I was just told I am 3a ckd and looking for... - Kidney Disease

Kidney Disease

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I was just told I am 3a ckd and looking for guidance as the internet research has scared me

Murch profile image
22 Replies

First I am not sure what I’m doing and very freaked out. I’m 49 years old and my primary care doctor told me there really isn’t much to do but sent me to a kidney specialist who told me I am stage 3a with a egfr of 56 today. Told me to drink lots of water, watch what I eat, get an ultrasound and come back in a month. In June of 22 I started treatment for high blood pressure and now have it under control by taking a pill each day. I have also lost 32lbs since then in my quest to eat better and control my blood pressure. I still have some weight to loose I’m at 209lbs now and I’m 6’2 and very active.

Since I wasn’t given much advice I decided to research online and we’ll all it does is scare me as there isn’t much about living with it.

Sorry for being long, I just am lost and hoping others with the same experience can help ease my mind and give me some positive hope.

thanks for understanding

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Murch profile image
Murch
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22 Replies
dusty444 profile image
dusty444

Hi Murch,

I feel your stress. Only last Friday did I find out my levels are way off, another blood test today and I get the results this Friday. All of my levels were in range last November. I have since found out the prescribed Nexium causes kidney disease (been on it 3 years), ibuprofen also causes kidney disease (specialist said to take it for arthritis and then for PMR pain) then the clincher, I had Covid for the first time after Christmas and guess what. Yep Covid research says it can cause kidney damage/disease. So that is where I am now and like you all I can find is to eat better, exercise etc etc.

On Friday I will push for a referral to a nephrologist and a specialist dietitian. I am 62 and not ready to give up for a very long time.

Porter20 profile image
Porter20 in reply todusty444

lots of water 64oz. a day. Best thing you can do and no salt. Read labels salt & sugar are in everything you do not cook from scratch.

CreativeWriter profile image
CreativeWriter

Hi, last October I got diagnosed with CKD stage 3a, underactive thyroid and high blood pressure (and Vertigo) and was given very little to go on, which made me go into panic mode, as I knew little about any of them. When looking at diets for each one, they don't serve the other conditions well. My readings for CKD after Christmas went down lower into Stage 3b, but my GP has said until I get down to stage 4, they won't refer me to a nephrologist. I'd like some advice on how to manage all 3 conditions in a way that compliments and doesn't damage me further and so far this hasn't been forthcoming. Out of desperation, from reading other people's stories and getting advice, since Jan, I've cut down on meat and dairy, increased my fruit and veg intake and started walking for 30 mins each day. I won't know if it's worked until my next blood test but I am feeling better in myself. The Kidney Care UK website is useful, but be mindful you won't need to follow the renal diet until you get to lower stages.

ICE187 profile image
ICE187 in reply toCreativeWriter

Are you being treated for hypothyroidism? Hypothyroidism causes a 40% reduction in kidney function. Once on the correct dose of levothyroxine, the kidney function is reversible.

CreativeWriter profile image
CreativeWriter in reply toICE187

I am, yes, but my kidneys have declined since (although that may be due having a blood test straight after Christmas, which was never going to be a good idea :) )

ICE187 profile image
ICE187 in reply toCreativeWriter

I had the exact same issues you listed and more just prior to my hypothyroid diagnosis. My eGFR went from the high 90s to the low 70s within 2 weeks. Then it kept dropping. I started Levothyroxine and had my dose adjusted every 6 weeks. It took about 8 months, but my eGFR is back up into the high 90s. Funny thing is, if I eat gluten or have any dairy, my immune system attacks my kidneys now. I haven't been diagnosed with Celiac disease because I refuse to eat Gluten to test for it. I just assume to stay away from Gluten all together. Hopefully you can get it all straightened out.

orangecity41 profile image
orangecity41NKF Ambassador

I know when diagnosed it was a scary. I went to a class given by Davita for CKD. It was very helpful. Go to Davita.com and check education for a Kidney Smart Class. It will also give you an idea on questions for your Doctor. Education is a big help. Keep us posted on your CKD journey. Welcome to the forum.

Murch profile image
Murch in reply toorangecity41

Thank you I signed up for one today

orangecity41 profile image
orangecity41NKF Ambassador in reply toMurch

Great you will get much information.

WinJ3 profile image
WinJ3

I know how you feel. This is scary stuff and nothing to play around with. The good news for you is your early diagnosis and the fact that you are doing some good things; Seeing a Nephrologist, keeping that blood pressure down, losing weight, drinking lots of water and watching what you eat. Keep that up and make exercise a daily routine.

 What you eat is very important for us CKD folks. It wouldn't hurt to consult a renal dietitian.

Welcome to the forum,

Win

KidneyCoach profile image
KidneyCoachNKF Ambassador

Check out kidneyschool.org Fresenius

DaVita

Life Options.org

AAKP

userotc profile image
userotc

The kidney specialist is correct in implying you can manage kidney function by nutrition and lifestyle as my mum (67 y/o) has done 🤞 by increasing her eGFR from 36 to ~60 in recent years. The question is how best to do that in your personal case. A qualified, specialised Nutritional Therapist would adopt a personalised approach.

PS Mum also weaned off her BP tablet via the above, NT protocol. No meds now.

Tolmezzo profile image
Tolmezzo

There's lot you can do. First you need to understand underlying cause of your CKD. And after start a proper treatment based on drugs and lifestyle. You need good nephrologist and renal dietitian. No stress most likely you are still on time to delay or stop or even reverse. But quick action is essential. All the best

Monkey_gir34 profile image
Monkey_gir34

Hey, same as you, suddenly found myself ckd 3a, with little or no support to help me understand how to help myself. I am type2 diabetic with high blood blood pressure. My GPS refused to refer to a nephrogist or renal dietician. So I started swi.ming 3 times a week, as my mobile won't allow most forms of exercise, switched to a wholefood, low dairy /carb diet and my blood pressure came down in line with loosing weight, 3 months in I had lost over a stone, my blood pressure is fairly normal, meds reduced to minimum because it helps kidneys and my diabetes has improved too. Avoid ibuprofen and other nsaids. I found dadvice on YouTube easy to understand and helped me.

S_dillow profile image
S_dillow

i was diagnosed at 3b but ive been there since 2019.dont read up on the internet too much or youll be climbing the walls daily.a good diet and exercise as well as the right bp meds go a long way.

nonna70 profile image
nonna70

I disagree about no renal diet till stage 4. The first time I met my neph at stage 3 he said, "watch salt, (sodium) potassium and phosphorus. He even threw in caffeine. Take heart, many of us have been stage 3 for several years!

Murch profile image
Murch

I attended the class last night recommended above and it was really helpful, the class along with the replies here have been great. I am an over thinker so this has been rough so thank you all for your comments and support. My biggest fear is this is a death sentence but I am starting to see it isn’t.

Now I just need to get out of my head, figure out a diet as my doctor said I need to avoid phosphorus foods. I was already working on limiting my salt but it seems the rest of my diet was the opposite of low phosphorus foods. At this point I’m afraid to eat anything, so figuring out food is key.

Darlenia profile image
Darlenia in reply toMurch

Yes, figuring out the right foods to eat and to eliminate is key. Take a look at your lab report and you'll be able to see which electrolytes (sodium, potassium, phosphorus, etc.) are beyond the normal range and that will give you direction re diet - with the approval of your doctor, of course. Eliminating the wrong things can have serious consequences- think heart arrhythmias, etc. You're losing weight, too, which means your kidneys now have less of a workload to process. You're very wise in taking steps in improving your life. Kudos! You may be pleasantly surprised at your next doctor's visit!

Chance15 profile image
Chance15

hi there Murch

Welcome to the site I’m still learning so can’t offer advice others will.When I mentioned a kidney specialist to my doctor he asked me why,I mentioned about what sort of food do I eat etc,he told me no need to see a kidney specialist.Have you folk on ear got any advice for me it wud be appreciated.

Starrstruck profile image
Starrstruck

I did not find out I had ckd until I was already stage 4.Thete is so much information out there it is scary.I was told to restrict protein to keep my gfr at 22,then I got mineral bone disease and was told to eat more protein because I was starving my muscles so am going to talk to my nephrologist again because I don't know what to do.If I were you I'd do the best I can and try not to worry,it seems like you are on the right track as far as diet goesGood luck I'm praying for you

Drawi profile image
Drawi

Hi Murch, I'm sorry to hear that you're going through so much I do hope it gets better for you when my one older brother had severe covid a little over a year ago he ended up being on dialysis for close to a month. Thank God he's doing better today but still he has to watch what he eats & I gave him some advice I'm not a doctor or nurse but I did have health & nutrition & one thing our bodies don't need much of is potassium sounds stupid but it can make matters worse for some people. Like milk and soy milk have similar potassium so that's between the patient and the doctor but evaporated milk is low in potassium; coconut milk; I believe almond milk is also but just a little higher then coconut milk. Our brother also lost a lot of weight himself he's gaining it back little at a time & still has certain issues but like I say to him one day at a time he's getting stronger & he says he knows he's only in his mid 50's I'm a year & a half younger then him. I'm the youngest in my family except for our second cousins your body does need water they usually say about 6-8 glasses of water everyday but my family also believes in cranberry juice I get the diet one it has less sugar which also isn't good for your kidneys. Too much especially added sugars don't help everything is in moderation but cranberry juice helps the kidneys flush out sugars so sometimes mixing that with a little water & a little stir doesn't hurt but I would suggest just running that by your doctors. Just read the boxes before getting them to see how much sugar it contains per serving even jello I get with no sugar added usually in lime grapes are low in potassium meat you only need a quarter of that's the size of between your 3-4 fingers and a quarter of grains quinoa is higher in potassium so something like rice and a half of plate of vegetables that's how the AHA/ASA always recommends to have on their plate. They should have some information at a library under health & nutrition if you ask someone there maybe you can see take out a book for that just a thought & ask your doctor about it & just write them down. Our bodies normally produce sugar from everything we eat so we always have to be careful how much sugar intake we have but cauliflower is also low in potassium they also have a cauliflower pasta in Shoprite I get only once in a while. I hope this helps you out some but it doesn't hurt to ask your doctor about it & Shoprite also has a nutritionist you can schedule an appointment for free and mention your meds and they can maybe give you also some suggestions. Also there's a DiVita for kidney patients only it's a clinic and they can also maybe help you out in that way also. Because I tried that for our brother a little over a year ago & they can't help me out because they needed to speak to our brother his condition; meds all of that so unfortunately I couldn't get him that information. But maybe they can help you out in that way it never hurts to try I apologize for the long response I hope I gave you some good ideas though.

WildIris profile image
WildIris

Hi, just wanted to add that protein in the urine can mean a prognosis that is not as responsive to lifestyle changes, just based on contributors to this forum. I'm somebody without proteinuria and my eGFR is quite unstable it was 35, then 50 4 months back, 60 this last time though I've had a killer cold that has probably brought it down by now. Good luck!

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