I went to the neph doctor for the 1st time...ugh...a couple of questions

[tresa56]

She said I have stage 3a chronic kidney disease...The only thing she based it off of was egfr...I am not sure if other things need to be considered?

She is sending me for a ultrasound and said to come back in 6 months and didnt seem very informative or concerned...Is this normal? How often would do you think it is worthwhile to get a blood test for kidney function...My primary doctor would probably order it if I asked..I get tested for my thyroid every 2 months anyway..

And I forgot to ask...At this stage you think it would hurt anything if I had a few alcoholic drinks on occasion...I dont drink everyday.

She basically just said to watch my blood pressure and not to take nsaids..nothing about diet ect..I forgot to ask her for a dietician reccemendation.

[Blackknight1989]

Here is what the “official” literature says:

The only way to find out for sure if you have CKD is through specific blood and urine tests. These tests include measurement of both the creatinine level in the blood and protein in the urine. Kidney diseases are a leading cause of death in the United States. Early CKD has no signs or symptoms.cdc.gov › kidneydiseaseChronic Kidney Disease BasicsFeedback

[Bassetmommer NKF Ambassador]

If your doctor has put you at Stage 3a, then your GFR indicated it along with the creatinine level which was apparent in your blood workup. This is the time to make changes and stay at stage 3 a. She is right about no NSAIDS, drink water, and you are correct about seeing a renal dietician. All those things will help. There is a lot more to this but its best if you start looking and getting educated yourself. Start with the National Kidney Foundation website and spend some time learning.

Alcohol in small doses is usually ok. But remember, alcohol raises your BP. So.... weigh the need with the result.

And yes, most common for a doctor to diagnose and then send you on your way. That is because most of the things you can do are up to you to do.....like diet and lifestyle changes. Ask your primary to add a renal panel to your thyroid tests that you are already doing. It does not hurt to draw more often and keep an eye on the levels. You don't want to see a decline.

[tresa56 in reply to Bassetmommer]

Awesome thankyou. My BP is not exceptionally high.. Ive had to make sure it doesn't go to low since I lost a little weight . Is that the main concern with alcohol.. I'm going to a wedding at the end of the month and wanted to have a few drinks..I thought it might be ok if I had a glass or two of water in between. I will definitely talk to my primary about adding a renal panel and a renal dietician

[adamsmith1776 in reply to tresa56]

Oh drink now and then is not going to destroy you but I have gotten to the point where I have little interest. So yes we all break ranks sometimes. I forgot away avoid pain killers, yes indeed avoid.

[KajNybom in reply to adamsmith1776]

I meet with my doc on July 5 and was going to ask him the same question about alcohol. Will keep you posted.

[tresa56 in reply to KajNybom]

Are you in around the same place as me? 3a? Keep me posted and good luck

[adamsmith1776]

Similar story for me. I went from 3a to stage 2... Lose weight, drink lots of water ( I like mineral water, no alcohol, No Sugar, no processed/canned/boxed foods, no seed oils (olive, avocado and coconut are good- extra virgin Olive oil everyday (make sure the label has a lot and harvest date to be sure it is not mixed with other oils) , no smoking, limit meat and go plant based most of the time, no diary and reduce salt. Always check labels. Exercise in some manner everyday. I vary between walking, strength training, swimming, and yoga every day. Vitamin D and Magnesium levels matter. I read Lee Hull's book on stopping CDK. Whether people agree with him or not it has a ton of studies and useful guides. It sounds like a lot but it is easy after a while. I learned to cook Indian food because of CDK. I wish you the best.

[tresa56 in reply to adamsmith1776]

We actually eat Indian food quite allot. I don't smoke and barely drink so that is no issue . I'm mostly vegetarian anyway.. The only meat besides fish I could ever stand was bacon and of course I stopped eating that. I started being super careful with my diet and tracking everything.. I'm currently using my fitness pal. Do you know a better one . Plan on getting the books soon..=)

[tresa56 in reply to adamsmith1776]

Or if curiosity.. How high into stage 2 were you able to get back to?

[adamsmith1776 in reply to tresa56]

66 from 52

[tresa56 in reply to adamsmith1776]

Nice..I hope i can do the same..I know it is only a few numbers...But stage 2 gives me much less anxiety...

[Bassetmommer NKF Ambassador in reply to tresa56]

It is just a measurement.... a number..... don't let it give you anxiety. If you are feeling good, then you are doing the right things. At the stage I am at, which is Stage 5 with a GFR of 13, I should be a real mess and I am not. I have a little edema in one leg and that is from injury and arthritis and no other symptoms. I work out twice a week and walk 2 miles most days. So hang in there.

[tresa56 in reply to Bassetmommer]

oh wow..ok that is great. I think I need to educate myself a little more and become confortable with the situation...The only symtom I think I might have is peeing too much..But I also drink alot so maybe its nothing..

[KajNybom in reply to adamsmith1776]

How did you do it? Diet and exercise? Can you recommend a book that will help with diet? Congratulations

[Honeylover in reply to KajNybom]

the book LEARN THE FACTS ABOUT KIDNEY DISEASE BY DR STEVEN ROSANSKY covers all the topics. He is often on DADVISETV on You Tube. I highly recommend this book.

[Honeylover in reply to KajNybom]

The book LEARN THE FACTS ABOUT KIDNEY DISEASE BY STEVEN ROSANSKY IS EXCELLENT. He is often on the DADVISETV YOU TUBE CHANNEL.

[Miss-guineapig in reply to adamsmith1776]

Thats very interesting, as I thought that could not happen xx

[S_dillow]

get a different doctor

[tresa56 in reply to S_dillow]

How should have this gone?

[S_dillow in reply to tresa56]

one your doc should have taken more tests to rule other things out.if you are confirmed diet,exercise and anything else you felt necessary to ask should have been answered.egfr is only one way.be your own advocate.research read and ask so many questtions your nephrologist will cringe.

[tresa56 in reply to S_dillow]

They are doing a ultrasound of my kidneys next week.. They did a bunch of blood tests before the appointment and a pee test....the only thing I failed was creotine and egfr..Everything else was in range..Any particular things they should rule out and I should look into or any particular tests I should be sure to get?

[bumblebee_tuna in reply to tresa56]

The reason the doctor is not that concerned is because you don’t have protein in your urine.

[tresa56 in reply to bumblebee_tuna]

So does that mean my ckd isn't as bad or I was not diagnosed correctly? Just trying to understand.

[bumblebee_tuna in reply to tresa56]

Not as bad unless they find something in the ultrasound or the next few blood tests show a consistent decline. Just live your life as usual (avoid the stuff that already mentioned NSAID and red meat). Next time you see your doctor come in with your questions. Also ask if you should be on any medication and if not why.

[tresa56 in reply to bumblebee_tuna]

The only thing I think I'm on for that is losartAn.. But now I have to watch that my blood pressure doesn't get to low lol.. Apparently kidneys don't like that either

[bumblebee_tuna in reply to tresa56]

Yeah that is standard of care (Losartan). You can also ask about a medication called Farxiga.

[tresa56 in reply to bumblebee_tuna]

Definitely will.. And ice been watching salt.. I'm confused if I need to watch potassium and phosphate because my levels were fine.. But I don't want to damage my fussy little kidneys any more

[bumblebee_tuna in reply to tresa56]

You don’t need to watch any of that you still have plenty of kidney function. If your blood pressure goes to low, why avoid salt l?

[tresa56 in reply to bumblebee_tuna]

It was always low normal until I developed thyroid issues last year..I haven't totally been avoiding it.. Just trying to eat healthy.. Nothing processed.. Only going out maybe once a week ECT.. And I've lost a few pounds.. So I think that has lowered it a bit.. what I'm guessing is if I lose a few more pounds they might have to lower the dose.. More like low salt than no salt..

[KajNybom in reply to S_dillow]

I agree. My doctor ignored me and would not take my phone calls when I saw the diagnosis on the portal. Get a nephrologist and get better care. We deserve answers.

[KidneyCoach NKF Ambassador]

Check out kidneyschool.org

[nonna70]

When my neph met me, he said "You have a lot of questions." Now he just answers them.

[tresa56 in reply to nonna70]

What rubbed me the wrong way I think is I just saw the assistant or whatever. I won't meet the doctor till next time . However I'm sure they charge my insurance full price.

[Bet117 NKF Ambassador]

Agreed on many areas. Unfortunately, there is no cure for kidney disease but through dietary lifestyle changes, exercise and medication the goal is to contain it and stop progression.

Seeing a renal dietician is excellent as they will review your labs and make food suggestions that are both appetizing and nutritious.

Educate yourself as patients need to understand what's going on and advocate for yourself; asking questions.

Review labs, checking off any areas which flag below or above the ranges next to your results provided by the lab and ask your doctor about it and what can be done.

You don't flunk an area, if your tests show elevation or decrease then it's an area to watch.

If you are uncomfortable with a particular doctor, don't hesitate to get a second opinion.

Stay positive as this is a process.

nephcure.org/livingwithkidn...

[Avenger]

sounds the same for my care. GFR. Is a big guide. I search the internet and read a lot. Food especially. My GFR got real low suddenly, I got a lot of calls and instructions . You have to ask, at least that’s what I learned.