ckd 4 and alport syndrome: First time... - Early CKD Support

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ckd 4 and alport syndrome

wendythemom profile image

First time posting!

I was diagnosed with proteinuria 20 years ago. I have taken meds ever since. In the last 2 years my kidneys have declined and I now have a GFR of 21. Dr. says next time I will register with transplant unit. I have changed my diet to be low potassium, but my dr hasn't said anything else would help. Looking at Dialysis by year's end.

13 Replies

I am sorry you are having these problems.

Have you been on any meds to control the Proteinuria in your urine?

I am currently taking 4-5 different meds for my condition.


Wish you had been active on this site earlier. There is so much more that you can do to control and even improve your kidneys. Low salt (the biggie), low potassium, low phosphorous, low protein are all things they tell people to do when their kidneys get worse. I am a firm believer that if we do those things earlier on, we may never get to end stage. I improved from 36.6 to 54.0 by making major changes in my diet and by drinking more water.

Good luck!

Margie5967 profile image
Margie5967 in reply to lowraind

Thank you, that’s so encouraging.

Hi did you make any changes to your diet or health once you were diagnosed?

Margie5967 profile image
Margie5967 in reply to Stevo99


I immediately went low sodium.

Low protein.

My other labs are normal.

Potassium on the low end.

I walk abt 5 miles 3 or 4 times a week.

I was already drinking water.

But I have since increased.

You have not said what caused your kidney problems. But I will say that I had 20% three years ago and am not yet on dialysis so don't write yourself off. I have IGAN which is what caused my kidneys to fail. At time of diagnosis I was given 3 to 6 months before dialysis but I am still going.

Margie5967 profile image
Margie5967 in reply to rabbit01

Wow... that makes me feel so much better.

I don’t see the neph until this Thursday.

But my GP thinks it many have been caused by NSAIDS.

I have since stopped there use.

I am waiting to get my new labs.

wendythemom profile image
wendythemom in reply to rabbit01

My kidney problem in from Alport Syndrome. It is a rare genetic mutation.

My doctor is testing me for that. Can you tell me what your experience is.

If you are on Facebook I would recommend you join a support group for Alport Symdrome. There is also Alport Syndrome Foundation. They have many resources. Come join us on the Facebook page!!

Thanks Wendy. Not sure if I have it yet. I do have ckd 3B. Changed my diet and has not changed my ckd numbers. Good luck on your journey I know it can be scary, I'll be thinking of you and praying for the best possible outcome. Let us know what's happening, this site has been helpful and encouraging.

Try dandelion tea as beverage and cabbage only as your vegetable

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