Should I know my GFR?

[Maxed-out]

I have been diagnosed with FSGS for 11 years and whilst I consistently have significant proteinuria (3gr+) my consultant advises that kidney function is fine. I've never been given a GFR - should I know it?

[ladybird194]

Hi

Your GFR is only an estimate of your kidney function, if your consultant is satisfied that your function is fine, then I wouldn't worry.

GFR is also dependent on other various aspects, general health, age, weight etc

Do you have the Renal Patient View downloaded to your PC? (thats if your hospital runs this service). It is your blood results on the PC that are accessible if needed by any hospital you may be attending - when you have bloods taken, all results are put on there for you to see and they include your GFR

[cmcginily]

I am not sure how your doctor is assessing your kidney function, I expect you have had routine bloods done. Has your gp done a 24 hour urine at all? I am unsure what FSGS is so feel I can not really advise but surely if it has the risk of renal failure it should make sense to monitor your e gfr.

Best regards Christine

[Maxed-out]

Thank you both - i guess i am just curious that everyone seems to know their number! i have an appointment this week so will ask about gfr and the renal download system.

[claire12p]

Hi I was diagnosed with FSGS 15 years ago and I have never known my GFR, since my transplant I have concerned myself with my creatinine levels and possibly my Hb which I suspect your consultant is also more interested in at this time. If you feel you'd like to be more informed you must tell your consultant and ask him to explain things to you, maybe even ask him/her to write it down for you, when I was first diagnosed my consultant used to draw me pictures!!!! (not sure why I was 22 at the time, but it did help!)

Hope this helps

x

[derby24]

My surgery always give me a copy of kidney function tests, try a simple request.

May I ask for help - muscular cramps have increased significantly - I am stage 3 and can manage them during the day but the leg cramps at night mean I get very little sleep. My gp says she is unable to help apart from stretching exercises.

[wingsofadove in reply to derby24]

Hi. I have the same problem at Stage 3, my leg muscles go into total spasm, not easy to get out of it. When a particularly bad one wakes me or just comes when I move my legs and it goes on getting tighter and tighter I take a Quinine BiSulphate tab . I don't take them regularly as they can give you a nasty taste in your mouth...one occasionally seems OK. but ask your GP, they are a prescription medecine.

[wingsofadove]

Hi, I assume you mean scarring, which is also the problem with one of my kidneys which is enlarged as well. It's useful to know your eGFR which should be done with routine urine lab. tests. as a matter of course. It's very confusing to be told these things, high proteinuria, blood in urine etc., and your medic say that it's fine. i used to get the remark that the result was normal, and then was added the words 'For you, that is.' You need to be put in the picture and personally I think it's important to know everything you can about your condition. I always ask now, whereas I used to feel I would be thought a hypochondriac if I showed interest in my condition. I am sure that was only me though, my GP was kind.

Cheers.

[vaw777]

Yes definately.....vaw777