Advise around ckd 3a: Hi all I got diagnosed... - Kidney Disease

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Advise around ckd 3a

Vi9314 profile image
39 Replies

Hi all

I got diagnosed with ckd 3a (creatinine-1.4) in January 2022 and I m 27 year old. I consulted with nephrologist but they said there is no any treatment for now. I don’t have bp or sugar problem.

Since I just started living my life and now everything seems falling apart and I am loosing hope day by day like what will be my future. Please suggest some guidance.

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Vi9314 profile image
Vi9314
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39 Replies
WildIris profile image
WildIris

Hi, quite a shock, I'm sure. A lot to deal with for a young guy. First, make sure you have plenty to drink several hours before your blood test; if you're dehydrated, the blood components like creatinine will test as more concentrated. Creatinine tends to vary a bit between tests anyway. Second, while there aren't medicines for failing kidneys and we are told that slowing the progress of kidney disease is the best we can expect, many people on this site have made lifestyle changes that and have improved their creatinine levels. My first eGFR was 25, but I was quite dehydrated and subsequent eGFR scores have been over 50, with Creatinine about 1. I did completely change my diet, which was okay for me because I'm older and was overweight, and felt I'd had my years of indulgence, you might not be as ready to do that. 3a is the earliest stage nephrologists will treat, so that's good for you. There is a lot of internet advice, about kidneys and diet and snake oil as you've probably already discovered. Low salt, low protein, especially low to no animal protein, lots of water, lots of fruits and veggies. A kidney dietician to work with. Best of luck, all my sympathies.

Vi9314 profile image
Vi9314 in reply toWildIris

Thanks for your kind words. My last gfr was 64 and yes I have restricted my protein intake and low salt diet even I don’t have proteinuria issue.

But mentally I am kind of lost. Sometimes I feel like I lost my freedom and feels like whatever life I have left I have to leave all alone. I don’t want to marry and destroy someone else life as well.

Sometimes it’s very hard to accept what’s happening around life😔

RhenDutchess123 profile image
RhenDutchess123 in reply toVi9314

Alot of people ...who do some changes ...bounce around in the 3's and never go any farther....Just because you are dx as 3a Kidney Funtion doesnt always mean you have Kidney Disease...

 Stay hydrated...avoid salt and colas..no NSAIDs...get labs done every few months and enjoy your life....

WildIris profile image
WildIris in reply toVi9314

You're welcome. eGFR of 64 would be completely normal for me. I felt pretty threatened when I fist found out too, but its been over a year now and it its a minor part of my life that changed my diet for the better and hasn't progressed much and I can deal with it. Sounds like you're doing the right things, best to you.

Whitetail66 profile image
Whitetail66 in reply toVi9314

Hello, and welcome. From reading what you have posted, it seems to me that you’re overthinking things, as far as not wanting to get married, destroy someone else’s life, and having to live alone. I understand the overwhelming thoughts and worry, but my advice to you is clam down, take a deep breathe, and get those negative thoughts out of your head! (I know, easier said than done.) With a e-gift of 64 , you’re stage 2, which is mild ckd. From my understanding, if you don’t have high BP at your stage, sodium restriction isn’t necessary. Most people have ckd, and aren’t even aware. It is usually not diagnosed until stage 3 or worse, as symptoms really start to be noticed then At stage 2, I had no symptoms. The only way I found out, was having a good GP who was watching my creatinine level, and sent me to a nephrologist when it reached the upper normal range limit. I would say that if you eat healthy, stay fit and exercise, and monitor your numbers, you’ll be fine for a long time to come. There have been people that have had ckd for 20+ years, and haven’t progressed past stage 3. Chin up, young man. I wish I had an egg r of 64, and despite the claims by doctors that you can’t improve your kidney function, they are wrong. The man who has the website DadviceTV is living proof that you can improve your kidney function, as he was diagnose at stage 5, and has improved to stage 3b! He has a ton of information and short videos explaining a ton about diet, excessive, and ckd related things. He also says that the US seems to be lacking in the care of ckd, as other countries are much more proactive. And that word is key. Watch his stuff, research what you can, and apply what you learn to slow, stop, and possibly reverse the damage done. One thing that you have on your side is that you’re young, and the odds of medical science coming up with answers in the future, that we don’t have now, are pretty good. So hang in there, learn what you can and apply it, and you may be surprised that your life isn’t as ‘doom and gloom’ as you perceive it to be. I know it’s overwhelming at first, but I have a feeling that you will do WAY better than you believe you will. Just my opinion, but I hope this helps in some small way. Best of luck to you!

Vi9314 profile image
Vi9314 in reply toWhitetail66

I really appreciate your kind gesture.

Ya I m trying to keep myself busy and accepting things. I will also follow up with the Dadvice Tv information. Thanks a lot

RonZone profile image
RonZone in reply toWildIris

Hey, since I may be on a high protein diet soon doing PD, what, in your opinion, is the best source of high plant protein? Just curious what others are using for that so I have a full arsenal of protein products on my list once I get to that point, possibly soon if cycler PD works.

WildIris profile image
WildIris in reply toRonZone

I make a vegetable soup with legumes and tofu and vegies. I really like the tofu, though I didn't before I was vegan. I take an amino acid supplement and a couple of the expensive 5 gram non-nitrogen protein pills from kidneyhood.org, run by Lee Hull who has CKD and wrote a book about his experiences. These pills are about a dollar each and he recommends 6 a day to supplement vegan protein. I also eat nuts, maybe a quarter cup total. I'm on a low calorie vegan diet though, probably on a normal calorie diet you wouldn't need the supplements.

RonZone profile image
RonZone in reply toWildIris

Soooo, how do you offset the higher potassium and phosphorus in the legumes and tofu and nuts? Seems you can't have higher protein without a whopping amount of P and P??? Makes it difficult!

WildIris profile image
WildIris in reply toRonZone

I have never tested high in potassium. I do soak the dry beans which leaches out half of the potassium. Nuts vary a lot in potassium content, maybe I shouldn't eat so many. I drink plenty of water.

RonZone profile image
RonZone in reply toWildIris

Once I start PD full blown, I'll have to try your diet ideas and see if my potassium stays in the "ok" range or shoots through the roof :-) My phosphorus is already high, so I've started taking binders for that, which hopefully will do the job once I start eating more protein.

userotc profile image
userotc

I agree with most of the comments from whats (except for dietician, below). My mum is one of the examples indicated, having gradually improved her eGFR from 36 post-nephrectomy 2017 to ~60 now - via natural means only.

As you've indicated and we all know, medics cannot help much (if at all) until you're at dialysis stage which can be avoided via natural means. Even BP and diabetes can be resolved naturally if they are an issue (not for you)

So I would highly recommend you consider a qualified Naturopathic Nutritionist to resolve your issues (and maybe others). One that specialises in CKD would be best. In our experience, dieticians are too close to medics which we all agree they are limited, at best!

PS I applaud your nephrologist for honesty. Mum's continues to consult with her annually with nil impact eg NO credit for her improvements.

KidneyCoach profile image
KidneyCoachNKF Ambassador in reply touserotc

Dialysis in many cases cannot be avoided via natural means - PKD, IGA, ALPORTS and more. Many cases of high bp and diabetes can be helped but not necessarily resolved or reversed. To say medics and dietitians are useless in generalized terms is quite unfair. Truth be told nephrologists are far more educated regarding kidneys and co-morbidities than most naturopathy. I know the several naturopaths I've seen tried to treat me with things that would have done FAR more damage than good because of limited knowledge of kidneys etc.

For the original poster, your life is not over. Please read up and research all you can and make educated choices based on your needs and desires.

I highly recommend

kidneyschool.org

nkf.org

aakp.com

akf.org

userotc profile image
userotc in reply toKidneyCoach

Mum had high BP (took bispoporol for several years until end of 2017). By natural means, she weaned herself off and has been ~125/75 since, regularly monitored.

Maybe you didnt see the most appropriate, qualified naturopaths eg kidney specialists.

We all have different experiences e.g. my mum's nephrologist has been of little/no value for 5y +. I didnt use the word "useless", as you did, but limited certainly applies.

KidneyCoach profile image
KidneyCoachNKF Ambassador in reply touserotc

Yes, I saw all qualified, appropriate naturopaths. Their advice was dangerous. I've no doubt there are good ones out there but properly balancing out healthcare - well I would encourage it. I've had great nephrologists and several who were the opposite. It happens everywhere in life. The good thing is we can always change/upgrade to better care where possible in being our own health advocates. That's where doing due diligence is key. Blessings

userotc profile image
userotc in reply toKidneyCoach

Indeed Due diligence is key in selecting naturopaths etc but sounds like you were either unlucky or that your diligence was found wanting if you had a few poor ones.

In mum's case, her NHS nephro was supplied. When we realised he limited his input to stating "carry on doing what you're doing", we considered replacing. That despite others'negative comments on here re their NHS nephros and the likelihood that it is more difficult to change one

But, based on excellent results to-date using my naturopathic training and experience, we decided not to, at at least at this stage. Cheers.

KidneyCoach profile image
KidneyCoachNKF Ambassador in reply touserotc

Well I see you are in the UK and I am in the U.S. so perhaps that makes a difference. I'm sorry you feel my "due diligence" was "wanting." Nonetheless I've been at this for my entire life really when my Father was diagnosed and later began home hemodialysis back in the late 60's. Sigh. I apologize if my words offended, just trying to encourage original poster to explore all avenues not just one or the other. Blessings

userotc profile image
userotc in reply toKidneyCoach

No offence taken nor indeed suggested from me re naturopathic selection - just option(s). Take care.

RhenDutchess123 profile image
RhenDutchess123 in reply toKidneyCoach

Many times people forget that not everyone loses Kidney Function for the same reasons....and like you said, some can change their numbers with diet and some simply cannot...Kidney Disease is definetly NOT one size fits all....

drmind profile image
drmind in reply toRhenDutchess123

so true. we get on this site as if we're all alike in terms of disorder, stages, lab work. And, we're not. We're all different, but there are SOME commonalities. Vi314. do repeat lab work and pay attention to healthy renal diets for your stage and your lab work. Stay hydrated and say away fro Nsaids. You'll be fine. Dont add stress to your existing health as that's a factor that a lot of us ignore.... Best to you and keep us posted on your progress.

Sarah_402 profile image
Sarah_402

Hi Vi9314, Since you are really young, I would hope your physician would try and figure out why you are in stage 3. I was in my 40s when this happened and my doctor did a kidney biopsy to find the cause. He told me at the time that some things are treatable. I don’t know what conditions he was referring to though. Mine turned out to be low blood pressure, so now I’m on medications to help with that. So it did not cure me but now we are treating the cause of the damage.

If they have not told you the problem, I think you you should ask your physician (or find another) to investigate the reason your kidneys are not working as they should. As others have already mentioned reducing the work load on your kidney could be helpful such as a low protein, plant based diet.

Vi9314 profile image
Vi9314 in reply toSarah_402

Thanks for your suggestion.

Yaa actually my nephrologist don’t want to do kidney biopsy for now as feels like that if we will do biopsy at this stage then we might not get anything from that. He want to wait for that.

I am also worried that we are not able to find the reason even I checked with multiple nephrologist.

Sarah_402 profile image
Sarah_402 in reply toVi9314

So the kidney biopsy is expensive and sort of invasive since they have to get some of your kidney tissue to analyze. I’m not sure why your physician is convinced it will not show anything though.

The other thing you could do is either ask for a cystatin C level or order it yourself on walk-in labs online. It costs about $109. Do you happen to have a high muscle mass? It’s another test to measure eGFR, to see if it also says you have a low eGFR. I ended up doing this because I lift weights, and cystatin C is less effected by muscle mass than creatinine is. At least that is how I understand it.

In my case, the cystain C level confirmed my eGFR was lower than it should be. You have to go by what a normal eGFR is for “your age.” My eGFR should be around 90. My creatinine labs make it around 45. My cystatin C makes my eGFR 60. Plus the biopsy confirmed a diagnosis of tubular injury.

So you could try a cystatin C level but it may lead you to asking more questions, especially if you order it yourself. Ask your physician if they are willing to order it. I ordered it myself because my doctor didn’t order it and I never told anyone, because it confirmed I was on the low side. I also ordered at kidney function test too at the same time so I could see what my creatine level was on the same day.

Maybe also get a second opinion. Also I just read your dad had a kidney issue, can you find out from him what his cause was? My mom has it too but her reason is different than mine. Some kidney disease are genetic though I believe.

Marvin8 profile image
Marvin8 in reply toSarah_402

If you look at my past posts, you'll see that I'm a huge supporter of getting your Cystatin-C tested, but you should know that even if you have small issues with your thyroid, it could render the test useless or misleading. Getting a full thyroid panel done is a smart idea, THEN go for the cystatin-c test. I'm doing that again next month. Last time I checked, my Cystatin-C gfr was more than 20 pts higher than my creatinine gfr.

Sarah_402 profile image
Sarah_402 in reply toMarvin8

Hi Marvin8, so do you know if that applys to PTH levels (hyperparathyroidism) we sometimes get cause of the chronic kidney disease. I know my PTH is up a bit, so maybe that could skew my cystain C?

Marvin8 profile image
Marvin8 in reply toSarah_402

Hyperparathyroidism caused by ckd is exceedingly rare. HyPOthyroidism, whether it be clinical or subclinical is much more frequently seen in CKD patients. Here, knock yourself out. :D

ncbi.nlm.nih.gov/pmc/articl...

Sarah_402 profile image
Sarah_402 in reply toMarvin8

thank you:)

Vi9314 profile image
Vi9314 in reply toSarah_402

ya last time I checked eGfr with cystatic c was around 64

If it goes down in near future then I will definitely going to ask my nephrologist for kidney biopsy as now I feels like that’s the only option to get the reason behind kidney function decline.

I discussed my father bipsy report with Doctor it was CIN and doctor said like without biopsy we can’t confirm that same is with me

Hello67 profile image
Hello67

I’m so sorry that you’ve been diagnosed with ckd at such a young age. I’m much older than you but I’ve been able to improve my egfr from almost stage 4 to 3a, 7 points from stage 2, over 9 months. I eat very little protein, lots of fruits and vegetables and do allow myself some goodies. I have found in my case that I need to drink between 9-10 cups of water each day. I do not eat red meat or pork. I eat a limited amount of salmon, tuna fish or chicken at times. I quit drinking diet pop which took away cravings for sweets. I’ve lost weight and I believe that has also helped my numbers. I also stopped taking Prevacid & ibuprofen or any drug in that class bc it can damage kidneys. I do take Pepcid most days for my reflux which my neph approved. The reason I am telling you about my experience is to give you hope and to let you know that your ckd can improve. Please make sure to drink enough water every day even if it’s the only change you make.

I do have a question for you, have you had an ultrasound or other tests to find out why you have ckd? Has your nephrologist told you what caused your ckd? Best wishes and prayers for you.

This is a great site and the caring people on here have helped me with their guidance and knowledge. God bless 🙏🏻

Vi9314 profile image
Vi9314 in reply toHello67

thanks a lot for giving hope.

I did ultrasound but everything looks normal there. I did DMSA scan as well and that’s also came normal. My father had kidney problem so most probably I got from him.

I tried connecting to multiple nephrologist but nobody suggested any reason. Biopsy also they don’t want to do for now. They told me to wait for some time then they will do biopsy.

I am following strict diet but it’s just that I lost all my excitement of my life. I just started my carreer with a nice job and these things came up so sometimes I feel like quit this job and live some normal life. I wish I have got some more time without this so I should have enjoyed little bit of my life more. It really hurts everytime I think about my future.

Darlenia profile image
Darlenia in reply toVi9314

Please be very careful that you're not harming yourself when making diet changes. Many encourage going on the "renal diet". However, that diet can interfere with proper cardiac function and more since it manipulates an lowers electrolytes. Unless your labs reflect these things are out of normal range, you may not need to make any dietary changes. My labs were in the normal range when I went on the "renal diet" to support my hubby with kidney disease. Unfortunately, my sodium and chloride levels plummeted and then, one day, I passed out repeatedly in a restaurant. My heart rhythm was off kilter and my blood pressure was too low. (Low blood pressure can also damage kidneys.) My personal doctor was very unhappy with me and it took a while for things to straighten out. My personal opinion is that the "renal diet" should be followed only if your labs indicate the need to do that. When in doubt, I would highly encourage seeking the advice of a doctor or nutritionist who can review your file.

Hello67 profile image
Hello67 in reply toVi9314

you’re welcome, you should have hope. You have your whole life to look forward to. Don’t let this ckd diagnosis take away your enjoyment for life. Try to see the beauty and goodness all around you.. I’m learning to do that even at my age. I was afraid and upset about my diagnosis too and I thank the Lord that I found this forum with people who gave me hope when I needed it and calmed my fears. There are a lot of great replies to your posts too. I pray they all help to give you hope. I am sure you have family who love you and are proud of you. Congratulations on your new position! Don’t let anything take away the positive things in your life, God bless 🙏🏻

KidneyCoach profile image
KidneyCoachNKF Ambassador

Tis the wind which moves the sail on the ship but the rudder which tells the way it should go - you control the rudder. The only thing stopping you from enjoying life is you. So you have a hurdle now, jump over it and get on with the living my friend. I was diagnosed with CKD/PKD 42 years ago. I've married, had kids, traveled, gone to school, had jobs and moved all over. The enjoyment is in the mind. Enjoy it all. You can do this!! Blessings

Vi9314 profile image
Vi9314 in reply toKidneyCoach

wow. Feels amazing after reading your comments.

RonZone profile image
RonZone in reply toVi9314

Throwing my 2 cents in here. I'm stage 5, eGFR 5.8 at last labs, have my PD catheter in ready to start Peritoneal dialysis, and every time I read a post like KidneyCoach just posted. I say "Dang Straight". Do NOT let this whole CKD run your life. YOU run it! Do what you have to do for it, then put it out of your mind for the day, go play tennis or something after work. But then, if it starts creeping back in on you, come let KidneyCoach or one of the others on here slap you up side the head with their positive attitude stick and back to normal you go :-) (I've got several knots on my head from that stick----it works!)

Marvin8 profile image
Marvin8

I was diagnosed six years ago when my gfr was at 58. Since then, it has bounced back and forth between 52 and 56. Two nephrologists said that I likely have some mild nephrosclerosis...ie...hardening of the arterioles and capillaries leading to and within the kidney. My current neph said that in 20 years of practice, he's never seen anybody in my condition progress to dialysis. He said that if somebody is to have ckd, mine is the best kind.

The biggest question I had for him was whether or not I should be on Jardiance or Farxiga, both of which are SGLT-2 inhibitors. It's the latest and greatest class of drugs to slow the progression of ckd, but they're primarily for diabetes. I don't have diabetes, but Jardiance just changed their advertising to include non-diabetic ckd. My neph said it's truly a miracle drug and that he tries to get most of his patients on it. The problem, he said, is that it hasn't been test on ckd patients who don't have protein in their urine. Because of this, he was loathe to put me on it. "Come back in a year for another CMP (complete metabolic panel) and spot urine test." I told him to put me down for 6 months. Try to relax. Your condition might not be as bad as what's going thru your mind. My doc said I'm doing everything right...staying hydrated, eating a Mediterranean diet, low salt, and exercise.

drmind profile image
drmind

Look things happen in life and you have to learn to deal with them. Dont give up on your life now. CKD is a disorder that has ways to deal with it and stay its progression. Yes, its not great that you may have it, but stop and think that its better than other disorders that could come up where you cant slow their progression. So you have to drink more water and change your diet to meet your labs and watch your health more closely. These things can be a pain, but they're livable. My grandmotherused to day if everyone threw their problems in a pile, you'd run and get your own back once you see what others are dealing with.

You got this. Welcome to life. Enjoy your new job and all the new things that will come by: some good and some not so good. Educate yourself and learn to live within your boundaries. Theres still lotso of good life out there. Keep us posted on your journey. We're all on this ride together.



S_dillow profile image
S_dillow

i agree.i dropped five points in a months time...down to 45 but thats not stopping me from living my life i have too much to do

RoxanneKidney profile image
RoxanneKidney

Change your diet. Go vegan and lay off the salt. No alcohol or soda. Live clean.

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