Terrified: I so appreciate the advice and... - Early CKD Support

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Terrified

Barnhouse
Barnhouse

I so appreciate the advice and inputs that I've been given on this helpline but I must tell you I am utterly terrified the more I read the more terrified I become I'm wondering if people are able to put this out of their mind when they were diagnosed with CKD and how they are able to do it also I just can't help but think that something is wrong with a staging system my son-in-law is a doctor and he said only 2% I've CKD patients ever get on dialysis are have a transplant so I keep thinking that the diagnosis is perhaps way overblown could anybody respond to this

22 Replies
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your son in law is right ive had ckd for years now and only just reached stage 4 ckd hope this helps ,

Angela would you mind telling me how long you've had CKD and your age I know that sometimes it's determine that CKD is simply age-related and has nothing to do with a disease

Yes your son in law is right. The vast majority of people diagnosed with CKD will never get to the stage where they need transplant or dialysis. In fact a lot of people (depending on the cause of their CKD) may never progress at all or progress so slowly that it’s neglible. I’ve been at stage 3 for almost 10 years now and I’ve managed to actually improve my kidney function through diet and lifestyle. The people on this site are very helpful Andy if you post with more information about your circumstances people will give you advice.

Barnhouse
Barnhouse
in reply to Julesboz

Thank you Julesboz l am 56 gfr of 52 creatinine 1.49 I am having extreme difficulty coming to grips with this it has colored to everything in my life

..

Julesboz
Julesboz
in reply to Barnhouse

Hi Barnhouse, well it’s natural to be worried, I was when I was diagnosed, but I honestly hardly ever think about it now. I would urge you to try to relax and not worry! Do things you can to help your kidneys (for example with diet) and take some moderate exercise and maybe something like yoga to help with anxiety. Honestly, CKD is not something that is always scary. I should say I’m 53 and my GFR fluctuates between 49 and 59.

Bet117
Bet117
in reply to Julesboz

Well said, Julesbox. You are fantastic!

WYOAnne
WYOAnne
in reply to Barnhouse

All of the advice you have gotten is spot on. Most nephrologists do not start to worry about your kidney function till your creatinine is at 1.5 or more. If you can change your diet, drink plenty of fluids daily, no salt, low potassium diet you can stabilize and may never progress to the point that you need a transplant. Do some research on line. Ask your nephrologist to refer you to a renal dietitian. Also go to davita.com to see about a diet class in your area.

Best of luck. Be proactive & be your own advocate.

Bet117
Bet117
in reply to Barnhouse

My thoughts...

Barnhouse, it is perfectly normal to feel frightened when the word kidney issue is mentioned. Your son-in-law is not wrong. The feelings will slow up.

My issues are autoimmune, but I felt the same way. Kidney issues are chronic, and can't be cured, but the key is to keep them from progression.

Healthy eating,with lots of vegetables and fruits such as

cabbage, onion, peppers, cauliflower, zucchini and summer squash is great. Fruits such as strawberries, blueberries, apples and pineapple. Become a label reader to help limit salt. Keep an eye on protein consumption; no red meat or cold cuts as well as your potassium and phosphorus levels..and hydrate..

This plus medications attentiveness to labs and exercise will help.

As WYOAnne has suggested, speak to your nephrologist first as everyone is different.

Davita is an excellent site to look at, and they offer free Smart classes on line as well as at their dialysis sites. The American Kidney Fund and National Kidney Foundation also offer great suggestions and tips for healthy eating.

Here are some good links:

kidney.org/nutrition/Kidney... out.

kidney.org/atoz/content/din...

kidney.org/content/6-tips-h....

Most importantly, remember that you are not alone; reach out and one of us will always reach back.

Sending you as well as Julesbox and WYOAnne warmest thoughts.

Bet

There is a test called isotope thats yourreal values you willsee it plus minus 15 more thannormal gfr

Following a trip to A&E, I was found to have an eGFR of 53. I too was terrified and made an appointment with my GP to follow it up and after further blood work results came back, I was told that I had been fluctuating between 48 and 76 for over 8 years. I was told that it was no cause for concern and she wouldn’t expect my results to be any different for someone my age (female 71) I was also told that I needed to make no dietary changes and to just drink “enough”.

I recently found out when clearing some old paperwork, that my much older sister (83) must have been stage 3 in 1996 and is still stage 3. She was never made aware of it as she didn’t know what eGFR meant and was not advised to make any lifestyle changes. She is still alive and apart from mild dementia, reasonably well.

I realise that every case is different and for someone much younger, it would require taking extra steps to stay well but in answer to your question, has anyone managed to put it out of their mind, I have. I view it like other aspects of my health as I get older, my sight has deteriorated, also my hearing but it doesn’t mean that I will go blind or deaf so I’ve managed to look on CKD in the same way. Please try not to worry.

I don't know what your starting point is but i assume you have a fair bit of kidney function remaining? It is true only a small percentage of people diagnosed with CKD progress to needing dialysis. Whatever it is my advise would be to do all you can to protect the remaining kidney function for as long as you can. I was diagnosed aged 48 at about 17% four years ago and am now at 12% heading for dialysis in mid 2019. I am pretty sure I could have avoided it had my kidney problems been found earlier and I had changed the very stressful life I had led. The thought of dialysis to me is awful and I have to admit that since diagnosis I have not had a single day without it on my mind all the time. I have to be honest with you and say that in my case CKD has affected every part of my life and now I have even had to give up work as I feel so unwell and so currently have no income. On the positive side I am thankful for the friends I have made on this forum and the advice and support have given me.

I find this site very helpful and I have less fear about ckd. I personally like information from other people who have experience.

First about being terrified. We all are that way, at first. Just the name C.K. Disease frightens you. And certainly it is a condition that should not be ignored. But it is NOT the death sentence you make think (as most do). Over time you will find you will be less fearful. But to be honest it will always be on your mind. You will think of it most every day at some point in the day. But the fear factor will lessen. As you read the posts in this forum and even some of the other answers you have to this post, you will see that the entire eGFR and CKD approach is suspect. It does not mean that there is nothing wrong with your kidney(s). But the approach has many flaws, questions, is a one size fits all approach, and it's mere name strikes unwarranted immediate fear in patients.

Around 2002, some group of (presumably) nephrologists got together and came up with the staging system we are shown today. It was “invented” in an effort to standardize and simplify CKD - as the current state of the field at that time did not have any standard guidelines to go on.

Ever since that time, nephrologists and other physicians have been fighting (mostly in the literature) as to what is the best formula to use for an accurate eGFR. Since eGFR was derived from serum creatinine levels, age, sex, and other factors - there were many different ways to calculate eGFR - but it was basically the measurement of creatinine (an indirect measurement as creatinine really is not related to the kidneys directly). Creatinine is a product of overall protein metabolismin the body and not specific to kidneys at all!

I think in the last 18 years there have been dozens of proposed formulas to calculate eGFR. The use of creatinine and only creatinine is not that reliable as creatinine can be higher or lower for a number of reasons totally unrelated to kidneys as all. EGFR simply is supposedly a measurement of how much your body eliminates serum (blood) creatinine via the kidneys.

Thats the problem right there. The eGFR equations all try to estimate kidney function by seeing how much creatinine is left in your bloodstream. What the equation does not look at is how much creatinie comes out the other end (urine). It also doesn’t look at how much creatinine you naturally make to begin with (impossible to determine). So the eGFR determination uses a lot of assumptions based on age, sex, race, etc - on combination with your measured serum creatinine - to determine how well your kidneys work. That estimation is an estimation at best.

The problem is that there are so many assumptions made to determine eGFR, that (in my opinion) the formulas are really guesses - and may be very or completely innacurate. Combine an inaccurate GUESS of kidney function with the arbitrary stages of 1, 2, 3ab, 4, and 5 - and it really is far from scientific. Stage 1 makes no sense, because these are essentially normal people. Stage 2 theoretically shows diminished kidney capacity, but doesn’t account for the fact that the eGFR equations are not accurate enough to give meaning to this stage. Stages 3-5 could also seem to be guesses as we really can’t reliably estimate kidney function from eGFR. People in stages 4-5 might be more pegged in the right ranges - but only because by that point, other reliable methods of kidney function have been used when examining them.

I could go on, but its clear that we have a VERY imperfect estimate of kidney function in a somewhat meaningless scale of 1-5. If you take this “screening tool” for CKD too seriously - you can be calling yoursef as having CKD when you aren’t even close - or missing REAL CKD because the estimation tool is so imprecise.

See my longer answer- but please do not be terrified. Your son in law is correct. And I bet he and his colleagues do not even recognize someone as a CKD patient until stage 3b, and even then look for disease states that might be a real problem. So you are probably talking very small numbers of people.

I was apprehensive too when first approached medically about my higher creatinine and lower GFR. After a good deal of reading online and in “Google Scholar” I personally feel that the whole Kidney Disease field is a mess and quite a bit hysterical when it comes to naming people as being “in danger.” Yes, my saying these things is probably “heresy “ in this forum, but I am tired of hearing good people be terrified by a medical field that cannot get its act together.

The kidney societies all give the same guidelines and measurements - but it is one hell of an oversimplification. Half the people coming to this form come here in fear from some physician telling them misinformation that they shouldn’ be talking about at all. Please don’t worry. None of this is as bad as it seems - not by a long shot.

Hello Jonquiljo, and Barnhouse,

I have found your two posts above very interesting to read, especially the events around 2002, which I have been unaware of. In informing us of these facts, you are indicating that either they have come up in your research into CKD or you have a medical background? Either way it would help to explain why in my particular case my GP and the renal team were unwilling to give me any figures relating to my kidney function, though very recently I found out that my eGFR was 40 as I saw a different GP at the same Practice. I have learned enough from this site to know that I am in stage 3. I was told that I had been monitored and had been stable for many years, so I decided to do the best I could regarding eating the low potassium diet I was told to follow (all the research for which I did myself), drink more water, exercise more, lose some weight and avoid smoking and alcohol (easy for me as I have not smoked or used alcohol). Age and genetics come into it as well, neither of which I can, or could, do anything about!

I agree with all the advice given above to Barnhouse in particular and to all those who have recently been told they have CKD. Please try not to worry and do all you can to be informed and pro-active about your own situation, then you will know you have done the best you can to help yourself. Best wishes to all - Curleytop1.

As you can see from my posts - all of this stuff is complicated as hell. This makes the Creatinine-GFR-Stage 1,2,3,4,5 oversimplification so difficult. You can fit parts of this scheme and not others. You can miss out on “real” CKD altogether. Its nuts.

My biggest emphasis has been to loosen your thoughts on the strictness of the stage 1,2,3,4,5 rules (don’t drop them, relax your thinking) - and look at individual factors in your particular tests. If you leak a lot of protein with a GFR of 40 and are younger - then you need to get thoroughly checked out by a Dr. if you have a GFR slightly over normal but are not leaking protein - then relax things a bit. Medicine and science never fit into neat cubbyholes like Stage 1,2,3,4,5. There are exceptions, sometimes many exceptions. Don’t get overly obsessed on CKD if you have little reason to worry. But don’y ignore obvious problems just because you are comfortable in a particular cubbyhole.

Drinking sufficient water, exercise, losing weight and avoiding smoking are things that are essential for all health. Anyone should be doing that. There are a lot of things that can make you ill, and kidneys are just one.

Now (to answer your question). I am NOT a medical Dr. I never wanted to be one! I was a research scientist in biotechnology. I have a Ph. D. In molecular biology. What this does enable me to do is go over the written literature and see what things are good and bad. All getting a Ph. D. did - was teach me to learn to learn. At 65, I still can learn, and when faced with my own CKD oddities I went to the literature to try to put it in perspective. You can do the same thing. The information is there. The only advantage I have is that I have worked with a lot of physicians in my day and see how little some of them actually think. They get stuck on dogma, and it shows. Yet there are physicians that don’t do this - and they are the ones that matter.

Barnhouse
Barnhouse
in reply to Jonquiljo

Jonquiljo that is nothing other than a brilliant analysis and helps explain why so few people ever get to dialysis. Still I wonder with all the imprecision why so many consistently have higher egfr's and lower creatinine than me at my age. Perhaps as you said a while back some guys jusy have high's and low's for them. A friend of mine has had consistently high cholesterol for decades and the doctor has said while it's not the norm it's not necessarily bad for him. Also I think all this testing and referrals to nephrologist have a financial component to it. One doctor who I have known for years who was chief anesthesiologist at a hospital in Canada said to after I gave him my numbers Look this is all about money! Having said all that I still am worried. It is so unsettling to hear from Professional Medical people that you have a potentially fatal disease but Jonquiljo you are very much a help to me and others!! Thank you and Merry Christmas!!!

Jonquiljo
Jonquiljo
in reply to Barnhouse

At times it is about money. At times it is simply medicine which is far less than perfect as we would like to believe.

A “normal” creatinine level is really just a collection of serum creatinine determinations collected by age, sex, and other criteria. I believe every blood lab gives what is statistically their “normal” for creatinine. That means if you fall on the high end of the creatinine scale, you may exceed the cutoff and be abnormal. If you look over blood labs from many years, you will see “normal” creatinine change as each lab is constantly trying to figure out what is statistically normal or not.

But there are a lot of things that can make your creatinine higher or lower than others you know. You may simply have a higher level. I don’t think its been studied that well. If it has, the politics of medicine intervene and you get confusion.

I am not saying that CKD doesn’t exist. What I am saying is that determination of GFR by creatinine, age, etc - is a very imprrfect SCREENING METHOD. The current method was chosen in pert because it is easy to do and quickly screen people. If you fall on the fringe of high creatinine, you CAN be overzealously screened as having worse kidney function than you really have. The problem is that since everyone is screened that way - you don’t know the real from the unreal. Many Dr’s don’t know how to handle this - and many ignore GFR as a result - WRONG methodology. So people get the wrong information on both fronts.

An internist or a cardiologist worries about what they do. Also internists tend to be less trained than specialists. You get the idea - and many Drs really don’t think about this at all. Some do, and you get good information. Many don’t and you get spun around in circles. Its maddening. Nephologists often likely stick with the standard guidelines - it’s their bible. Yet even some nephrologists argue among themselves (in the literature) as to what this all means or not. I guess I am saying is that we have to get lots of opinions and decide for ourselves to some extent. It depends on your medical situation - i.e.- if your creatinine jumps rapidly higher in the course of a year. If you have other symptoms, etc. This whole thing is a lot more complicated than a crossword puzzle - and the oversimplification of the guidelines doesn’t do it justice. Good luck.

Barnhouse
Barnhouse
in reply to Jonquiljo

Jonquiljo another question. I love to run 6 miles three times a week and weight train twice a week. Now I am reading that that is bad for kidney disease (too strenuous raises creatinine ). Again this whole thing sseems so ridiculous yet still so utterly terrifying. What is your take on exercise?

Jonquiljo
Jonquiljo
in reply to Barnhouse

Well, the prospect of dialysis or a kidney transplant is terrifying. These are not fun things to do. So people tend to worry more than they should.

Creatinine is used as a marker for kidney function. Basically, it is asumed that creatinine production is constant and reproducible. The amount of serum creatinine that is left in your blood is seen as an indicator of how much your kidneys have been successful at removing it. So lower creatinine supposedly equals higher kidney function. You do see the potential pitfalls in these assumptions?

If you work out more, you break down and rebuild muscle tissue and this produces more serum creatinine. Serum creatinine is a by-product of muscle mass and metabolism - not anything directly to do with kidneys. If you raise creatinine by exercise, it is just raising creatinine. It doesnt change the assumptions of creatinine measurements or GFR calculation.

So all you are doing by heavy exercise is raising creatinine. You are probably straining your kidneys a small bit because there are other by-products of exercise in the bloodstream. Unless you have poor kidney function, this should not be a problem. Just stay well hydrated.

Olympic athletes do not die in droves from CKD, and they exercise a helluva lot more than that. So personally I wouldnt worry. Just don’t make yourself ill from too much exercise. But that really pertains to overall health. Anyway, I was told by a cardiologist I know that it takes a LOT of exercise to creatinine significantly. A LOT! Good luck.

Barnhouse
Barnhouse
in reply to Jonquiljo

Thank you so much Jonquiljo

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