Becoming more and more consumed with anxiety!

[Barnhouse]

A again I am a 56 year-old man with a gfr52 and a creatinine of 1.49

[Julesboz]

Hi there, I really think you ought to go and see your GP about your anxieties and hopefully put your mind at rest. As I’ve said on a couple of previous replies to you, it doesn’t sound like you should be worrying and it IS possible to halt and even reverse kidney function decline, despite what internet literature may say. Please don’t worry!!

[Barnhouse in reply to Julesboz]

Julesboz I so appreciate your desire to encourage. Unfortunately this has almost destroyed me! My gp has said that I have decades yet before any treatment will be needed but I keep thinking that he was simply trying to be overly encouraging because I've been so stressed out. How long was it before you were able to just forget about this and go on normally with life I am afraid that this is going to paralyze me for years and years and years the thought of needing dialysis or a transplant is so utterly terrifying to me I don't know if I could handle that and then again I read all of these posts and articles on the web and has already been said while some are very helpful some are incredibly discouraging I don't know if the Nephrology Community realizes how this kind of diagnosis sends people into a tailspin for many many years

[orangecity41 in reply to Barnhouse]

I am a male age 77 and diagnosed with ckd level 3 b, 3years ago. With prescribed renal diet, appropriate for my conditions and age, the progression has slowed. There is hope that will avoid dialysis for many years,, and might never need it. The diagnosis was shocking, but one that I found can be dealt with.

[Julesboz in reply to Barnhouse]

Your GP wasn’t being overly encouraging, he was being honest, in fact I’d say he was being overly negative as it’s possible you may never need treatment and may stay at stage 3. Only about 5% of CKD sufferers every get to dialysis/transplant stage. I had about a month of worrying and researching before I stopped worrying.

[Barnhouse in reply to Julesboz]

Julesboz in your research have you come across the idea that slightly higher creatinine levels may be perfectly acceptable for some people it just seems that this whole staging system is far too cut-and-dried as Jonquiljo and others have talked about I don't want to be in denial but with a relatively few people ending up with end-stage renal failure comparatively speaking it just seems that too many people her being over-diagnosed

[Julesboz in reply to Barnhouse]

All I can say is that although I was officially diagnosed only last year, I got all my blood test results going back 10 years and my GFR/creatinine has been similar all that time (I’m 53 so that’s from my early 40s). As the doctors have been unable to give me a reason for my CKD (I’m a healthy weight, have low BP, don’t have diabetes or any other co-existing condition, and haven’t used any drugs that might cause this), and I don’t have protein leak, it could just be ‘normal’ for me. Some doctors I have spoken to also believe I don’t have CKD, even though it’s been diagnosed, because my GFR is only marginally below 60. It is a very tricky subject. Despite all the doubt, I have chosen to believe the diagnosis and to look after my kidneys to make sure they don’t get any worse. I don’t worry about it but I do have a healthy diet, exercise, don’t drink and don’t smoke, and avoid NSAIDs. That philosophy has helped and my GFR has improved in the last year as a result.

[Jonquiljo in reply to Julesboz]

I think you are making the point for everyone. You have absolutely nothing wrong with you. You have healthy weight, low BP, no diabetes, no other condition, no kidney toxic drugs, no protein leak. Your serum creatinine falls into a level where it gives you a GFR in the upper 50's. Is that a disease? Reference ranges are statistical "averages" for people measuring creatinine at every age. You just happen to be a bit toward the top end of the curve. I still bet you are in better shape than most people your age in almost every way.

In 10 years, they may totally change the criteria and they will have to "un-diagnose" you. Everyone over 50 should have a healthy diet and weight, not smoke or drink much, and avoid NSAIDs. That's healthy living. But I'm preaching to the choir here. You know there's really nothing wrong with you.

You have the same problem as I do - high creatinine and nothing else wrong. I just happen to be about 10 years older where the GFR starts going down and down. It actually moves around a bit because the labs keep changing equations to computer GFR. My creatinine has been the same over 15 years. I was 50 then , and I don't have earlier records. Probably I had high(er) serum creatinine my whole life. When I start having a problem that looks kidney related, I will deal with it. Right now, I just life as well as I can without over-reacting. I guess we're just statistical anomalies!

[orangecity41 in reply to Jonquiljo]

You are making a good point that could be other factors that are taken into consideration for diagnosis of CKD and more than just an eGFR, that has not changed over the years for example. Each individual case is different.

[Jonquiljo in reply to orangecity41]

Yes The "system" of GFR and staging was invented as an "inexpensive screening tool." Screening. Somehow it has been turned into a diagnostic tool. That probably happened because it was sold so hard by the people who invented it - and the audience (mostly GPs) knew so little about CKD that they immediately adopted it without understanding what it was all about. Other factors are not taken into consideration - like urine protein and ACR - likely because their GP's don't know enough about CKD to even investigate.

If CKD were that simple, life would be uncomplicated. The fact is that CKD is very complicated and the method used in the past 17 years to simplify (and screen people) has actually snagged a lot of non-problematic people in it's web.

A lot of people come on this forum and clearly have CKD and not "Early CKD" as the title of this forum suggests. Almost universally they are told to contact a nephrologist.

A lot of other people also come to this forum that are snagged by "the formula" and likely have nothing wrong with them. Yet their Dr. doesn't know enough to tell them they are totally fine - and sends them off for other tests and consults.

Finally, there are some people in the middle that have been snagged, but have a very small chance of ever developing CKD. These are people that have a pretty small chance of going to renal failure, but are concerned enough to check it out.

[Barnhouse in reply to Jonquiljo]

Jonquiljo and all I just got my new test result after three months. It said my gfr is 67 and my creatinine is 1.2 Was encouraged by that but what does that mean? Am I now in stage 2 and do I continue to proceed with rigid diet etc?

[Jonquiljo in reply to Barnhouse]

Well, it means you are pretty normal. Stage 2 is a joke ... What does it really mean? It certainly sounds like whatever you have changed since your last result is putting you back to normal normal!

What were your numbers before you had the creatinine 1.49, GFR 52 result? Did you change morethan your diet?

I cant imagine that a rigid diet is necessary, but I’m not sure how “unrigid” it was before. Were you dehydrated on the day you gave blood for the creatinine 1.49 and GFR 52 result?

[Barnhouse in reply to Jonquiljo]

Jonquiljo isn't 67 still a very low number for my age. I keep thinking that next blood test or at least in the next few years because of kidney aging I will be back below 60. Since my first test I increased water intake dramatically upped my exercise and lost 40 pd. I am wondering more and more about the reliability of this whole thing. But my basic question is am I still low for my age?Thanks Jonquiljo you have been an enormous help!!!!

[Jonquiljo in reply to Barnhouse]

There is no "low" for your age. This whole thing is a screening tool. And at 56, you will be 76 in 20 years. It doesn't really matter anyway. The whole calculation and classification are really lame.

Do you have a lot more weight to lose? Exercising crazy is not good either. I exercise a lot, but try to keep it within reason. If you increased your water intake, that may affect things for the better - best 2 1/2 - 3 L a day - maybe 3 1/2. How much were you drinking and how much now? If you were dehydrated overall, this would affect the numbers.

I am a little less than 10 years older than you and my creatinine has been in the 1.2-1.3 range for at least 15 years. Only recently did GFR tests use the new equations that could even give GFR's over 60! That should tell you something.

And with my numbers, no Dr. will tell me I have CKD. They say that this is the way I am. nothing is changing. I test them by trying to get them to tell me I have CKD and they just won't say it.

You're doing the right things and IMO, you are fine!

[Barnhouse in reply to Jonquiljo]

Jonquiljo Can I ask you I was excited and encouraged about my latest GFR rating of 67 but then I went to my GP and got discouraged again he said to me look you've had three bad tests and one good test so we have to continue on the process and see if this continues But my first three tests were all within a 5 week period. The best result with those tests was a gfr of 54. This was my three month "confirmatory" test for an official diagnosis. I got the impression my GP almost thought it was a fluke I wanted to get your opinion on this he said to me that that type of a jump was very unusual but again I have no protein or blood in my urine my bun level is 13 I have no diabetes or high blood pressure so again I wanted to get your opinion on this

[Bet117 in reply to orangecity41]

Agreed! One size does not fit all!

The key is to eat healthily and stay on top of things.

[Barnhouse in reply to Julesboz]

Julesboz how long was it before you were able to put your anxiety aside and get on with life. No matter what I do I can't help thinking dialysis is on the horizon and the terror of that is paralyzing. Can people truly go DECADES with gfr in the fifties or sixties?

[Julesboz in reply to Barnhouse]

Barnhouse, yes as I’ve said before I’ve been between 49 and 59 for at least 10 years and, at the moment my GFR is 59 so it’s the best it’s been. I don’t expect it to drop again because I’m being proactive and have a healthy diet. I think I was anxious for about a month, but I researched and spoke to the people on this site and realised that I’m highly unlikely to end up on dialysis. Please go and see your GP about your anxieties, they will hopefully be able to reassure you.

[Jonquiljo in reply to Barnhouse]

Here's a calculator that someone posted here a while back.

kidneyfailurerisk.com/

I plugged my numbers into it - age 65, GFR 58, ACR (urine albumin) 17mg/G, etc.

It gives me a 0.3% chance of going into kidney failure in 5 years. So I probably have a 1% chance that I will could go into kidney failure by the time I am 80! This calculator goes by the standard Stage 1,2,3,4,5 scoring that I don't even believe in. I'm more likely to get hit by a truck before I'm 80.

The reason that I mentioned elsewhere that I had chronic leukemia is that as you get older, things just start to fall apart on you. Leukemia will probably not kill me - I may never even need to be treated for it. But something will eventually do me in.

It could be that truck, my low GFR, something I don't know about yet. Please don't worry about your supposed CKD. Your GP was a fool for speculating that you may not need to be treated for it for decades. You most likely will never have a problem with it for your whole life. Your GP basically has foot in mouth disease. Sorry, his comment was way out of line. He just read the pamphlet that everyone's handing out these days and has no idea of what it means. At least he read something. Good luck and do not worry!

[orangecity41 in reply to Jonquiljo]

Thanks for link for kidney failure risk. I checked it out. Part of the equation is Urine Albumin-Creatinine Ratio. Is that the MDRD or CKD-EPI calculation? Your region also is a factor? So do not know if just put in eGFR is correct?

[orangecity41 in reply to orangecity41]

Meant to say creatinine and not eGFR

[Jonquiljo in reply to orangecity41]

You see - ACR is taken into consideration here. They used more than GFR! MDRD vs. CKD-EPI is still a controversy in general. Either will do. CKD-EPI is becoming more preferred, but it still isn’t the greatest. Your GFR will be different if determined by the MDRD or CKD-EPI.

[orangecity41 in reply to Jonquiljo]

Thanks for clarification.

[WYOAnne]

As others have said, many have been able to stabilize their CKD (if that is even what you have) with diet and keeping their BP under control. You do need to go back to your PCP about all of this anxiety. CKD may never develop for you. Multiple blood and urine test over time usually are required to get this diagnosis. If you were dehydrated at the time of your blood test, it could effect both your eGFR and creatinine.

If it winds up some day that you do have CKD, you need to stop thinking of it as a death sentence. DML Dialysis Means Life....if in kidney failure be glad there is something that keeps you healthy like dialysis. And a transplant is a 2nd chance at LIFE. I have had a transplant 19+ years ago and am leading the GOOD LIFE! This was NOT a death sentence for me!!!

[curleytop1]

Hello Barnhouse,

I do hope that the many replies you have received to your posts have reassured you that you should not be so stressed about your test results regarding possibly having CKD. There are several things you can do to help yourself and I find this sort of action the best way of keeping calm.

You will have seen many posts advising on choosing a kidney-friendly diet to eat, to avoid as much as possible the usual non-healthy things like alcohol, salt (and salt substitutes) sugar (and artificial sweeteners) and of course, no smoking. You may be doing all or some of these things already but it will do you no harm and can even make you feel better because you will be IN CONTROL. I think a lot of your anxiety is because you have not been given the support by your GP beyond the comments he/she made - this also happened to me and I realised I would have to do my own research into diet and the ins and out of what best to do - this was over 3 years ago and I have never stopped learning about it all - in my experience the more informed one is about the ups and downs of life the quicker one can deal with it and move on - it doesn't go away but it can be CONTROLLED, that naturally lessens anxiety.

There are lots of earlier posts on here giving good, reliable information about all aspects of CKD - please spend a while reading about the things that concern you most (naturally this will be different for everyone). Make a note of all the things that concern you, then try to research the answers - I know this is time consuming and that you will not find the right information for every concern, that is why this site is so important to us all, but being pro-active about your own situation will surely help you to allay your fears to a large extent (I realise deeper research can also raise worries one has not previously thought of, but many of these can also be explained by a suitably qualified person).

Please try to look forward to a calmer, more tranquil 2019. Good luck and best wishes - Curleytop1.

P.S. Forgot to mention the obvious - please come back again if you feel you need more support, we are all thinking of you......

[Bet117]

Agreed!

It is very natural to feel stunned or frightened at the words kidney disorder, or any disorder. The important thing is that you look at the positives in your test results rather than the negative and take steps to prevent progression such as heathy eating, exercise and a mind set that this can be managed.

If your GP is unable or unwilling to answer questions, direct you and put your mind at ease, don't hesitate to tell them or find a physician who will.

Always know that one of us will be here for you; just reach out!

It will all fall in...

[toeragthecat21]

HI..YOU HAVE AN EGFR OF 52 WHICH IS THE SAME AS ONE PERFECT KIDNEY..THIS IS MORE THAN ENOUGH TO KEEP YOU WELL FOR DECADES IF YOU TAKE CARE OF IT...SO KEEP FAT LOW ..SALT LOW ..STRESS LOW!!!!.AND YOU WILL BE OK.