Hi,
As a result of a recent routine blood test I was told that I have stage 2 ckd which put me in a state of shock, panic, denial, anger for days.
When I finally calmed down and accepted the news, I decided to fight back by getting information to help me reverse (if possible) or slow down the progression.
I am open to any suggestion but not interested in the 100's of magic potions on the internet that can magically cure ckd in 7 days.
thx
Hi there, firstly there are no magic cures for sale! And secondly, please let me reassure you that the vast majority of CKD sufferers never reach end stage requiring dialysis or transplant. Most stay at the same stage for years and don't progress or progress very slowly. Obviously it depends on the cause of your CKD which I don't know and how you manage it. I have been at stage 3 for approx 10 years and I've managed to improve my function over the last couple of years with diet and lifestyle. Most people on this site will advise you to eat healthily, avoid fizzy drinks, processed foods, salt, limit dairy and alcohol, give up smoking if you do, exercise and limit or reduce OTC medicines, particularly avoiding NSAIDs. Also follow the advice of your doctors. And above all relax and enjoy your life 
If you are a resident of the USA go to davita.com and look for the link to register for a Kidney Smart class in your area. It's a free 90-minute class that will explain many things to you and provides you with lots of useful information. If you live outside the USA go to kidneyschool.org/mods and at your leisure go through each module learning and making notes for your further research.
I know how you feel. But my routine blood test revealing a shock CKD3 was only noticed by me scrutinising test results and tracing them back annually, it had been marked up 5 years ago! The shock does die down. I gather your cardiovascular risk is higher than it would have been otherwise but I am waiting for the next annual test in February and will seize on any changes. I looked for a cause. Negative for high bp, cholesterol, diabetes, and other causes, so I am mystified.
Hi Trill, Things such as long term use of NDAIDs or infections can cause kidney disease. Autoimmune diseases such as Lupus or Celiac can also cause CKD.
Make sure to have your doctor check for protein leaks and hematuria in your urine. These are signs that you might have a form of Nephropathy. A biopsy can determine what type of kidney disease you have which in turn can determine the treatment plan. Generally nephrologist won't do a biopsy unless there is no obvious cause for the disease and you are having issues such as hematuria and protein spilling. Keep pursuing the cause. If you have any other medical issues it could be tied back to CKD. A nephrologist should be able to help you with that if you haven't gone to one yet.
Hi,
I am stage 5 and still angry & some denial....I found out over 30 years ago, I have PKD, polysistic kidney disease. I think what you are feeling is pretty normal considering but don't panic. Start taking care with diet & exercise. As Mr. Kidney advised check out Davita.com, lot of good information there. Just know you are not alone and depending on what your CKD is caused by you just might be able to slow it down or actually get your numbers back to a better place. Good luck and take care.
I am curious about something. Have you had 3 consecutive blood tests that show CKD? Usually this is the criteria for determining that you actually have CKD, among others. If it is a one time result, you could have been dehydrated or a number of things.
Yes. 2013, 2014, 2015, 2016, 2018! 2017 was just on 60 for creatinine so ok. Stage 3a.
Sounds like it is CKD. I've had CKD stage 3B for 6 years, twice dropping to stage 4 when I was severely dehydrated. I was in disbelief at first when I was diagnosed, like you. I now, after research from reputable medical websites, National Kidney Foundation, etc., am less scared and more determined to follow a healthier kidney diet, and get exercise to keep my stage from developing further. The serenity prayer is good to remember “God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.” I have peace with my disease and do not allow it to overcome my happiness in life. Coincidentally, this also keeps my blood pressure down as well as my stress. Bless you on your journey we are all familiar with. This is a good, informative, and supportive site.
It certainly is that, Sdtagoo. I have low to normal bp. There is no known reason which caused my CKD but in time I might find out after another blood test next year . . . I have reduced salt a lot. What else do you do? Oh and drink more. But the foods to reduce comprise a list which would seem to finish you off with malnutrition if you followed it, and consists of foods I love. Spinach, mushrooms, brown bread, peas, beans, potatoes, marmite and on and on. I have decided to make such sacrifice at this stage would be an over-reaction. You need balance! I do take on board the dehydration, especially in this sweltering weather.
You might want to move more quickly to have your next labs done. Waiting a year at this point can be counterproductive. Also, the whole point of finding out early that you have CKD and act to slow down the progression is to change your eating plan to have kidney-friendly meals, adjust and increase your exercise regimen and look at your medications to be sure you aren't taking something that may be doing damage to your renal system. That includes OTC items.
Thanks but what should I do then? GP had blood test done for protein. Can I not get the diet information from another source? I have just asked my doctor for so much so far this year and I simply dread her being impatient, and have already asked for a referral for my painful toe. I just can't face asking for something else if I can avoid it, Mr Kidney.
The doctor is there to serve your needs and the last thing you should concern yourself with is her impatience. If that's her issue find another doctor. You were told early that you have CKD. That's great for getting notified. Waiting a year for another round of labs is wrong. If she is put out by your request for labs to be drawn again in three months she is violating the cardinal rule of physicians. "First, do no harm." If your doctor isn't doing everything she can to help you then you need to find someone who will. I would also ask again after the next labs to have them done again three months after that. Waiting a year is not in your best interests.
You can go to davita.com and look at their drop down menu under Recipes for kidney-friendly meals that will help you deal with the proper diet on your own for now. Later, you should ask for a referral to a Renal Dietitian who will look over the last few labs you have had and help you develop a meal plan that is specifically designed for your needs.
I'd also suggest you get a hard copy of your labs and keep a chart of them. Use labtestsonline.org/tests-index to check the purpose of any results that are marked high or low of the range. While there will be some differences from lab to lab the range is a fairly standard scale and will let you know what you need to avoid or cut back on.
If you wait a year for the next labs and find a decrease how will you feel about losing a year that you could have made dietary changes as well as lifestyle changes and possibly had a less dramatic drop. It's your health.
All absolutely right, Mr Kidney. It's six months not a year, though, until my next renal test and please be aware that I have had 5 annual tests pointing out CKD3a and nothing was reported about that to me so I have already had five years of the disorder. If I get an opportunity to speak to my GP about anything else I will definitely ask about what you say.
Thank you for the links.
I do have hard copies of my test results and I have pored over them and compared them. For instance, I had to Google 'CKD3a' to find out what that meant! But heading each test result is a summary for the doctor which says no action is needed. When I did realise earlier this year that I had not been told my GP could not have been more apologetic and just told me not to let it get worse, drink plenty, and that was it.
Are you in the UK? Because here, CKD3 stage is treated at primary care level and only a Stage 4 would be referred to a neurologist. If you are not in the UK you might not know that our NHS is in a very poor financial and operational state.
I take what you say very seriously and much appreciate it. I will check out the links and use them.
Agreed!
I agree. If you have an impatient physician, by all means get another one. Inexcusable. I had an impatient, haughty physician and she is no longer my doctor.
Exactly correct Mr. Kidney! I am reading my exact thoughts here! Beyond truth! .
We'd be happy to send you some free information on diet and preventing progression of kidney disease. Simply contact our NKF Cares Helpline at 1-855-653-2273 or email: nkfcares@kidney.org.
NKF's information is the VERY best. It's why I am still here. Learn early learn from the right source. They have this great Dialysis Cookbook. I absolutely loved their chili! They gave me the chance to write a snippet about it. As you go through the stages there are different diets. The CKD diet is THE most important. But when you get to dialysis you have to restrict everything. Their cookbook is mainly spices but clever ways to use them as that is all you can have. I prepared a year ahead with the cookbook ahead of dialysis. It really helped. If at all possible if you have time and get the luck to know early... learn with it and incorporate it into your life then. Because to get wholloped with dialysis then transplant is so much. IF you can plan ahead it helps.
Get a new doctor. Inexcusable.
What's really inexcusable is my reluctance to come and see her quite yet. Well, you don't get appointments and actually see her: it's on the phone. I will though. As for not telling me about CKD, she was my new doctor from 2017 so only missed one, but the tests inexplicably say you have CKD3 but that the result is normal and no action is needed! Get your test results in hard copy, fully, folks.
I would see a Nephrologist too on your own. Network early.
It is hard but I eat normally with reduction in phosphorus, salt, no colas except for occasionally A&W Root Beer, and Sprite. I really have not stopped completely any foods, but limit the ones I am not supposed to eat. This has kept me in stage 3b for six years. Understand, this is what I choose to do, but may be detrimental to another person as we are all different.
actually 2 blood tests with over 1 year apart and both had the same results
Finding out at stage 2 is actually a gift, if you look at it that way. Now you can do things like diet and lifestyle to stay at stage two. Everyone loses some kidney function as they age. Do your research to find out what foods to avoid or limit. Keep track of your labs and do them often, not just annually. And keep asking questions. We are all here to support you too.
Agreed! Unfortunately, there is no cure for this, but we as people can take steps to try to prevent any surprises as well as take the best care of ourselves as we can.
See a nephrologist, have them do their own specialized testing.
Review your labs, make a list of questions; taking a notebook with you to write down answers and suggestions.
Look into a Davita smart class and check in with their dietician..
All of these steps will help to relieve your mind and move you in a positive direction.
Know that we are all here for you!👍
Finding out you are at Stage 2 is a gift as Bassetmommer said. I didn't find out that I had ckd until I was at Stage 3. This was in 1992 and by 1998 I was listed for a transplant. They know so much more now about kidney disease and how to slow down the process. I had a kidney biopsy and found I had FSGS - my kidneys were getting all scarred up inside. They traced it back to a strep/nephritis I had when I was 9. Be your own advocate. If your labs continue to show ckd, ask your nephrologist about doing a biopsy. Then do your research, and ask lots of questions. Find out what you can do to prevent progression. Mr Kidney gave some good sites to explore. Diet is something you can start now.
I had a transplant in 1999 and am living the good life. My creatinine remains normal after almost 19 years. Please know that just because I needed a transplant doesn't mean that you will progress and need one too.
It's good that you caught it when it was only stage 2. For some of us, we didn't catch it until it was much later. It's really important to address the CAUSE of the kidney function decline as soon as possible. Was your impaired kidney function caused by diabetes? Then get your blood sugar under control. Was your impaired kidney function caused by high blood pressure? Then get your blood pressure under control. Discuss the cause of your kidney decline and treatment for it with your doctor, as soon as possible. You should monitor the state of your kidney function, and this will require lab tests on a regular basis.
It used to be thought that CKD was caused by just blood pressure and diabetes. Now there are so many things that can cause it it’s difficult sometimes to pin it down. Mine was caused by the use of lithium for many years to control my bipolar disorder. Recently, I had a huge drop and my nephrologist thinks that was caused by too many antibiotics. I had an unfortunate string of urinary tract infections over the course of four months. Sometimes, if it’s not the typical causes which can be managed, it doesn’t really matter. It’s what you do now to take care of yourself.
What I learned from NKF in 2004 is that UTI's are quite common in early stages and could be a sign of the disease. Uh I am so sorry you got this from the LIthium! That is awful. So sorry.
I was diagnosed at stage 3 and like you I panicked, my PCP told me no need to make any changes to diet, my GFR was 46, I got a second opinion and basically the same advice but she suggested no red meat/soda which I haven’t eaten/drank for years, so basically I made hardly any changes , I try to eat blueberries as much as possible and cut out milk and use Soy instead in cereal, my recent lab work 2 weeks ago I went from 46 to 53, my Dr said it also goes by age and that my kidney is almost normal. Don’t panic and find your own diet that’s best for you, good luck
I am a living kidney donor and also listed at Stage 2 CKD. My doctor informed me that as a living donor with only 1 kidney and my age, this is normal. A few years ago my function had decreased tremendously and my doctor told me it was mainly due to dehydration. I was not drinking enough water on a daily basis. At the time I had NO IDEA the impact that water has on our kidneys. Now I am more conscientious about my daily water intake. A year after that visit and watching my water in take, my kidney function increased. Also a few years ago I had high potassium levels. I thought that I was being healthy by putting a banana and orange in my daily smoothies. High potassium is also not good for the kidneys and I had no idea. My doctor told me to switch out my daily banana and orange for an apple. I still eat bananas and oranges on a occasion but not on a daily basis like before and my potassium level is back to normal. A healthy lifestyle and exercise INCLUDING DAILY water intake will all help keep your kidneys healthy. Read NKF articles about healthy kidney foods (and foods that aren't good for the kidneys). Limit your sodium (salt), red meat, protein, and high potassium foods.
Jackson5419 First let me tell you how deeply sorry I am you have to experience all this torment. Reading your post from NKF on FB I had to join here and reply. I suddenly see myself in your post. Myself in particular in how you just made the most important move of your life - You are fighting back! That means you are proactive. Let me tell you that instant step 1 you just made will ensure your best outcome. I today am a Kidney Transplant Recipient. I was given 5 to 10 yrs when I got my diagnosis in 2002 and because of your statement above your exact reaction and approach I made it to 10 yrs before dialysis. There is much to learn but most of it must be done by we patients ourselves as we fight for our life. The reason I have my transplant is because I said the same exact words you typed above. Even on dialysis the reason I have my transplant is because of the shape I got in from the day I found out. Shape is not just the diet and exercise that I begun instantly once I learned. Shape is going through the experience of figuring out how to learn. How to research what places help me best and what I learned along the way. I was stunned shocked when I got my diagnosis as this came out of nowhere. in my case I was misdiagnosed but regardless of how it happened we patients are all one community once our kidneys fail. The first step is I collected every single record from all my doctors from my past. I then contacted the National Kidney Foundation of Greater NY by telephone. I then met someone who remained in heart forever, their Program Director Ellen. She is why I am alive right now. On my own down here, I found a nutritionist... 2 very nice ones but over a yr and a half getting so sick along the way it wasn't until after I reached I did my first walk for NKF, while seeking sponsors I came across, by fluke, a Nurse coming out of the door adjacent to my doctors office (that I would not know for years later, would be my dialysis center) told me I needed a "renal" nutritionist. At that time I never heard of that term. But because of my proactiveness because of NKF, because of doing the walk though living 90 min away, the journey led me to a pot of gold in information. This person who coincidentally I bumped into gave me the name of a Renal Nutritionist and as a result I was able to keep my creatinine and GFR the same for 3 yrs. I cannot stress enough that the reason I am alive is because of NKF of Greater NY. I found the most treasured relationships that lasted since 2002 and 2004 and I will never forget them. First they sent me from one phone call all sorts of incredible info. I then took the train to NY for a meeting which was beyond valuable. Their intern at the office then handed me a huge envelop of tons of information I am looking at right now in my bookcase. Their kindness, generosity, their humanity is the support that gets me through. They used to have wonderful Nurse Theresa who I would call all the time, even from the grocery store, who answered any of questions and offered so much more guidance. I never had to diet in my life, I never had a weight problem, and suddenly I have to learn how to eat. And this does come down to diet and exercise, not just the meds the doctors give me. It does come down to the fear of death, this new trauma and what I am willing to do to save me. In one of these packets I found from Amgen Lab Logs. Now I was told not many do this but this is what I swear by. They show all the types that is in your labs. I tracked my labs by transferring the information over to it and i asked for a copy of my labs every time they took them no matter if as some did seem I was a pain in the ass I am alive to tell about it. 8 yrs later right before dialysis I had a bad uti and went to the ER. They told me I could not take anything at that stage for the pain. But because I knew my numbers the ER doc was so impressed it gave him a moment to stop and think, and he said he would be right back he was going to check, if he can give me something at a lower dose. Low and behold he could. He had even as I knew my numbers smiled and quizzed if I new my creatine clearance I did. Today's healthcare is super busy and any help you can give the docs some appreciate. Others who do not like you have so much info, I merely learned to work around. I did not let anyone stop me from finding out what my body is doing and what I can do to help it. By tracking the labs early on when I first discovered these, (I know my numbers and still track even with my transplant) Being proactive is how I have this kidney. And the first words after my transplant from my coordinator i smy name and the most proactive patient I know. Through all this hell of dying you don't think of the praise by all the way through and now I kiss my thanking myself for getting involved in my care. This prevents me from falling through cracks. Though some things are inevitable, this no one can take from me. My Patient Rights. That is for another topic. But I am telling you, you just made the biggest step - You reached out to find out. You can the right place. Now i never been tho this cite before and just looked up at the title HealthUnlocked for first time. I saw your post on NKF on Facebook and instantly came to you in a blink. You are in shock you will be throughout. But your chances just improved greatly coming here. I did three things - I listened to what my doc would say, I then would listen to what NKF would say I then would listen my nutritionist would say to my question. Sometimes in the healthcare field Educated patients will receive push back because they don't have time for all the questions and they get annoyed. ANNOY THEM. So what. It's our body we have right to know. Take control. But the docs also can't give you all your info by law or by insurance or just don't have the time to give us all the info CKD Dialysis and Transplant require. We ourselves have to do that. On a side note, I had no support. I was the only and did that by myself through dialysis and the Transplant only the Tranplant Ctr didn't know that. I wasn't going to die. Period. But NKF was my support. I then found via them the names of dialysis centers and I went against my doc who didn't like to give out info early or too much so I just took the bull by the horns. I went to the center met the person at the desk, networked and because of the hell I endured on dialysis another topic for another time. I had known her for 8 yrs prior and as a result I got through that part by myself too. Its not that they can do anything but they can give you info and help you through serious stages. The dialysis center is different from your nephrologist. So though I may sound overwhelming but I am giving you a 10 yr journey here. Because of what I learned from NKF throughout the first few years.. when I went to the dialysis class early.. others in the class just found out dialysis was to start immediately. One was taken in right from class the other was a night RN who learned the year before but didn't realize. I went to the class at 29% GFR functioning. I did not wait. You can get on a transplant list at 20% I learned from NKF but the docs say 15%. That is the difference with the foundations. They can give you more info. I bought myself time because of them to learn and prepare. NOt many have that time. The fact you took this step you just bought yourself what we are racing against - the Clock. You just helped yourself make use of each second. The docs are great I stand by my doctors but they just don't have the time to give us what we do the other 23 hrs of the day to help ourselves. This is what NKF gives - their heart. They give us the info that give us the tools to learn, and gives us the guidance how to start this trek. And ever since my experience I tell everyone who gets sick go to The Foundations that pertain to your scenario. Information is key. It can be overwhelming but learn as much as you can tolerate and don't stop at one source. My doc didn't want me to know my GFR so early so I would ask the Nurse at NKF the Nutritionist and Him to see who would match my research. I found NKF and my Nutritionist were able to tell me early what I need. I found out at 45% I found out early and by that luck I was able to get in shape for dialysis. I needed to make sure my muscles were strong enough for it so I took a job at a convenience store as an Asst Mgr to keep myself moving and working my muscles packing out the groceries and running around. I called different places I learned of aside from NKF I found out diets I found out funding resources. I took time to freak out too. Its okay to. If you have support you can trust, bring them through the process with you. And the dead ends I reached. I took a breath, but got up and fought anyway. I never took no for an answer I simply found another center. You keep going you ask anyway. To me there is always an answer and I will be damned if I don't find it. I have to run but. Please keep asking the questions. I stand by NKF of Greater NY I thank them and Ellen and Theresa and all who follow them with every breath I take. I thank them for my life as much as I do my new kidney. Sending you strength support and love from me and my deceased kidney. I only went to NYC once. I spent the remaining 13 yrs on the phone. A phone call is all it takes from one heart on the other end. Oh and they recently had a symposium with the American Heart Assoc and the Diabetes Assoc and they all go hand in hand. Take care of that heart. Listen to your doc then find a renal nutritionist. Find what pertains to YOUR OWN health. That comes from Your Docs. THat part should ONLY come from your docs. Your diagnosis your body's numbers. Don't let anyone else diagnose you but your Nephrologist and other specialists in charge of your care. Do not let websites or anyone tell you that part. You can change docs but not the reality of your diagnosis. Learn and then let them know you know they will work with you throughout. Use all sources together. I will check back. In solidarity welcome to NKF and thank you for introducing me to HealthUnlocked. I haven't even looked at this cite yes i was and am on the way out the door. Just wanted to reach out to you. As NKF says.. with all my kidney LOL.
Don't panic. Ask your primary to recommend a Nephrologist in your area, if you have not already done so. I was diagnosed 8 years ago with stage 4 CKD and asked what happened to 1, 2 and 3? My Nephrologist put me on a low/no potassium diet immediately and I found the site Davita which helped me muddle through various recipes for the condition. It was a great help and food was still good. I maintained my numbers on this diet and did not require dialysis for 2 years. During this time, no matter what, my numbers went wacky and it was suggested I put my name on the transplant list and start dialysis. I chose to learn to do it myself since I live in the mountains and going to a facility on a regular basis was not feasible. I started dialysis and was not tethered to the house. Best thing I ever did. Then one early morning, 3AM, I received a call that there was a kidney matching me and asked if I wanted it. YES! Six years later, my kidney is working great. I do have one draw back though. I have arthritis and had been on nsaids for pain. All of this had to stop and so far there is no substitute medication. I'm being honest here. Even my doctor said some people opt out of receiving a kidney just to continue with their arthritis meds. I chose the kidney. My only complaint to my doctors when asked...how ya doing?, is to tell them my kidney is great, but arthritis stinks. Still getting around at age 69. Hope this helped and wishing you good luck and better health. PS, other responses are right on point, learn all you can.
I’m almost 68 years old now and have brought my CKD3a up to CKD2 by getting off all meds for pain and redux. I’m still on low dose BP meds but that is all right now. I have found an natural alternative for reducing inflammation and joint pain called turmeric golden paste and there is a group on Facebook you can join to learn more about it. I am also learning more about CBD oil, the kind that is not psychoactive, for help with pain.
Hey Jackson, no need to worry! I got diagnosed with CKD at the age of 8 and here I am 24yrs old today living a normal healthy life. I go see a kidney specialist every year and get check ups to see how I’m doing! All I really need to follow is a pretty easy diet. Which includes low sodium and little to no caffeine. My case is possibly a little more servere considering both my kidneys are damaged and the tubes connecting are as all and having high blood pressure. Please let me know if you do have any more questions! I’m free to answer all.
Have a great one!
Alyssa
Are you taking Lasix ,I do but my dr told me to get off them three days before test that it messes with test results .Sure enough the GFR was higher than before . I'm stage 3 . Hope your doing ok.
Read Dr John McDougall's post (use the search feature) at his web site. Animal protein is especially hard the kidney, as noted by him and several scientific papers,
Processed meat is the problem for many folks with CKD. Red meat is a problem for me and not others. Same with pork and poultry. My limitation is 8 oz. per day (but no red meat). Remember, each person is different and each person will have specific limitations based on their age, labs, and their current place on the CKD spectrum. Many authors offer very generalized information and not all they say can be the same for everyone. My suggestion would be to go with the specific information you get from your consultation with a Renal Dietitian and not what you get from an author with the specific intent on selling copies of their book. Of course, that's just my opinion and I could be wrong.
Can I start with, Julesboz is right. Mostly. There are an unfortunate number of people who don’t even know until they are later stages and that is a huge problem! I signed up for this group for the sole purpose of telling you that while you definitely shouldn’t blindly buy into every hair brained natural “cure” on the internet, you shouldn’t discard all of them either. It is shocking how much western medicine came from the derivative of something the natives or the traditional Chinese have used for a milenia. Do your research on just about everything you see. You will be able to discard most very quickly.
I'm at stage 3 change my eating habit became a vegetarian I'm been in this stage for 3 years hope his help
New results confused 
The Kidney Project
Trying to give docs the benefit of the doubt….
New to the community!
New to the community
