CKD

[Atomheart]

I've recently been diagnosed with Chronic Kidney Disease, mainly due to my high blood pressure which has now stabilised due to medication. Does anyone else have experience of CKD ?

[PMRpro]

Was that on the basis of blood tests including a figure for eGFR? (glomerular filtration rate). If so, what number went with it?

kidney.org/atoz/content/gfr

explains it though I'd dispute it was the "best" way!

It is possible it isn't as bad as you think - it isn't a real measure, just a guide suggesting if further tests are needed and CKD shouldn't be diagnosed until you have had 3 consecutive monthly abnormal readings plus some more accurate tests. eGFR can be affected by all sorts of things including a high protein meal the night before or being dehydrated (as most people are in the morning when fasting for a blood test). The real value is found by collecting all urine for 24 hours and taking a blood sample during that 24 hours. Plus you have to look at age - our GFR falls perfectly normally as we age so the eGFR might say Stage 3a but that is quite normal for your age.

Renal consultants were horrified when they heard it was to be quoted on all reports where it had been estimated - GPs and practice nurses have been known to scare patients by telling them they have kidney disease when they don't simply because they don't understand it.

[Atomheart in reply to PMRpro]

I have had at least 3 blood tests and my GFR levels were raised in all of them. My doctor has said stage 3a. I'm to have another blood test in February.

[lowraind in reply to Atomheart]

I would suggest that you learn all you can about ckd. You mentioned that your egfr levels were raised. When one has ckd, the efgr levels decline.

Resources:

• DaVita Kidney Disease and Dialysis Forums is well known for their recipes but they also have a forum for patients too.

• Renal Support Network provides many support and advocacy services including a phone support line.

• AAKP is a comprehensive resource focusing on the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.

• National Kidney Foundation provides a portal for patients too.

[Atomheart in reply to lowraind]

Sorry I meant to say my eGFR levels had reduced not raised.

[overnighthearingloss]

Kidney disease is something that many develop as they age but it is often something that people have when they die rather than something that kills them.

It's possible to live perfectly adequately with stage 3. If you are being monitored you should be ok. You may want to start taking a bit less salt both directly and indirectly but unless there are other worries you should be ok.

[1sam]

Hi. Not exactly my case, I have Lupus Nephritis ... were you diagnosed with LN before CKD? I assume you have SLE.

Lupus can affect kidneys (or any organ), but it took a biopsy to diagnose that lupus is why erythrocytes and leukocytes were showing in every urine test.

Talk to your rheumy and nephrologist about LN, you need to be sure your kidney disease is properly treated and to know if it is lupus related or not.

Are you taking immunosupressants?

My nephrologist gives me Cellcept, 1500 mg daily. I took steroids for some months but not now, just losartan.

My symptoms are well under control (blood pressure and water retention).

Eating low in salt and protein has helped me a lot, also keeping beans/soy/legumes at a minimum, same goes for coffee, tea and alcohol... red meat only twice a week, more than that and my ankles start swelling.

How about you? What makes you feel bad? What causes your urine to smell foul or to darken? My advice is to pay attention to your body and take good care of it adjusting your diet.

Oh, my nephro gave me a list of all the meds I should avoid (NSAID and flu remedies mostly)... talk to your Dr about this next time, mine gives the same list to all of his kidney patients.

Wish you well