Diagnosed with early stage kidney disease, have ?s

[rchrist693]

Hi everyone,

I was just diagnosed with early kidney disease. The nurse called from the doctors office informed of this, said nothing else, and to come back in 3 months. With a family history, and being on a lot of medications/supplements, I am quite frightened.

But I am not sure if I should just skip going back to my primary care and just go to a specialist or back to the pcp.

I found my blood results on my own and don’t really understand them.

But the kidney values I think that matter are

Creatinine is 1.29

And GFR is 46

Not sure if I am okay to wait.

Any advice/thoughts. It’s scary to have someone just tell you something like that and not explain

Thank you in advance.

[Jayhawker]

First, do you have any idea how these labs compare with those you’ve had over the past few years?

Second, if there is a decrease that concerns you, you could ask about getting more labs run earlier than 3 months.

It may be tough to get in for an extra appointment right now with COVID 19, but I’d still call my PCP’s office to request both a follow-up lab and an earlier appointment.

My PCP said to me several times that they don’t tend to get too concerned until the eGFR falls below 50. Of course the other very relevant issue is your age. We all begin loosing renal function from age 40 on... So you have several things you need to talk about with your PCP with regard to your data.

Ultimately, I do think it’s important to see a nephrologist as early as possible. You may need to advocate strongly for that, especially with how overloaded our medical system is right now.

An eGFR of 46 is workable but it’s important to get appropriate care with the hope of improving it some or at least stabilizing it.

Jayhawker

[rchrist693 in reply to Jayhawker]

I can try to see if I can look for other labs. But this is the first time I’ve ever had anything showing bad kidney function and they just told me I am in early kidney disease, nothing else. I looked up the numbers myself.

Previous labs will show normal numbers.

I just turned 40.

Maybe I will try to call my PCP to refer me to a nephrologist.

My biggest concern is getting off certain meds, knowing OTC medicines, diet, etc. I have no idea about anything and they say kidney disease, no explanation, it’s scary.

[rchrist693 in reply to rchrist693]

Thank you so much for your response.

[Jayhawker in reply to rchrist693]

Yes, you definitely need an appointment with your PCP to discuss these concerns so you know, specifically, what to do to take care of yourself.

As far as ZOTC meds go, I use Tylenol only as needed but very sparingly. My nephrologist snd PCP have both said I can safely use regular strength Mucinex for colds. I use saline solution nasal rinse for sinus issues and allergies. And that’s it. I don’t take anything, even vitamins, without approval from my nephrologist first.

But we’re all do different; you really need to talk with your medical team to get guidance based specifically on your data.

Jayhawker

[KidneyCoach NKF Ambassador in reply to rchrist693]

Firstly I'd recommend going to kidneyschool.org and getting educated on basic physiology of kidneys and kidney function. This may alleviate many of your concerns/fears. Check out Nkf.org aakp.org to start they both have good reliable information. Blessings

[hecatecourt]

In the mean time prior your wait for an appointment just Watch YouTube videos from Dadvice by James there are ways to fight back.

[Hidden]

Hi and welcome to the community. It may be difficult at this time but my first action would be to find another PCP. There are five stages of CKD and you are in Stage 3. It is still not the time to panic because there is much you can do to slow the progression of CKD.

I'm going to give you several websites to help you begin to deal with this.

The first one will be kidneyschool.org where you will find a series of educational modules that will explain CKD and give you some excellent information.

The next one will be davita.com where you can find recipes for the foods to eat. Find a nephrologist and use the questions you have from those modules to ask questions you have. Also, ask the nephrologist for a referral to see a Renal Dietitian. Another question to ask would be is, "What caused my CKD?" The two primary causes of CKD are diabetes and high blood pressure. If you have either of those you'll need to get them under control.

Since you didn't mention anything about other health issues, I'd recommend going to drugs.com and list all of your medications and see if any interactions are discovered. You can ask the Medical Records office for any doctor you have gone to in the past for hard copies of your previous lab work. You might want to set up a spreadsheet for easier understanding of where you are. Across the top, list the doctor who ordered the test and the date. Down the left side list the specific test. In the corresponding box place the test results. If the hard copy show the value to be higher than the reference range then I highlight it in red. If it is below the reference range I'd use another color. This will help you find any trends and from that, you can ask you new nephrologist questions. To help you understand the tests better go to labtestsonline.org and once there go to their menu bar and click on TESTS. Whatever test is on the copy of your labs enter that and you'll find out specific information on what the test was for and help you understand what you have been tested for.

Finally, don't let one lab test through you into a frenzy. GFR is best taken as a cumulative average and not on just one test. The average of your GFR results over time is the best indicator of where your kidney function actually is. Knowledge is power and the more you learn the better off you'll be. There are many other folks here in the community that can share information with you and help you along this journey. Best of luck.

[rchrist693 in reply to Hidden]

This is so helpful. Thank you so much.

[Hidden]

Like most of us you have had a big shock, one that takes a lot to get through and get through it you will.

You have had some excellent responses, to which I would add CKD is a disease that is generally manageable with the right help and attitude.

Life doesn't end because you are CKD. It will change for you and the focus will be biased toward saving kidney function the best way you can.

This is the best forum for support so don't feel you are alone.

Cheers

[taivin98]

Unless you need a referral from your pcp go straight to kidney doc. You can also call said pcp and tell him, don't ask him to refer you to the kidney doc (and to send your records). You caught it early...drink more fluid (room temp water is best); watch your protein intake (kidneys don't like a huge amount all at once). Look at your diet, exercise, mental well being. Forget about the other a labs; kidney doc will figure that all out...kidney doc is essential services so depending on where you are the appointments should be fine (within 6 months is good). It's your GFR that puts you in the CKD group...research it and see what you need to do to improve it. People do it all the time. You don't state your age so with age the GFR lowers...get it going girl and stop being frightened; you got time...take control now.

[rchrist693]

Thank you everyone for your replies. I got off some medicines and retested. My GFR went up but still not in normal range. Waiting for my PCP to call for what’s next, but it’s been a week. I can see my blood results online. I can’t go straight to a nephrologist without a referral and my PCP seems to want to handle it. So, I’m just going to hopefully start to figure this out on my own. You all have been so helpful. I’m still scared but not as scared.

[rchrist693]

Oh by the way I just turned 40. My GFR went up to 56 on the second test. It was 46. I was on some not great prescriptions for kidneys. I looked at a test from 2018 and my GFR was 70, so it looks like it has been declining.