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Author Topic: Nephrotic syndrome  (Read 2815 times)
SweetyPie
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« on: March 07, 2018, 03:54:07 PM »

Anyone here have/had nephrotic syndrome? If so, what age did it start and when did you start dialysis?
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lulu836
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« Reply #1 on: March 07, 2018, 08:59:22 PM »

Hi ...... take a look at https://g.co/kgs/CP7RsZ
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Of all the things I've lost, I miss my kidneys the most.
SweetyPie
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« Reply #2 on: March 08, 2018, 08:47:37 AM »

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.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #3 on: March 08, 2018, 09:32:20 AM »

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
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
SweetyPie
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« Reply #4 on: March 08, 2018, 10:09:41 AM »

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.
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MooseMom
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« Reply #5 on: March 08, 2018, 10:23:27 AM »

"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?

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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
SweetyPie
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« Reply #6 on: March 08, 2018, 03:01:41 PM »

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