FSGS

[Hannah7622]

Hi everyone,

In October 2020 I was diagnosed with stage 4 CKD, the cause most likely being secondary FSGS also causing high blood pressure. I am looking to meet people who are living with a similar diagnosis.

Thanks

Hannah

[Superman89129]

Hi Hanna

I’ve had FSGS since 2004. Mine was very aggressive and had a living related kidney transplant in 2006. Unfortunately FSGS can and did come back in the transplant kidney. For the last 14 years I’ve been on dialysis

A great source for information is the following nephcure.org

[Hannah7622 in reply to Superman89129]

Hi,

Oh no I am sorry to hear that, how do you find living on dialysis?

[Superman89129 in reply to Hannah7622]

Early on I had a hard time adjusting. Overtime I’ve learned to adapt to being on dialysis. Currently I’m doing well. I’m getting good treatment. I exercise on a regular basis.

[WYOAnne NKF Ambassador]

Hi Hannah and welcome to this wonderful site!

I was diagnosed with FSGS through a biopsy in 1992. Mine was due to a strep I had when I was 9 years old. A couple of months later I was in the hospital with nephritis. Everything was fine until 30 years later (1992) and was in kidney failure. Was added to the UNOS kidney transplant list in 1998. It was October 1999 that I received my life-saving transplant from a deceased donor. I am living strong 21+ years later. And for me, there is no sign of FSGS in my transplant.

[Hannah7622 in reply to WYOAnne]

Ah wow that is brilliant news! I am glad to heard of a success story!

[Kindsong]

Hi Hannah, Welcome ! I had a kidney biopsy in July 2020, and was diagnosed with FSGS and two other kidney diseases. Mine is caused by Sjogrens Disease, an autoimmune condition that can be systemic. I am still on my journey, having an apparently agressive and complicated case. I have gotten Rituxin and Cytoxam infusions . Lots of people with FSGS do well on Rituxin infusions. I am also on a strict renal diet...I had been eating all wrong before ! For me, it has been about focusing on all the things I CAN do to make life better. Best of luck.

[Duke12- in reply to Kindsong]

My hubby has fsgs also. He did not respond well to steroids,retuxin... what foods are best for him? He is running to the bathroom all most as soon as he is done eating.

[Hannah7622 in reply to Duke12-]

May I ask is he vomiting or getting a bad stomach? I find my stomach gets super bloated and hard.

[Kindsong in reply to Duke12-]

I am on a strict renal diet, created with my specific labs in mind. I've learned alot about how my body is processing potassium and phosphorous. And...it's a much broader diet than it used to be, I have alot of variety to choose from. The consultation I had with a renal dietician was so helpful...I really sropped stressing so much when I had a list of ok foods in hand. Good luck to your husband, I know this isn't any fun !

[Hannah7622 in reply to Kindsong]

Sorry to hear this but I am glad to hear that you know what food is good for you now. I am still struggling with my diet too.