Focal Segmental Glomerular Sclerosis (FSGS)

[aj2581]

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

[KatieRL]

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

[WYOAnne]

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.

[aj2581 in reply to WYOAnne]

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

[hankshardscapes in reply to WYOAnne]

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

[WYOAnne in reply to hankshardscapes]

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?

[hankshardscapes in reply to WYOAnne]

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?

[hankshardscapes in reply to hankshardscapes]

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?

[WYOAnne in reply to hankshardscapes]

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.

[hankshardscapes in reply to WYOAnne]

What stage were you in 92 ?

[WYOAnne in reply to hankshardscapes]

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

[WYOAnne in reply to hankshardscapes]

I was probably at Stage 3 when I found out in 1992. They did things a little different back then.

FSGS causes the filtering parts of your kidney - glomeruli - to scar. Due to the scarring my kidneys were not filtering right and were spilling protein. If I had not had a transplant when I did.....my kidneys have scarred up so much and have shrunk. They are the size of ping pong balls today. My transplant was in 1999.

[hankshardscapes in reply to WYOAnne]

Is the scarring from the protein spilling?

[WYOAnne in reply to hankshardscapes]

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

[hankshardscapes in reply to WYOAnne]

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

[WYOAnne in reply to hankshardscapes]

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

[Okidocki in reply to WYOAnne]

The hospital and ourselves believe that my husbands FSGS was also caused by a strep throat. Great to hear that your kidney is doing well and that you’ve had no reoccurrence.

[hankshardscapes in reply to WYOAnne]

What stage where you at in 1992?

[MAS_Nurse]

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

[jim102]

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/

[aj2581 in reply to jim102]

Thank you.. I am very interested in reading this

[hankshardscapes in reply to jim102]

Sorry I had to get away for awhile, so where are you now with your FSGS?

[aj2581 in reply to hankshardscapes]

That’s ok, so far they haven’t said anything about the FSGS they are just keeping an eye on the proteinurea

[hankshardscapes in reply to aj2581]

Sorry I meant that ? for Jim 102

[hankshardscapes in reply to jim102]

Can you tell me about your journey with (FSGS) and where you are now?

[aj2581]

I was just diagnosed about 3 months ago, the dr is just looking at my kidney function. They haven’t put me on any medication for FSGS so that’s pretty much it.