Did not know: I found out last month (... - Early CKD Support

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Did not know

Amcor profile image
3 Replies

I found out last month (5/2019) that I have been in stage 3 kidney disease since 2012. My ob/gyn asked me about it when looking over my chart. I told her I didn’t know about it...so she emailed my doctor to see if it was an error and that’s how I found out it was true! I remember years ago my doctor (from the city I lived in at the time) told me my kidney function was low and said to drink more water. So now I just looked over my kaiser medical records and saw that I was given regular blood test monitoring my kidney function ( along with other tests I regularly had) back to 2012 showing I was in stage 3. I was never told that diagnosis or what I could do about it. Pretty upset about that! And when I moved to my new city 1 1/2 years ago my new doctor at kaiser never mentioned it or asked about it. So I don’t know if all these years I could have been doing things for my health to help or hurt my condition. I never had any kind of symptoms all these years but interesting enough 2 weeks after I found this info out my ankles and feet have been swelling so much that sometimes I can’t put shoes on. This has never happened before. I emailed my doctor with pictures and he did not seem concerned at all! He just said , “ yes that is edema...put your feet up and refrain from salt. “ but in reading about CKD I find this isn’t a very good sign. Should I be concerned?

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Amcor
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MAS_Nurse profile image
MAS_Nurse

kHello Amcor,

Welcome to our community. Your concerns about not being aware of your diagnosis of Stage 3 CKD are founded. However, now that you do know, there are measures you can take to maintain your kidney health. Here is some useful information about CKD that should help you:

Edinburgh Renal Unit: edren.org/ren/edren-info/ck...

Kidney Research UK:

1) kidneyresearchuk.org/health...

2) kidneyresearchuk.org/health...

You should have a serious chat with your doctor and ask for a referral to a specialist nephrologist (Kidney). At stage 3 you won't generally feel unwell. Maintaining a healthy lifestyle, a balanced diet, reducing sodium, blood pressure control, keeping active are all important. Have regular blood tests to check your electrolytes levels, Glomerular Filtration Rate (GFR) etc is important. Check out the websites above for more information on blood tests, renal diet, etc.

Do keep in touch and let us know how you are doing. Ok, folks please pop by and welcome this new member onboard.

Best wishes,

MAS Nurse and Moderator

orangecity41 profile image
orangecity41

i had similar experience on the decline of kidneys. It was not until after I moved and new Doctor diagnosed me. Previous Doctor never mentioned a problem either. Maybe some Doctors do not bother until you reach level 4? I know that on Medicare I cannot get a referral to nephrologist until reach level 4.

Andreli profile image
Andreli

I am really sympathising with you. From my experience... doctors know nothing about IgA nephropathy.

I was begging my nephrologist for Prednisolone, yet even my eGFR was declining fast and in 3 months I got to stage 4B, he blankly refused. I just went to another GP and asked him for script and I got it. My eGFR was 18 and in a week it’d almost doubled.

You be better of to do your own research. Do not rely on doctors, except for getting blood test referrals.

God bless,

Andre

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