is this just for transplant people

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is this just for transplant people

Postby Greylie » Sat Oct 27, 2012 5:03 pm

Hi,, I just signed in to this forum because my dr told me my kidney was not doing well and that I should get off my arthritis meds. My number was 48 down now from 52 but there was not problem in the urin yet.... what I am looking for is not to get worse and I think I need a kidney diet... this could help me in the long run... but I have not found anything. My dr thinks that I should go back and see her so she can check again but I would like to help myself already. Thanks for your help..
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Re: is this just for transplant people

Postby Duker5 » Sat Oct 27, 2012 8:12 pm

Has your doctor referred you to the hospital renal unit and done blood tests that confirm impaired renal function? If not I'd strongly suggest you ask to be referred if the blood tests did indeed show reduced renal function.

What did you mean when you said your number had gone from 48 down from 52?
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Re: is this just for transplant people

Postby Greylie » Sun Oct 28, 2012 1:01 am

when I looked at the bloodtest it says that GFR 60 plus is nsormal. A year ago I hads 52 GFR and this year it was down to 48 and my dr was concerned but she said that the kidney specialist would not do anything anyway.But I think I may be delaying getting worse if I could have a proper diet that does not hurt my kidney but I could not find one on the internet.
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Re: is this just for transplant people

Postby Duker5 » Sun Oct 28, 2012 1:11 am

Gfr 60+ is perhaps normal, a Gfr of 100 on the other hand is definitely classed as 'normal' let's say your gfr was 60 for example you can see here http://www.renal.org/whatwedo/Informati ... -2CKD.aspx that you'd potentially be at Stage 1-2 of CKD (Chronic Kidney Failure) BUT I can't stress enough that you need to go to your doctor and ask (tell) them you want referring to your local renal unit (usually in the hospital) as when I was diagnosed my gfr was 46 and you've said yours is 48 so not much more than mine at diagnosis..

I had a biopsy in June this year and it showed I have CKD, this was after I was referred to my renal unit.

So take my advice and please get referred as they can also help you with dietary needs if they deem it necessary.

Also for your doctor to say they weren't concerned at a gfr of 48 is rather strange to me, as mine was 46 and I got referred, so I would most definitely make sure you do get referred as your dr saying a kidney specialist wouldn't do anything anyway is absolutely untrue, a doctor is a doctor, a kidney specialist is exactly that and only they can tell you if they'd do anything, it's not your doctors call as it's your body not theres.

Please keep us informed how you get on.

Oh forgot to say this forum isn't just for transplant patients, it's for ANY and ALL people suffering with any form of kidney disease :)
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Re: is this just for transplant people

Postby ives » Sun Oct 28, 2012 1:14 am

I might be talking out of my behind here, but to give you an idea of the sort of dietary restrictions they put you on when your kidney goes kaput:

Try to avoid salty foods (be sure to keep below the 6g of salt a day amount that is recommended), and also try to avoid potassium and sulphate rich foods - if you give that a google, it'll give you an idea of what sort of things as kidney has trouble with.
I keep an online journal. I was going to call it 'Diary of Courage' but I settled on the Devil Kidney.
http://devilkidney.tumblr.com/
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Re: is this just for transplant people

Postby Greylie » Sun Oct 28, 2012 1:38 am

Thank you. I will talk to my dr and hope she will refer me to a specialist.
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Re: is this just for transplant people

Postby Duker5 » Sun Oct 28, 2012 6:09 am

Well if she doesn't then I would strongly insist you tell her that you want a referral, because as I said it's your body and only a kidney specialist will be able to tell you if they won't do anything, and to be frank that's highly unlikely.

Don't take no for an answer! It's your health at stake not your doctors.

Keep us informed :)
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Re: is this just for transplant people

Postby Greylie » Sun Oct 28, 2012 4:16 pm

OK I will.... she also said that my urin was Ok... no protein in it, I remember when I was pregnant I had protein in my urin.... maybe I should not be surprised that I have kidney problems now.
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Re: is this just for transplant people

Postby Duker5 » Sun Oct 28, 2012 7:38 pm

Having no protein in your urine is a good thing! So that's okay, but still make sure you get referred to the renal unit at hospital so they can check you over, that's the only way you'll know if your 'okay' or not! Your doctor can't make that call for you. As I say it's your body.

And having protein in your urine when pregnant doesn't mean you should think along the lines of maybe you shouldn't be surprised that you have kidney problems now, and don't be so negative, either now or in the future, you don't know for sure you conclusively have kidney problems so please get referred to the hospital and let them check, you might be worrying for nothing?

Either way it's best to get checked out :)

Keep us informed please.
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Re: is this just for transplant people

Postby Greylie » Tue Oct 30, 2012 12:26 pm

Thanks..... I will keep you posted//////
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Re: is this just for transplant people

Postby Greylie » Sun Mar 18, 2018 11:45 pm

For some reason I could never get back in this forum but the last time they did a blood test it was 61...48 was in 2012 and in 2016 it was 43 then 59/57/60 and the very last one was dec 2017 and it was 61... I don't know if I can trust that but my next test will be in April.... I only take Tylenol but rarely.. I did not think that the numbers would get better again....Thanks for all the help
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