sooner! It's terrific that you weren't in limbo for a month. Certainly, that will help your stress level. :-)

Actually, what you have is a lot of good news. Having your kidneys working at 60% means there is every chance that fixing the problem will leave you with plenty of kidney function to get through the rest of your life with, without ever reaching kidney failure.

What the nephrologist suspects (and you've felt) is called vesicoureteral reflux--urine backs up into the kidneys and causes...repeated UTIs (but part of you knew that, didn't it?). Reflux is something you have from birth, but it can take a while to find it. The anemia is probably caused by the kidney damage, which make a hormone (erythropoietin) that signal the bone marrow to make red blood cells. Erythropoietin can be replaced with injections if fixing your kidneys doesn't bring your levels back up to normal.

The test you are going to have is probably an IVP (intravenous pyelogram) to look at the blood vessels and ureters. Since this test uses X-ray contrast dye, be sure that the radiologist dilutes the dye or uses one that is less likely to cause further harm to your kidneys. A drug called "mucomyst" (which apparently tastes awful) is believed to help protect the kidneys from damage caused by X-ray dye.

If the test shows reflux, your kidneys can be fixed with surgery. I know someone who had this done, and her kidneys are fine today. Here is a link to a page from the National Library of Medicine patient website about reflux with more information: http://www.nlm.nih.gov/medlineplus/ency/article/000459.htm. If this is what you have, you may want to keep an eye out for symptoms in your children, who may also have the condition.

Wow thank you so much. Your information was so helpful and yes that is the test I am getting done. This is the 3rd test im getting done that has put dye in my body. I had no idea that it would take a toll on my kidneys. The other two tests were taken to see if i have gallstones. My doctor unfortuantely told me that my kidney damage was permanent but others have been saying that they could get better. So I am hoping through all the natural cures I am using that they could get back to 100%.

DoriSchatell
April 10, 2008, 09:19 AM
Kidneys don't generally recover function they've lost, but with 60%, you have a "cushion" of 40% before you would need dialysis or a transplant. If you protect that, it's very likely that your kidneys will live as long as you do.

Please be careful about natural cures--some of them can harm you (Chinese herbs in particular). Do check out our Alternative Therapies module of Kidney School at http://www.kidneyschool.org. It's free, and shares our research about which types of Complementary medicine can be helpful and which ones are not wise if you have a kidney problem. (NOTE: We are updating all of the modules. I think the only thing that has changed is that there are more data on Kava causing liver damage).

Unregistered
April 15, 2008, 03:06 PM
I saw your post and wanted to let you know that I am in the SAME boat as you!! My function is 70% I lost all function in my left kidney but that is how this all started. I went in for an xray of my back and they saw calcifications in my kidney, sent me for a CT scan saw that my left kidney was atrophic from there I went to a renal scan and my right kidney is enlarged, the left filled and never drained. My doctors didnt seem to be too worried either. I felt like they told me this info and just left me in the dark, like ok now what?? I too had MANY UTI's and kidney infections, one so bad when I had my first son I was in the hospital for 5 days. I am anemic as well but I dont have high blood pressure so they cant really tell me why my kidneys are so damaged either but it is permanent and you cant get that function back. I just wanted to post and let you know your not alone. It is scary but after the shock sets in and you read and learn as much as you can about all this it will be a little easier to live with. Good Luck with your tests and keep us posted!

Unregistered
April 20, 2008, 07:35 PM
I saw your post and wanted to let you know that I am in the SAME boat as you!! My function is 70% I lost all function in my left kidney but that is how this all started. I went in for an xray of my back and they saw calcifications in my kidney, sent me for a CT scan saw that my left kidney was atrophic from there I went to a renal scan and my right kidney is enlarged, the left filled and never drained. My doctors didnt seem to be too worried either. I felt like they told me this info and just left me in the dark, like ok now what?? I too had MANY UTI's and kidney infections, one so bad when I had my first son I was in the hospital for 5 days. I am anemic as well but I dont have high blood pressure so they cant really tell me why my kidneys are so damaged either but it is permanent and you cant get that function back. I just wanted to post and let you know your not alone. It is scary but after the shock sets in and you read and learn as much as you can about all this it will be a little easier to live with. Good Luck with your tests and keep us posted!



Hi, thanks so much for your post. I am feeling the same way you are with doctors. My Nephrologist acts like he could care less. Anyway I had my test done and I have Reflux Nephropathy. Im quite scared about that. I've searched all over the internet and theres not to much information out there. I'm also so happy that i've finally found out what has been wrong with me. I've had this problem for years and thanks to the neglect of many doctors I have more kidney damage than I need to have done. I have actually started to feel better here lately since i've found out what is wrong with me. I completely changed how I take care of myself. I no longer have the anemia thanks to oil pulling. This site has helped me so much more than my doctor has. THANKS TO ALL OF YOU THAT POSTED A COMMENT.