Fsgs nephrotic syndrome. : Hi .. I’m new to this... - PMRGCAuk

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Fsgs nephrotic syndrome.

Aggielynne
Aggielynne

Hi .. I’m new to this .. last September I was diagnosed with nephrotic syndrome and high blood pressure.. after undergoing a traumatic kidney biopsy it was discovered I had stage 2 kidney disease.. fsgs .. I was put on 60mg prednisolone which was pretty awful ... my face ballooned and I gained 2 stone.. also blood pressure meds .. good news is I took my last steroid 2 weeks ago and I’m in remission! .. I actually feel like me again .. the withdrawals from steroids were awful but I got through it and I actually feel like a new woman! .. I need check ups every 6 mths at the moment and continue to take blood pressure meds .. but I am one very thankful lady that this condition was discovered and treated so quickly..,

14 Replies
PMRpro
PMRproAmbassador

I'm not sure you are where you want to be or thought you were - this forum is for the conditions PMR (polymyalgia rheumatica) and GCA giant cell arteritis) so I doubt any of us know much about fsgs nephrotic syndrome. We do know about high dose pred mind you - but we tend to remain on pred at some dose for several years.

Doesn't alter the fact I'm pleased you are in remission! Long may it last.

I have chronic kidney disease stage 3 and only found out because I have subscribed for on line info. No one mentioned it to me. When I asked my GP he said everyone over 60 or so has it so they don’t bother to tell them. He said he has it even. I am already on steroids.

HeronNS
HeronNS in reply to piglette

Why wouldn't a person be told? You need to have this information in case, for example, they want to do some sort of imaging which requires the use of dye.

piglette
piglette in reply to HeronNS

My GP said that so many people fall into that category that it just worries them and it would be too much work to let everyone know! I had imaging with media for my CT scan and survived. I think up to stage 3 does not normally need any intravention normally.

HeronNS
HeronNS in reply to piglette

I don't know what my stepmother's kidneys were like when she had imaging before a heart operation. That operation was successful but her life was ruined anyway because she spent the rest of it, over a year, on dialysis three times a week because her kidneys had been wrecked.

Rose54
Rose54 in reply to HeronNS

Hi

if you have blood test done and get copy of results it will say AKI Stage I think their are 5 stages 1 ok to 5 being serious

HeronNS
HeronNS in reply to Rose54

As far as I know her kidney function wasn't tested ahead of the procedure. This is several years ago. My parents had bad luck with the medical system in the US although my father was a practicing physician there for a number of years. He had lung cancer and the wrong side of his chest was opened before the mistake was discovered, so twice as long under anaesthetic and twice as much incision to heal. Later he was recovering from another operation and the guard rail of his bed was left down, he attempted to get up, fell and broke his hip and never really recovered. The nurse was sued for negligence (she'd been hired specially to be there with him) but because my stepmother was a well to do white woman she got no sympathy and the settlement was tiny, the nurse got off with a slap on the wrist. My stepmother in turn suffered this negligence re her kidney function on the part of the doctors. So both of them had a needlessly prolonged and distressing dying on account of "treatment" or lack of it in hospitals.

All of which is a long way of saying patients need to be told the results of tests, they need to be involved in decision making regarding their care, and in this day and age there is no excuse for doctors not to share all information in a respectful and compassionate way.

Rose54
Rose54 in reply to HeronNS

My God that's disgusting

I don't trust medical profession at all so that's why I check everything

Some year ago I had Gall Bladder removed overnight stay in hospital ended up total 4 weeks .

My Mum thought I was dying I was so ill .I was told nothing had emergency blood transfusion in the middle of the night.

Many years later I noticed AKI Stage 2 on blood test results when I asked GP I was informed that thay had nicked my Kidneys causing internal bleeding and blood poisoning I was never told any of this in hospital.

I totally agree that we should all be informed of any illness we have and given the choice of treatment we would prefer .

Only too often this does not happen I supported someone today who was receiving treatment but had no idea what for .

Thank you for sharing your horrific experience

HeronNS
HeronNS in reply to Rose54

Similar to the experience of a younger woman of my acquaintance who had a hysterectomy and sent home post-op on schedule although she complained things weren't right. She nearly died with a severe infection, would have left a husband and three young children, but her mother is medically savvy and took charge and made sure she got the care she needed. I think something had been left inside her at the time of the operation. The sort of thing you read about in the newspaper!

OMG is he serious? I’d want to know a lot more after that statement. My daughter’s father in law has function in a small part of one kidney and leads an active life. He told me that everything goes wrong at 60 - so far, for me, he’s been right.

I cannot imagine what feeling like me again would be like. So all hail to you for the encouraging story!

I have stage 3 kidney disease. I was informed by letter by a junior Dr. at my surgery. My usual Dr apologetic and said not to be too concerned! !!! This was about 10 years ago and it's still the same. So I just ask for check whenever having PMR bloods taken. Drink plenty of water. Kidneys apparently do a lot of cleansing over night so I'm up a few times but it's a small price to pay. It can't be reversed so I don't make it a priority worry in my life. PMR takes that at the moment. Imaging wasn't something I was aware of though. Amazing what we gleam from this site ☺

Wasn't aware!!!!

Are you still in remission?

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