What caused your kidney disease?

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Re: What caused your kidney disease?

Postby lewis1980 » Fri Jul 01, 2016 6:52 am

Doolally wrote:Membranoproliferative Glomerulonephritis also known as Mesangiocapillary Glomerulonephritis. Or MPGN or MCGN for short. It is another form of nephrotic disease where the immune system is attacking the kidneys. I have it very aggressively so not a great candidate for a transplant as the disease will still be in my immune system and will effect a transplanted organ. I really need an immune system transplant!! I'm in stage five now after 14 years with the disease. Soon I'm going to be on dialysis for the foreseeable future unless they find a treatment that works for me (other than living on high dose steroids which I will not do!). The docs say that it was caused by a virus or infection but I have no idea what. I tested positive for Epstein Barr at the time I first got ill so they think maybe it was that.

Mine is similar to yours as it forms nephrotic syndrome, and again it is my immune system attacking my kidneys.

It's is called focal segmental glomercrosis.

I know you posted this years ago, but I have been given lots of treatment other than steroids. Unfortunately they have found I'm resistant to treatment.

They tried me on a form of chemotherapy which worked the best and controlled the swelling which was out of control.
And also tried me on a few immunosuppressants.
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Re: What caused your kidney disease?

Postby Celreilly92 » Sat Jul 30, 2016 1:24 pm

I'm not great with terminology either so sorry if I get some names/ info wrong.

I have PKD (Polycystic Kidney Disease), myself, my mother and 3 siblings all have it as well but my siblings will most probably live the rest of their lives without any hassle.

I was born with adult sized kidneys and 0 function; Thankfully I gained some and had a relatively normal childhood. I also have hypertension and have been medicated for that since birth.

I am now in acute renal failure and in the next few weeks I will be going for mapping for the fistula as well as discussing with my Dr about the catheter as I personally would prefer the peritoneal dialysis.
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Re: What caused your kidney disease?

Postby freddyy » Tue Aug 02, 2016 6:53 am


My diagnosis was "Interstitial Nephritis" which was, if I understood my doctor correctly, an autoimmune response that caused a massive inflammation and scarring/dying tissue.

That was 3 years ago, and they never found out the underlying cause. Suspicion points to either a urinary tract infection "wandering up to kidneys", or the fact that I had been medicated long-term with daily dosage of NSAIDs.

After my diagnosis I had 30% function left. In these 3 years it has gone down to 10%. Doctor said that normally people would recover from nephritis, but I was not so lucky.
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