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Kidney Disease

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Calm2 profile image
17 Replies

Hi again, I know have results that I can share from recent blood test. Any advice would be great. Sodium 142 normal range Potassium 4.2 normal range. Creatinine 102 outside normal range , eGFR (CKD - EPI ) 1.73 49 unit = * = m *2.

Hoping someone can decipher this?

Thanks 😊

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Calm2 profile image
Calm2
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17 Replies
Badger2024 profile image
Badger2024

looks like you have an eGFR of 49 which could put you at CKD3a. I say could and not would as there are many factors to get get that number. The e is an estimate using your creatinine. Creatinine can be raised for many reasons including exercising before a test and even high protein diet. At 102 yours isn’t very high. To diagnose CKD you need three blood tests done within three months. The earlier CKD is picked up the better as it can be very manageable. The nephrologists always like to know why kidney function has deteriorated so like to do more tests to rule things out. No need to worry about this. It’s just routine. As you’re in the UK you will see people post results in a different format. I’m in Australia. Ours are different again yet the basic number is the same.

Have a look at this

kidneyresearchuk.org/kidney...

Calm2 profile image
Calm2 in reply to Badger2024

Thank you that was interesting. I see what you mean about my eGFR being 49 that appears to put me at stage 3a ? The creatinine says it’s above normal too. But all the others ok. I do think the GPS should tell us more like how long have I had this as every blood test I’ve had I ring and am told they are normal no further action needed but this one I feel does require further action so I guess just wait it out for ultra sound? Thanks for your response 😊

Badger2024 profile image
Badger2024 in reply to Calm2

What I think is so ridiculous is that if you have an eGFR of 60 isn’t within normal limits whereas you actually have stage 2 CKD then and aren’t told. As soon as it goes down to 59 you are already stage 3A! My GP didn’t investigate for twenty months of me having an eGFR of 49, 52, 58 then 46 in the blood tests in that time. She had just advised me to drink more water. Had I known I would have altered my diet immediately. It’s great that you’re following up now. The first diet change is no red meat (includes pork) no added salt, no more than 2g of ‘hidden salt’ (read labels) and drink at least 2-3 litres of water a day. Also no dark colas

Donotknow profile image
Donotknow in reply to Badger2024

I was not told that I had anything wrong with my kidneys until I was already way below 60. I kept asking about it and they kept telling me it was OK and it 50, my GFR. Then I had my liver transplant and my kidneys took another hit so now my GFR was so low they put me on the Kidney transplant list. it came up and stayed up around 30 for a little while so they took me off the transplant list then it went back below 20 so they put me back on the transplant list. My doctor says I’m holding my own right now, and I’m not on dialysis, yet. My whole point to respond and to your comment was I agree, I don’t know why they wait until your kidneys are so bad before they tell you anything when you could probably prevent them from getting that bad if you just knew.

userotc profile image
userotc in reply to Donotknow

It can only be the arrogance of medics! The "WE cant generally do anything so dont tell them" approach. Criminal! Same with my mum, not told she was ckd 3 until dad discovered by chance and that likely caused her kidney cancer.

OldTownhammock profile image
OldTownhammock in reply to Donotknow

I believe the reason they wait is the insurance companies don't want to pay for early treatment, not even a dietician until stage 4.

Calm2 profile image
Calm2 in reply to OldTownhammock

That would be in USA I presume?

OldTownhammock profile image
OldTownhammock in reply to Calm2

Your presumption is correct. I just moved back to North Carolina from Florida. Medicare won't pay for a renal dieticians until stage 4.

Calm2 profile image
Calm2 in reply to OldTownhammock

We don’t have that particular issue in U.K. having the NHS some will say we should pay for insurance and others think NHS is the way to go.

Pisces101 profile image
Pisces101

You should also know your albumin-creatinine ratio, a urine test. That is one of the most important predictors - and if it’s too high, it can be reduced. Bring a urine sample and ask for that test.

Calm2 profile image
Calm2 in reply to Pisces101

Hi yes I have to do a urine test and take it in when I have another blood test in March. It’s all very scary really

Pisces101 profile image
Pisces101

please breathe! I know that’s not easy - I saw myself chained to a machine by Dec when I learned I was at 3a in August/Sep last year.. I am much more relaxed now.. albumin levels are very low and everything else is normal.. with more water, no red meat and more plant based, I was up to eGfr 66 last time. New tests on 5 March and I’m hoping I’m still up there! Have watched some of the DADVICE episodes on YouTube with nephrologist Rosansky. Very informative.

Calm2 profile image
Calm2 in reply to Pisces101

Thank you I will check that out 😊

Reese4 profile image
Reese4

Because of the way doctors handle (mishandle) it we tend to panic when left to figure things out on our own. My doctor never mentioned CKD to me but put it in My Chart for me to find. I got busy learning all I could. My point here is I want you and everyone being diagnosed with CKD to be cautious about the changes we make.

I increased my fluid intake drinking at least 2L daily. Then I experienced shortness of breath and found myself in the ER. Turns out I have diastolic heart failure which was causing me to retain fluids since my heart had a weakness preventing properly pumping it's movement of the fluids. I have no other symptoms, feel great but that was an eye opener for sure. Just make sure your heart is healthy before increasing fluids so all goes well. Doctor at hospital said not to worry about my kidneys, they're fine. I was eGFR 60 and creatinine was 1. Actually it had been that or nearly that for several years. Sometimes we jump to the wrong conclusions though I do encourage caution in both directions.

I also decreased potassium. Oops. Again I got in trouble and had to increase it to return to normal. Now I try to be aware and combine differing information regarding both kidney and heart care. We're worth it, right?!

Genlady06 profile image
Genlady06

if your doctor says you have chronic kidney disease waste no time in finding a nephrologist. I’ve gone through two, both kept telling me my CKD was caused by an infection but in my heart I knew it was lithium. I have good radar and knew they were brushing me off. Third time is the charm. My new doc is fantastic but it did take me 8 months to get an appointment. I don’t know how medicine works there. I live in Raleigh NC and everyone is moving here so you have to wait a long time for a specialist. My general doctor has been really so helpful in addition. And you can ask anything here. This is my support group. Someone will know💪🏻❤️.

Calm2 profile image
Calm2 in reply to Genlady06

Hi, I keep seeing the word Nephrologist but never heard of it before. I just googled it and we have 647 here in the U.K. I guess because this kidney problem is new to me I’ve never come across the word. Thank you for responding and I will ask my GP if my next blood and urine test confirm CKD and the stage.

Tulum profile image
Tulum

Hi Calm2 I’m in the UK too and my experience of discovering I have CKD was similar to yours. People have mentioned nephrologists in earlier replies. Here in UK you are referred to nephrologist by GP. My referral was made not because I was 3a CKD but because there was consistent protein in my urine. It seems to me that a referral is not automatic at the early stages of CKD unless there are other factors in play. You can of course pay and see a private nephrologist. I ended up doing that as the wait on NHS in my area was crazy. After prescribing to control protein leakage, he referred me back into NHS.

The advice to eat to your labs is spot on. I find Plant Powered Kidneys to have great info. By following their info I’m maintaining my CKD at 3a.

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