Looking for hope

[Downinil]

I was recently diagnosed with stage one chronic kidney disease and in need of advice as well as information relating to it. Thanks for reading.

[bumblebee_tuna]

how old are you (roughly)? Stage one is usually nothing to worry about. Do you know if you have protein in your urine??

[Downinil in reply to bumblebee_tuna]

Well my Gfr is 58.

[bumblebee_tuna in reply to Downinil]

That’s not stage 1, that’s border line stage 3a. Are you diabetic?

[KajNybom in reply to bumblebee_tuna]

You are so lucky you caught it early. Get a nephrologist and have them explain the numbers from your blood count. That is the real tell. Find someone you trust and know we are all in a similar boat and we will pull you through this as we all work together.

[Downinil in reply to KajNybom]

I am tremendously grateful for your support. Thank you so much.

[Downinil]

That’s what I thought. I thought it was stage 3. I can’t believe they’ve got it listed as stage 1 on my medical records.

[MinnadeParis in reply to Downinil]

I agree uts a shock to get ac CKD diagnosis when nothing else is wrong. That’s my story. My long time pc retired and the new young Dr asked me what I was doing about my CKD. I looked him back and said I’m fine in pretty good health low BMI, no diabetes no heart issues, just some old age pain. Well I was 3b w a eGFR of 32 and creatinine of 1.57. I had never hear those words before. He suggested a nephrologist. In the meantime I was anxious and depressed.

My suggestion to you is get a copy of your labs. Check for the indicators > potassium phosphorus A1C, protein in urine total cholesterol . There is a thorough test that a nephrologist can run. If you have older lab results compare….when did these indicators rise or fall, what was going on in your life at that time. Follow a renal eating plan, but most important eat your labs and check on how much water you should drink a day.

Very important you don’t say whether you have hypertension bc this can be key to CKD.

For me it was the NSAIDS Aleve mostly for my sciatica and occipital neuralgia

Stay organized advocate for yourself and let us know how you are doing

[Downinil in reply to MinnadeParis]

Thanks. I did get my labs and noticed they weren’t normal so I asked the doctor who then told me that yes it is cKD. I do have high blood pressure but it’s under control now. I was prescribed Naproxen at high doses for many many years. Off of nsaids now. I was wondering if that played a roll. I appreciate all of your support.

[bumblebee_tuna in reply to Downinil]

Well, long use of Naproxen (NSAID) would do it. The good news is that your CKD is secondary, you still have plenty of kidney function and most likely have nothing to worry about, just stay off the pain killers (at least not the NSAID ones). You probably have to be monitored once a year, keep blood pressure under control to preserve the kidney function. Some people choose to follow a kidney friendly diet to help the kidneys recover.

[Downinil]

No one has diagnosed me as diabetic to my knowledge. I asked if I had diabetes because my triglycerides were elevated (don’t remember the number right off hand) they told me to just avoid white bread and pasta.

[ling in reply to Downinil]

Triglycerides is to do with your cholesterol levels.

For diabetes, the test to get is the Fasting Blood Sugar Test.

In CKD, its important to know if you have diabetes or pre-diabetes.

Best wishes.

[jodaer in reply to ling]

Actually the test for diabetes is the A1C , You don't need to fast for it. It will show where your blood glucose levels have been for the last 3 months.

[ling in reply to jodaer]

The HBA1C is another test for blood sugar level. As you say, it shows blood sugar level in the last 3 months.

The Fasting blood sugar test is for blood sugar level at that point in time. After reading in detail about blood sugar tests, the conclusion seems to be that the Fasting blood sugar test gets a more accurate picture of blood sugar levels.

And now after observing my mom's (she's 88) blood sugar spikes which mainly occur in the early mornings, it does make sense that the Fasting blood sugar test could be a more accurate picture of blood sugar levels since the Fasting blood sugar test is done in the mornings after 8-12 hours of fasting.

[bumblebee_tuna in reply to ling]

btw, a1c numbers are sometimes skewed when you have CKD because your red blood cells are typically smaller and have shorter lifetime.

[jodaer in reply to ling]

I guess it would depend on what the doctor is looking for in her blood work. But, if she has diabetes the fasting glucose does NOT tell the whole picture. I see where you are coming from on the fasting glucose test but are you aware of the Dawn Phenomenon? That is when the blood glucose spikes up even though a person is fasting. I would suggest you check that out.

[Tolmezzo]

I've seen some reply before this comment. First you need to understand more about your disease. Don't mind doctor which are not proactive. You must to be your best advocate. This is your life and from stage you are there's really lot of possibilties to avoid bad consequences. Start act now. Do not wait. It's important to understand what it's causing your decline. Than you can set your strategy. You have all the time don't desperate or be depressed. rgs

[nonna70]

Go to kidney.org (and other sites) and soak up all you can about CKD. Many of us have had the same experience.

[Bunkin]

I was shocked when I learned by accident. One thing I can tell you is do your research. Doctors will let this slide and say nothing! There are things you can do to take the bull by the horn and slow the progression of the disease.,

[Vcr1406]

Most doctors will not refer you to a nephrologist until you are at least in stage 3b. In fact, the National Kidney Foundation does not recommend a nephrologist until you are at least in stage 3b. What calculator is your lab using? Does it differentiate between African American and Caucasian races? If so, the calculation of gfr is not accurate and not in line with what NKF recommends. Go to National Kidney Foundation website and use their gfr calculator. Enter your creatinine from your lab results, age, and sex. Your gfr will be higher. There is also another way to compute it. On the lab results if they are factoring in race, it will give 2 gfrs. Average the two numbers and that will give your true gfr at the time blood was drawn. If your gfr is 58, you are in really good shape. Remember many things can make it lower. Hydrate and reduce protein and try to avoid NSAIDS. Most of all, stop worrying and don’t listen to fear mongers. Talk to your doctor first not folks on a CKD forum. No one on here is a professional. Good luck and God Bless!

[KidneyCoach NKF Ambassador]

Check out kidneyschool.org

[userotc]

As I'm sure you've already gathered, medics are generally not particularly helpful in diagnosing or treating relatively early stage ckd. Sad but true.

The good news is you can manage it generally just via nutrition and lifestyle. For example, my mum (age 67) has almost doubled he eGFR to around your current figure n ~6y and its been quite stable for a while 🤞. Retests soonish.

She did this solely via a Nutritional Therapy protocol, If you feel you need such support, I can send details of qualified NTs.

[Downinil in reply to userotc]

That would be appreciated. Thanks.

[userotc in reply to Downinil]

Theres a couple of lists below to choose from. Most likely operate online so imo location less of an issue than relevant expertise eg renal. Id recommend CNHC, where possible.

practitioner-search.bant.or...

theanp.co.uk/member-directory/

Good luck.