Ckd 3 and concerned

[Barnhouse]

Hello I am a 56 year-old man was just diagnosed with CKD stage 3 my GFR is 52 creatinine 1.49 no diabetes no hypertension the nephrologist is bewildered as to why I have this I'm wondering how long I can stay in stage 3 without needing a transplant or dialysis wondering if anybody could help me on this

[Hidden]

Hi and welcome. First, let me say that you are fortunate in that you have a GFR of 52 and know you have CKD. Many of us didn't find out until much later. There is a lot to do to become proactive. If you are in the US go to the davita.com website and look for a free 90-minute Kidney Smart class in your area. The class is well worth your time and will provide you with a wealth of information to familiarize you with CKD and your options to stay off dialysis for as long as possible.

Begin putting together a spreadsheet with all of your lab results to help you spot any trends toward sliding towards ESRD. If you watch your diet, develop with your physicians' input, a thorough exercise regimen, it will help you begin the journey. That same DaVita website will provide you with a lot of recipes to help you figure out what is good to eat and what you should avoid. None of the recipes are designed to be taken as face value. I'll explain this further down.

Not having either hypertension or diabetes is a plus but until they determine the reason for your CKD it's best to lower the amount of sodium you take in. You don't want to eliminate it but it won't hurt to cut back. If you drink cut way down if not out altogether. If you smoke, stop. It will do you no good. Begin putting together a Care Team of specialists to help you with medical decisions. At your age, this team should consist of your PCP, nephrologist, a urologist, and any other type of physician you may be seeing.

You might ask your nephrologist to provide you with a referral to see a Renal Dietitian. This person, also on your Care Team, will look at your blood and urine labs for the last 6-12 months and help you develop a kidney-friendly meal plan based on your labs and using the recipes from DaVita, to get you started, you can begin to make the lifestyle changes to slow down the progression of CKD. As all of your physicians about any medications you take and if they and the dosages prescribed are detrimental to CKD. This includes any supplements you may be taking. Be sure they all know about the CKD and remind them of it at every appointment and be sure that each set of labs taken by one is shared with all of the others.

You've found this site so you are well on your way to getting the knowledge needed to become proactive and put off dialysis for as long as possible.

[Barnhouse in reply to Hidden]

Thank you so much mr. Kidney for your response can I ask you I read on the internet that most people with stage 3 kidney disease never reach the point of dialysis is that true or is that simply internet fiction like so much of the other stuff I read

[Hidden in reply to Barnhouse]

There is no guarantee. I started out 18 months ago with my GFR of 32. In October it was 65. I don't mess with my meal plan and the RD and I exchange e-mails after labs if results show changes need to be made. I'm careful about my meds, including OTC's, and I exercise every day. It's my goal to hold off dialysis for as long as possible. Having said that I still have learned all I can about dialysis and made choices now so that if necessary in the future I'll be prepared. Learn all you can and remain proactive.

[Barnhouse in reply to Hidden]

How do I get my hands on your diet plan

[Hidden in reply to Barnhouse]

The meal plan is designed for me based on my labs. Changes are made, if necessary if my new labs show an issue with things like potassium, protein, phosphorous, calcium, and sodium then I make adjustments. Other things can temporarily effect my meals but don't impact great changes. Colds, flu, and exhaustion can cause food issues but then I reduce the portion further. Even recipes I find on the DaVita website have to adjusted for me. There is no one kidney-friendly meal plan that works for everyone.

[Barnhouse in reply to Hidden]

I did not realize that kidneys could improve to that degree I thought once you were down on your GFR that there was no hope you could only attempt to keep it from going lower

[Hidden in reply to Barnhouse]

GFR is just a snapshot of your kidney function at the time of your labs. Along with your Serum Creatinine, they give you and your Care Team a solid idea as to where you are and where you need to go.

When I found out about CKD I was at a GFR of 32. Changing to a kidney-friendly meal plan takes time. Looking at my medications for T2D and HBP along with AMD and a few other things for smaller issues takes a while. You have to get one drug out of your system, in some cases slowly, and another one in and at the correct dosage. A new medication may not be effective and have to be changed. I was on Lisinopril for HBP and within 2 weeks had a bad reaction and went to the ER while I was traveling. A change to Amlodipine and almost three years later I've got my BP under control.

Nothing can happen overnight. It takes time and you have to be patient and have lots of stick-to-it-iveness and not get discouraged. Add to that an exercise regimen that works for you and all of your health issues for the entire year. I just had new tires put on my mountain bike and fully expect to need 2 more after my trip to Colorado and Utah this coming summer for 3 months. Nothing happens in a vacuum and you need patience. My second career was that of Special Ed teacher for middle and high school students and as a schoolwide Behavior Specialist. After doing that for many years I knew the patience part was going to be easy for me. I just didn't know how long I'd have to be patient. It turns out it's for a lifetime. I was never a drinker. Occasionally a beer after work but nothing more. I never took to smoking. The idea of something on fire three inches from my nose was not something I could do on a regular basis.

Having said all that I have to admit, nobody was more surprised than me when they told me my GFR in Oct. was 65. I asked my doctors, "How did that happen?" Their answer was to enjoy it, as the next one could go down just as easily. What you have to learn is to not panic when it goes lower, and conversely, don't celebrate with a large pizza and beer and a stop at DQ on the way home when it goes up. Stay steady.

[Barnhouse in reply to Hidden]

Mr. Kidney I can't tell you how much I appreciate you taking the time to respond to me with these questions that I have I am so very grateful for your responses I just got back from my GP and he told me that it's very possible that the Omeprazole that I was taking caused my low GFR and he thinks I have another good 30 years before I'll have any problems with dialysis

[Hidden in reply to Barnhouse]

For your own peace of mind take a look at what drugs.com says about omeprazole and its side effects. In any case, your next few labs will give you a good idea of where you are and at what Stage you are in and give you a good idea on how to proceed. Don't panic but proceed forward until you have more labs and are certain all is well for now. Most of the folks here will tell you that had their physicians told them earlier about having CKD they would have been happier to begin changes to their meals, exercise, and medications. I'm glad my information has been helpful. Pay it forward and help others you come across.

drugs.com/sfx/omeprazole-si...

[Cbailey in reply to Hidden]

Mr. Kidney,

Could you tell me about your diet? I know diets will change a bit based on labs. Is your diet strictly plant based? Do you eat meat and diary? I’m amazed at the increase in your gfr! Congrats!!

I’m 42 years old, and found out two years ago I had ckd. I started with a gfr of 52 and I am now at a 44. I am otherwise healthy, not overweight, or smoker, or a drinker. I don’t take an OTC’s. I have limited my sodium intake, increased my water, and eat pretty healthy. I also go to the gym as much as I can. At my last neph appointment he encouraged me to also do a low protein diet, at no more than 50 grams a day. I have done so, but now my labs show that I’m anemic and I dropped 4 more points in my gfr. I hear so many success stories and feel a little defeated. Any advice you can give would be greatly appreciated!

[Hidden in reply to Cbailey]

Hi, there have not been a lot of changes to my meal plan in the last two and a half years. What changes have been made, so far, have been temporary.

While my meal plan is neither vegan nor vegetarian, I do include a lot of fresh vegetables. My daily protein limit is 8oz. per day. I eat poultry and seafood. Shrimp is good, so is crab, and other fillets that I can find. In October of last year, I had to have my gallbladder removed and as a result, I cut out some of the fattier fish like salmon, and catfish.

My meal plan was developed in consultation with a renal dietitian and we reviewed a year's worth of my labs.

I don't eat any red meat, processed foods and rarely go out to eat since I can't control the preparation process.

I have my labs drawn again in three weeks and I continue to feel good and hope my GFR average stays above 51.

Best of luck to you.

[Cbailey in reply to Hidden]

Mr. Kidney, thank you for your reply. Also, could tell me how often you get exercise? I’m wondering if my attempt at the gym is helping or not. Normally, at the max, I can only get there about 2-3 times a week. And do the treadmill and eliptical for about 40 min. I’m wondering if that’s why I haven’t really seen any results yet? I am generally an active person. I have 3 kids and teach pre-K part time.

[Hidden in reply to Cbailey]

Exercise has to become a part of your daily routine. How long and what you do is up to you with the help and guidance of your care team. I walk every day at least a mile, weather permitting I ride by bike about 3 miles instead of walking. When the weather doesn't allow for outside exercise I use a treadmill or my elliptical.

I'm not looking for visual results of my time exercising, rather I'm exercising to keep myself healthy and stave off symptoms of CKD.

Nothing is done in isolation. My meal plan, exercise, medications, keeping appointments, positive attitude, planning my trips and even my hobbies (birding, wood carving, reading and photography) all help me work toward achieving my end goal of staying off dialysis for as long as possible.

[Cbailey in reply to Hidden]

Thank you for your reply!

[Barnhouse in reply to Hidden]

Mr. Kidney I'm reading on the internet that a plant-based diet is the way to go if you have kidney disease avoid all meat and all eggs to think this is the correct approach are not thank you so much for taking the time to respond

[Hidden in reply to Barnhouse]

Different strokes for different folks. While everyone agrees that a kidney-friendly meal plan is an integral part of slowing down the progression of CKD how each person goes about that is an individual matter.

There are those who believe that a plant-based plan is the right way for them and if their labs support that, great. There are others who believe that some protein from poultry and fish including the occasional egg is the way to go. My RD and I have determined that I need to keep my protein intake at 8oz. per day. I eat fish (mostly what I catch) and poultry (chicken and turkey) to stay within my daily limits.

Talk to your RD and decide which direction you feel more comfortable in following. Best of luck, Merry Christmas.

[Barnhouse in reply to Hidden]

Thank you again mr. Kidney for your response I'm wondering if you could answer another question sometimes you read on the internet about people who are diagnosed with CKD stage 3 and they say they've done everything right follow the doctor's orders maintained a strict diet kept everything under control and yet in 2 years they needed a transplant post like that terrify me do things like that actually happen can kidneys collapse that quickly

[Hidden in reply to Barnhouse]

The simple answer is that Yes, it can happen quickly. Having said that I need to ask you a question. Has your nephrologist talked to you about finding out the cause of your CKD? Has he done an ultrasound? Has he recommended a biopsy? I ask because you previously mentioned not having hypertension nor diabetes. An ultrasound can possibly give some indication as to the cause. I have both HBP and T2D and have had two ultrasounds and it was determined that my CKD was likely the result of Diabetic Nephrology. We briefly spoke about a biopsy and determined the risk was not worth it and so that hasn't come up again. Make sure that any testing they decide to do to avoid contrast dye. In many cases that is potentially a fast way to ESRD.

Not knowing what insurance you have it always pays to get a second opinion. With all of the physicians I have on my Care Team (PCP, Nephrologist, Cardiologist, Urologist, Retinal Specialist, Podiatrist and (even) a Dentist, I check with all of them. Thank goodness most of them have a Patient Portal and the few who don't get back quickly to me after a call or e-mail to a nurse or the office.

[Barnhouse in reply to Hidden]

I did have an ultrasound and everything came back perfect the only explanation my nephrologist has is that it might be from medicine I was taking or I have had gout in the past from drinking I think too much soda at least one or two cans of pop a day but since I've cut that out I have no problems with gout at all so she's attributing the problem either too medication or gout she said to me that doing a biopsy of my kidneys would not at this point tell her anything so she did has declined to do it she did say that she thinks that I have at least 30 years without potentially a problem in terms of dialysis or a transplant but I keep thinking she's just trying to be overly encouraging

[Hidden in reply to Barnhouse]

Suggesting that you have 30 years without getting to ESRD without knowing the cause seems a bit irresponsible to me. The next best thing will be to wait until your future labs come in and see if that offers any indication.

[Barnhouse in reply to Hidden]

Mr. Kidney I want to ask you I know there is a lot of controversy today surrounding even the staging system of CKD do yout think there is potential overdiagnosing going on with certain seemingly healthy people I know the staging criteria came out just in 2002 and was modified a little bit in 2012 but for somebody with no protein or blood in the urine and slightly elevated creatinine could that just be a high for them with no serious implications I love to get your input on this

[Hidden in reply to Barnhouse]

I have a different way of looking at this. If you look at the stages of CKD as a monolithic paradigm it will drive you nuts. It's a guide, not definitive. Making the lifestyle changes, (diet, exercise), watching meds for other health issues can't cause you harm if six months from now your GFR and serum creatinine are "back to normal."

The Stages are a good guideline to follow. If it turns out you don't have CKD what harm was done? If you do have CKD and took the necessary steps early enough won't you be happier? I found out when my GFR was at 32. I should have been told about a year before that but my ex-physicians chose not to tell me. As it now stands my GFR is at 65 and I have a different and better life.

[Barnhouse in reply to Hidden]

Thank you mr. Kidney once again you have been an incredibly wonderful help Merry Christmas to you!

[rabbit01]

That’s kidney disease for you! Four years ago I was 48 years old when I was diagnosed at late stage 4 with just 18% GFR. I was told it was too late to do anything and I would be on dialysis within 6 months. Like you I don’t have diabetes or high blood pressure and there is no history of kidney problems in my family. Nobody can tell how long you can stay of dialysis but the good news is you have plenty of kidney function remaining so you can help yourself by possibly modifying your diet and lifestyle. I cut out colas, red meat, quit smoking and nowadays eat a lot more fruit and veg. Four year on from diagnosis I am not yet on dialysis and have a GFR of 12%. I was even working full time until Summer this year. I am convinced that my GFR would be even higher if I had of had better health care when first diagnosed and they had been proactive in slowing down the progression. In my experience diet changes are very underestimated by the medical profession. I even had one idiot doctor who told me "Just go home and carry on eating normally" I could have done that and I would have been on dialysis by now. This forum is a very good place for you to be and I have learned far more about this condition from its members than I ever have from any health professional. That said it is essential to get a good team of medical people around you. At the start of this journey I wasted so much time putting my faith in one nephrologist only to find out that they were pretty useless. Listen to the experiences and hear about the treatments that other people on this forum are having and don’t be afraid to question your medical team. It's you body and your life and you only get one of them so fight tooth and nail to get the best treatment.

[Philipjm]

Hi,

I was in a similar position as yourself, diagnosed at 56 ckd3.

Stayed steady for a few years then started dropping.

I had regular visits to my renal clinic, followed all the advice. When my level dropped to egfr22 I had a biopsy, this did not resolve anything. I am part of a group if the population , around 11% who have renal failure and a cause cannot be found.

The only thing we could imagine is that I have had an infection at sometime which has caused the failure.

Sometimes life can be random and I drew the short straw.

I started CAPD and now on home heamo which I do overnight.

My health is great and I manage to do all I want including working full time at 72.

Yiur renal department is the best to advise you

Best

Philip

[Julesboz]

Hi there, I also have unexplained CKD with none of the obvious risk factors. You should be aware that the vast majority of CKD sufferers never get to the stage where they need dialysis/transplant and it’s quite possible that you may never deteriorate or it may be that your GFR may go down very very slowly. If you eat a kidney friendly diet (not overly restrictive, just careful) you can even improve your kidney function. I’ve been at stage 3 for nearly 10 years and have actually improved. I avoid processed foods, salt and fizzy drinks. I eat mainly whole fresh foods, lots of veg, drink water and avoid dairy (limiting is fine, I’m just intolerant to it). Don’t smoke and moderate alcohol use. Drink water and take moderate exercise. I’m not madly strict and will still treat myself, but try to be generally good. So please don’t panic and don’t go over the top with restricting your lifestyle!

[Barnhouse in reply to Julesboz]

Thank you so much Julesboz for those encouraging words

[JimVanHorn]

The answer is diet, diet, and diet.

[sharonlyn]

join natural kidney journey on facebook...i have been able to raise my gfr from 26 to 41 in less than a month...that was my situation it is different for everyone...this fb group is dedicated to changing your diet...supporting your goals and so much more...it is admin by a couple where the wife was able to get her husband off of dialysis...she raised his gfr from 3 to 39-41...he has been off dialysises for over 14 months...there is another person on site that achieved that same thing...plus numerous others who have raised their gfr significantly by diet and determination... here is the link... tps://facebook.com/groups/natural... answer the 3 questions when you click on the site to join or you will automatically be deleted...