New CKD Stage 3 - opinions please

So glad, but overwhelmed w/so much info, to find this site. Just diagnosed w/Stage 3 CKD & sounds like many like me: Scared. I'm an active 69 yr old, 80% vegetarian, normal weight w/none of the typical symptoms for CKD, can only figure it's reflux & past pain medications or my love for sugar (not diabetic :-) The only thing the Nephrologist said was to watch sodium. It's not so much the death ahead but the decline of quality of life that I fear. Totally confused Creatinine levels 2016 .86, then 2017 1.02 & 1.04 then down to.96? Dr. said I'm Stage 3? How did I get here?

Not sure if my tiredness, toilet 3x night, burst of sweats are caused by this. I don't know what to do to help myself other than a slight change in diet. Take baby aspirin for slight artery condition, 1 low dose of Gabepentin & OTC antihistamine, Calcium.

Have only mentioned this to a few people as I'm in the crying stage. Would appreciate any suggestions.

20 Replies

  • I also was recently informed that I am at Stage 3A. I suspected I was at Stage 2 after reading the small type on a lab test that seemed to indicate Stage 2 CKD. The doctor never mentioned it until I met with a different physician and had it confirmed and then the first one said that he didn't think it (GFR) was a reliable indicator. Enter a new doctor (nephrologist).

    About 20 months ago I decided I had to lose weight and so far I'm at 134 lbs. lost. To do that I stopped eating all of the "bad" things and switch to "healthy" foods. Several months ago when I got the confirmation that I was CKD I also found out that I was eating the wrong things. I found and had an appointment with a Renal Dietitian. The foods that helped me lose 134 lbs. (130 at that time), were no longer good for my kidneys. I had to make a major switch to kidney-friendly recipes. I did this and finally, have begun to lose again and so far another 4 lbs have been lost. I am allowed 8 oz. of protein per day. I have to eliminate many foods that contain potassium, phosphorus, sodium, and calcium. All of those items while they can do damage to your kidneys are also needed by our body. It is a balancing act to not eliminate them 100% but to not overdue their elimination. Labs about 4 times a year will help prevent getting too low or too high.

    I also don't have any of the many symptoms that others have issues with. I do have Type 2 Diabetes but it is controlled by diet and exercise and hypertension with only one med for that. With all of that my GFR at the last labs was at 35.

    We are the only ones who can make the decisions that are best for us. Yes, there is a lot to find out about and there are a lot of places to find information. I'll give you a few to go to and find out what you need to know about for your specific situation. Doctors may recommend but the final decision is on us.

    You'll find a lot of great people resources here that will share their stories and answer any questions you may have. If you want any other resources let me know.

  • Thanks for the feedback & glad to hear you're on a healthy path. Sounds exactly how I found out about CKD. Later I reviewed old blood tests I mentioned above finding Stage 2 which doctors never responded to then a later test didn't even mention Stage 2 then a year later Stage 3. I read that diabetes & high blood pressure are main problems & I don't have either 5'7", 145#, exercise, walk, yoga, 80% vegetarian, non smoker, social drinker, low blood pressure.?? I'm thinking an Asian diet might be better & will look for recipes for CKD? Has any one researched how other countries treat CKD?

  • Hallo Whitey 123, Sorry to read about how you felt when you received your CKD diagnosis.

    Yes, it seems a common theme among us on this site that one is told in a casual, off-hand way so that until the research is started, the complexity and serious side of it all is not realised. I remember when I was told I had CKD 18 months ago I lived on cottage cheese, blueberries and white cabbage for the first week as these were the only things I could find suitable for my new kidney diet (the only dietary instruction I was given by my GP was to cut my intake of potassium, but she had no insight on how I was to do this!!!).

    I live in the UK and have never seen any facts or figures about my own CKD, although I realised later that I had been monitored for it for at least the previous 5 years. When I finally got to see a doctor at the Renal department of our local hospital (after a routine wait of 8 months), he told me not to worry about my GFR figures as they fluctuate all the time for many reasons, and that I was stage 3 (I don't think we have a and b stages in UK), and at my then age of 75 it was not at all unusual to have this problem and that I could stay at the same level for many years (and some of the people on this site have done just that). After an ultrasound test, I was told I have only one functioning kidney,and have always had this - my brother had been given the same information a year prior to me) .

    I feel that compared to many of the people I read about on this site, I (and my brother, though he has other health problems I do not share) am fairly lucky as I follow my own put together low potassium diet, which is a little boring but it suits me - and do not seem to have any discernible symptoms at present, although before I started the low pot. diet I did have muscle aches and pains, and got out of breath when walking round our rather hilly district. It helps also that I have lost more than 28lbs (with more to go) and so feel more inclined to leave the car behind and walk around! In fact I feel healthier and more lively now than ten years ago!

    Sorry I've rambled on a bit, but hope all this helps you to get things sorted out in your head so you will at least sleep better, and therefore feel better. Curleytop1.

  • Thank you for sharing your info. So happy to hear that 18 months have passed & you are still in Stage 3 - that's encouraging. Also, it's great that you are feeling healthier now. I don't have to lose weight but sounds like I might have to change my diet. Good luck to you & your brother. Please keep me updated on your progress. Also, do you discuss this with your friends & family?

  • Hi Whitney

    I hope my little experience can put the smile back on your face. I'm 46 with Stage 3b GFR 35. I do have high blood pressure.

    However, the symptoms are completely silent. I feel fine. I'm a full time working parent of 2. Doc says his hope is that I can just remain at this level. So I'm doing my best to watch my diet & I go to docs every few months to tweak the blood pressure pills. I also have IgA nephropathy... also silent. I laugh, I pray & I try not to dwell on it because it seems that we have very little control over CKD. Doc even says... he can't explain why this happened to me. When u see how many millions of us are out there walking along side us, it's pretty encouraging. Think of it as a secret club 😉

  • Millions to share support to one another :-)

  • Agree with you. That is good way to look at it. My Doctor too told me goal was to stay off dialysis as long as possible.No need to dwell on whys and wherefores.

    I also have neuropathy and dealing with it.. Recently finished successful Physical Therapy and have assigned routine which helps greatly.

  • Hi whitey123 - your scenario sounds much like mine. I'm 57 and female Caucasian....I'm currently on vacation and fretting much over eating healthy but also giving myself some leeway. I am due for blood work on my return to confirm level 3a. Do you or anyone else out there know when best to get blood work done to get the most accurate reading, especially after being off track a certain amount with eating/drinking? I have spotty WiFi here but love to catch up when I can!

  • Hi whitey i can fully understand your feelings i am 67 and being diagnosed with vasculitis nearly 2 years ago it left me with my kidneys damaged and i am Stage 3/4 CKD which hit me like a hammer when i found out i must say and obviously now have the permanent worry of the future.I have to say though i spoke to dietician at my hospital and she gave me a lot of good advice in terms of no salt,reduced cheese,no processed food and so on and i have to say since i changed my mind set i am stable unless my vasculitis comes back and this affects my GFR.Please think positive it is hard but most of all talk to similar people especially on here we all can help each other,Good luck

  • Everyone seems to agree diet is #1 .. Fortunately, before I found out about this I was weaning off of processed foods including canned goods. I don't use a lot of salt but had also started watching sodium contents. As I mentioned weight hasn't been an issue for me but I was eating LOTS of sugar. Thanks

  • Don't freak out yet. You can slow the process by learning all you can from your nephrologist and dietitian.. don't stress. Slow down and enjoy your life. Attitude is everything.

  • My nephrologist just said watch the sodium, I'm not dying & another script for blood test. I'm trying to avoid the blood test fearing it might go higher.

  • :-)

  • Whitey 123 Welcome to our CKD forum you will find it very helpful: I will share with you my story. I am 76 years old and was diagnosed with CKD stage 3B. I am in good physical shape for my age and CKD was last thing I would have thought for a medical condition. I have been on a Doctor prescribed renal diet and now for over 1 1/2 years and with prescribed exercise (do Silver Sneakers program) the level has stabilized. I found it was more important to realize that it is what I can do than why I got it. In my case my Doctor told me probable cause was organic (prostate problem related, BPH), There is much assistance out there. Encourage you to discuss with your Doctor what treatment program is right for you. If your Doctor has no plan, get a second opinion. Hang in their on your CKD journey.

  • Thanks- so lucky to have found this site. :-)

  • Thank all of you for your comments. It appears that perhaps there are stages of emotions & if that's true, I'm still at the newbie which is why I'm crying as I'm reading. I have been keeping as busy as I can so I don't have to think about "me" every moment.

    Reading all of your comments makes me feel I'm not completely alone but at the same time now I feel for all of our futures. From your comments I understand my Dr's "you're not dying" - at least not yet. Sounds as though Drs have no idea how long expectancy is for Stage 3? Just wonder what the average is?

    Guess, I'll go to my GP & ask him about dieticians, unless someone can recommend a good "easy" cookbook. Perhaps, I can still plan a vacation next year? Think I'll go for a walk & try to clear my head - again.. THANK YOU & WISHING EVERYONE A HEALTHY FUTURE.

  • Yes whitey123 most of us have emotions when confronted with a disease like CKD. The goal of my GP and myself is to stabilize condition as long as possible and at minimum slow down the disease. There is a good book on acceptance of CKD by Mathea Ford

  • Hi Whitey,

    Welcome! Your creatinine levels are within normal range. From my understanding the lower the better. It's your GFR that you want to be high. what is your GFR? Why is your doctor saying you are stage 3? What is the cause of your CKD? Answering these questions might help a bit.

    My story is similar to yours. I am fit, not overweight, exercise refpgularly, never had high blood pressure or diabetes or high cholesterol, but love sweets. In 2913 I developed hematuria which led to years of various testing. I was 46 at the time. I had a GFR of 51 and asked about it, but was told it was nothing to worry about as it could be caused from a number of things like infection etc. so I was basically in stage 3, but didn't know it yet. Fast forward several years and I was sent to a nephrologist who suspected I had IGA Nephropathy a type of CKD.

    After a year or do I developed protenuria. In the meantime my GFR increased to put me in stage 2. I finally had such a large protein leak that a biopsy was done and it was determined I did have IGAN. Since then my GFR has bounced around, but stayed within stage 2.

    I also did have fatigue and peed a lot at night. Now I take melatonin and listen to meditation music as I sleep and stop drinking water an hour before bedtime. getting good sleep has helped with fatigue a lot.

    It's really hard to cut out the sugar, but it causes inflamation and fatigue. I've read the book "the Mood Cure." Which discusses the fact that people who crave sugar need more amino acids. I am in the process of doing some testing then will be discussing the supplements suggested in the book to see if it will help.

    Also, there have been studies that show Gabapenton as well as aspirin ( though I think baby aspirin is fine) and ibuprophin and other NSAID can cause decreased functioning. Not sure if the low dosage you are taking would be an issue, but something to look into. By the way, this antihistamines can be bad too. Try using a saline nasal spray or jetty pot instead.

    If you have no known cause such as diabetes or high blood pressure, it could be hereditary or caused by an infection along the way. There are many reasons and then there are also undetermined reasons. In my case it developed slowly over many years.

    It is helpful to learn as much as you can, then go back to your doctor with a list of questions and don't back down until you get the info you want. Even if you don't have high blood pressure, I would keep track of it now so can see if it goes up. I always had low bp, but it went up recently sips I'm on low dose bp meds to control it.

    The thing with kidney disease is that it's chronic and will be with us for as long as we live, but we can slow down the progress especially at your stage. You may never have an issue since you are already living a healthy lifestyle.

    Yes! Plan your vacation! Have fun, live life, enjoy! There are people on here who are on dialysis that work and travel and enjoy life to the fullest, but you have a way to go before you reach that point and you may never reach that point.

    Sending you hugs. The more knowledge you have, the more in control you'll feel and the fear will subside. We've all been where you are. The initial shock will pass.

  • I joined this site a few months back and it's been helpful.

    Be carful with Gabapentin, this med is NOT kidney friendly. I found this out after my PCP raised the dose due to my Neuropathy from 300mg 3X a day to 600mg 4X a day. My kidney was not able to clear it and it became toxic, putting me in the hospital.

    Maybe i missed it, but what is your eGFR ? Your creatinine levels look fine, wish mine were that low. I understand you're upset, but from everything I'm finding out, you don't need to be. I'm not a doc, but by what you showed, you're going to be just fine. Keep yourself hydrated, keep away from salt & keep a good BP.

  • hi dont panic.i would sugest.paying for a private kidney specialist for another opinion you doctor cant refuse to make an referal it will be the best money you have ever spent..i left it to late..and have transplant which is going well but best to avoid if posible ..all the best regards chris

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