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Early CKD Support
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Focal Segmental Glomerular Sclerosis (FSGS)

Hey Everyone

I had a biopsy about a week ago and I was diagnosed with this FSGS disease. If anyone knows anything about it, please let me know. I see my dr Monday to get on corticosteroid medicine hoping that will help. Thank you and God Bless

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Do try going to the Kidney Care UK FB page. I’ve used it lots after being diagnosed with kidney problems and it’s been brilliant. Keep well x

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I was diagnosed with FSGS back in 1992. Back then there wasn't a whole lot they could do to prevent progression. The most important thing is to make sure that you keep your BP under good control. Many on this site have had very good luck following a renal diet. When you see your nephrologist ask for a referral to see a renal dietician.

For me, by 1998, I was put on the transplant list and by Oct 15th 1999 I got the call that the transplant center had a kidney for me. It was a huge success! My creatinine is a steady 0.9 and am living well at 19+ years post transplant. My native kidneys continue to get scarred inside and have shrunk to the size of golf balls. No sign of FSGS in my transplant.

Keep well, let me know if you have any questions that I could help with.

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Thank you so much for your story. That is great. This has really helped me 😊

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What where your numbers in 1992 and how much protein leakage?

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I really don't remember how much protein I was spilling in my urine back then. I just remember that was one of the things that helped diagnose me as in kidney failure. By looking at some of the records I kept, my creatinine at that time was around 1.9 - 2.1. This was 1992 and was sent for further testing to find out what was going on. They did a renal arteriogram to see if there was a blockage somewhere that could be repaired. When that was normal they did an ultrasound with a kidney biopsy. At that time, my left kidney was quite a bit smaller than my right. So the biopsy was done on the right kidney, the one that looked healthier. That is when they found that I had FSGS. Since I am not diabetic and really had no other health problems, the doctors found it related to a strep infection I had when I was 9. About 2 months after the strep, I wound up in the hospital with nephritis - an inflammation in the kidneys. I remember that I was on bedrest because even at age 9, my blood pressure was too high. I missed over month of school but then was fine. Had no more problems till 30 years later 1992, when my BP was out of sight and it prompted doctors to start looking at a kidney issue.

I am sure the doctors started you on steroids to slow down the disease and hopefully prevent some of the scarring from happening. Did they tell you how they thought you got FSGS?

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Don't know that I have that, but I am spilling some protein in the normal range under 30...….I just was thinking from your post that your kidney failed was from spilling protein and that causes scarring and that caused the failed kidneys. Am I reading into this wrong?

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So they think the damaged to your kidneys was back when you were 9 years old, so do you think you could have been spilling protein for a very long time?

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I believe so. The damage and scarring probably got worse with time. My first sign of CKD in 1992 was very high BP and then the rest of testing started.

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What stage were you in 92 ?

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I am not sure the stages were well defined then. I never knew what stage I was at.

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There is usually something wrong in the filtering units within your kidneys that causes the protein to spill into your urine. Not the other way around. Something damaged your kidneys and that is the cause of your protein. My kidneys were damaged by the strep and that was the cause of my FSGS

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I have read post that suggest that the protein leak will cause further scarring and further damage and then I have read conflicting post. Confused still

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I was always told that the filtering parts of my kidneys were damaged. Because of this my kidneys spilled protein

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Hi,

FSGS is where microscopic scarring of the kidneys due to damage to the glomeruli (filtration system) occurs that can only be diagnosed under a microscope, after a biopsy. Here are two links to more information about FSGS:

Edinburgh Renal Unit: edren.org/ren/edren-info/fsgs/

Kidney Patients UK: kidney.org.uk/assets/Upload...

Best wishes,

MAS Nurse and Moderator

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At the moment I’m reading a book by Lee Hall, which might be of interest to you.

“I was diagnosed with an incurable kidney disease(FSGS) in 1998 after four years of symptoms. 2019 marks my 25th year living with kidney disease.”

stoppingkidneydisease.com/

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Thank you.. I am very interested in reading this

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