New SCARED!!

[ChulaGarza]

Hello Everyone I am new to this board. I was looking of others to talk to. I am 32 married and the mother of 3 boys (12, 4 and 2)I was recently dx with this about 6 months ago and I am terrified!!! I was born with medullary sponge kidney apparently and never knew it until I went in for some x-rays. My left kidney is atrophic and the right is 70% I have been reading all I can on this. Does this disease ALWAYS progress?? What is the normal follow up for people with my stage of the disease? Also, I went in for a sinus infection and they gave me amoxicillin, should I be taking this?? the doctor knows I have kidney disease, I was just wondering what others think. I look forward to hearing from some of you. Thank you for reading my pos.

[DoriSchatell]

Dear Chula,

It is very normal to be scared when you find out that something is wrong with your health--and you're doing exactly the right thing by seeking information. We're not doctors, but we can help you find answers--or at least frame the questions.

Here is a patient article about medullary sponge kidney from the Mayo Clinic (http://www.mayoclinic.com/health/medullary-sponge-kidney/AN00343).

This article from Merck has more information about what to expect--in most cases, it sounds as if there may be more of a tendency to develop kidney stones or infections, not kidney failure: http://www.merck.com/mmhe/sec11/ch146/ch146m.html. Here is a support group for folks who have MSK: http://www.communities.ninemsn.com.au/medullaryspongekidney

Please check out our useful information about how to protect your kidney function--that direct link is: http://www.lifeoptions.org/kidneyinfo/ckdinfo.php.

As far as drugs to take, be sure to tell your doctor and your pharmacist that you have reduced kidney function, so they can guide you. You can also look up drug side effects yourself at: http://www.rxlist.com.

Good luck, and keep asking questions!

[ChulaGarza]

Thank you SO much for all your information. I printed it off and read it. I really appreciate it! I just feel like I am sitting here doing nothing waiting for it to get worse. You eased my mind a bit.

I didnt mention in my post the dx was Chronic Kidney Disease stage 2, as well as the medullary sponge kidney. I am not sure that since it is CHRONIC kidney disease if that means it WILL progress and there are things I need to do to slow the progress?

[DoriSchatell]

I don't know that Stage 2 necessarily means that it's going to progress--it may just reflect what you already know: that there is a bit of damage (not really that much).

It would definitely be wise to take precautions to protect your kidneys, like not smoking, always telling doctors and pharmacists before you take any new drugs, etc. -- you can read about how in that link from this site. You can easily live out your life with the kidney function you have as long as you keep it safe. Since you know about the MSK, you have a chance to do that, which is a good thing and can help you stay healthy.

[PenniIdaho]

Hi.

I am 41 and have had type 2 diabets for 10 yrs and not taken very good care with it at all. No insurance, husband in grad school...

I am having kidney dull pain and heat on my right side. I went to the Dr the other day at the Clinic and got an antibiotic as I thought it was an infection. However, she said she didnt think that was what it was as my urine test was normal.

I am on the antibiotic for 3 days and the pain is still there. She had mentioned that it could be a damaged kidney from the diabetes and in one moment she said polycistic, however, that is hereditary and noone in my family has kidney disease.

I go back on Wed for another pee test and then go from there.

I feel fine, I have been sweating or feeling like that with no temperature. And I'm feeling a bit chilled. The nausea is from the diabetic meds I am back on.

Someone please tell me I'm not going to die!!!!!!!!!!!!!!!!!!!!!!!!!!! I 'm so afraid.

Penni chirowife03@yahoo.com

[DoriSchatell]

Hi Chirowife,

It's frustrating (and scary) when doctors speculate about what might be wrong when they don't really know yet. Only about 1 in 10 people with diabetes ever develop kidney problems. A normal urine test suggests that you are NOT spilling protein--which would likely be the first sign of early kidney damage due to diabetes. So, please don't panic.

Dull pain in your side could be back pain or any number of other things. It could even be a kidney stone. The reality is, you don't know until you know, so there's no point in borrowing trouble until you have an idea of what you're dealing with. The fear that you have may be because you don't know yet--so you are assuming the worst.

Even if you did have some kind of a kidney problem, it's likely that you've caught it early enough to do something about it. If nothing else, this scare might be a wake-up call to take better care of yourself and your diabetes so you don't have to worry so much about long-term complications.

You don't need insurance to go on the American Diabetes Association website and learn about exercise (walking is good!) and diet to help keep your blood sugar more level. Here's a link to their Type 2 diabetes info http://www.diabetes.org/type-2-diabetes.jsp.

Good luck, and let us know how it goes.

[Beth Witten MSW ACSW]

Being a social worker, I feel like I need to address the concern that you don't have health insurance. You say your husband is a grad student. If he can sign up for the school's insurance and get spouse coverage too, that could open more doors to where you can get healthcare.

Dori mentioned the possibility of a kidney stone. Kidney stones are often painful and can cause fever and chills. Usually there is blood in the urine but it may be so little that you can't see it. Did you doctor test your urine for blood? Did your doctor suggest doing an x-ray or sonogram? Here are a couple of websites that describe kidney stones, diagnosis and treatment:
http://www.nlm.nih.gov/medlineplus/kidneystones.html
http://www.clevelandclinic.org/health/health-info/docs/3800/3898.asp?index=12390

[JLP01234]

I had complete kidney failure and uremia 2 years ago. I had dialasis once and now have only 30% of my kidneys working. I am a stage 3. I wonder if any one else with this has been left feeling mentally slower. I have a harder time making up my mind and some times feel so dum. Is this common? I know it is different but can find no information that talks about this. Help.

[DoriSchatell]

Most people who are in the process of kidney failure will develop anemia--a shortage of oxygen-carrying red blood cells. Have you had your blood tested? A hemoglobin (Hgb) or hematocrit (Hct) level that is below normal would suggest anemia. These tests are part of any standard complete blood count. Anemia can cause mental fuzziness and a sense that you are not thinking as well as you usually are.

Ask your doctor if you might have anemia. If so, the treatment would be injections of an ESA drug (erythrocyte--or red blood cell--stimulating agent). Since you have stage 3 CKD, the drug would either be Procrit or Aranesp. Only about 1 in 4 people with CKD gets treatment for anemia before starting dialysis. But getting treatment for anemia, if you have it, can help improve your energy level--and your thinking ability.