Nephrotic syndrome

[SweetyPie]

Anyone here have/had nephrotic syndrome? If so, what age did it start and when did you start dialysis?

[lulu836]

Hi ...... take a look at https://g.co/kgs/CP7RsZ

[SweetyPie]

I have nephrotic syndrome so I already know all about it. I wanted to know people who have it whats their situation and see id i could relate.

[cassandra]

Hi Aaisha I had NS when I had my own kidneys when I was 18. I lost lots of protein in urine. The learned ones thought it was caused by something that needed chemo, followed by an awful lot of corticosteroids and Indocit etc. Spent a lot of time ( 4 months) in a little hosp, than got thrombosis in both legs, moved to huge hosp where the learned ones gave me too much heparine so I got a brain haomorrhage and woke up after a bilateral nephrectomy as the protein loss caused all my musscles to be 'eaten' by my 'body' including my heart muscle.


I sincerely hope you can not relate.


Love, Cas

[SweetyPie]

Im so sorry you had such a rough journey. I cant relate to your situation i feel very bad though. I was diagnosed at age 4 and i was treated with steroids. Doctors thought this would do the trick but over the years my kidney function got worse. At 13, my dad donated his kidney to me but it lasted only a year because NS attacked my new kidney. It was devestating. Been on dialysis since with other surgeries here and there. Was on pd for 6 years and hemo 1 year.

[MooseMom]

"Nephrotic Syndrome" is an umbrella term for any condition that damages the kidneys, the result being proteinuria, high blood lipids, etc.  For example, FSGS is a nephrotic syndrome.

I was diagnosed with FSGS/nephrotic syndrome at the age of 33 after I had my son.  I may have had it earlier than that but was asymptomatic.  The only reason I was diagnosed at all was because I was hospitalized with pre-eclampsia.  The proteinuria did not subside one I had my baby, so the docs suspected an underlying renal disease.  After a biopsy, I was diagnosed with FSGS.

I was monitored but did not begin active treatment (cyclosporine) until I was in my fifties.  I was "in remission" for 8 years and received a pre-emptive transplant after having a fistula and being on the waitlist for 2 years.

Do you have any specific questions I could answer for you?

[SweetyPie]

There's no known cause for Fsgs. I was diagnosed with that.