Recently diagnosed with CKD Stage 3a. I drink about 2 cans of Diet Dr. Pepper a day, but in reading about CKD, I need to stop. Any suggestions on where to get my caffeine? I don't drink coffee or tea and I really enjoy the fizz, as well as the taste of my Dr. Pepper. Any suggestions?
Soda replacement: Recently diagnosed with CKD... - Kidney Disease
Soda replacement
Written by
TheSQLGuy
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BassetmommerNKF Ambassador
Breaking an addiction, or just a "like: to something can be very difficult. These are suggestions. Start with having only one can a day. Then when you can do that easily, try one can every other day, until you can walk away from it. The other thing to think about it what are you doing when you have the soda. It must be something nice, like watching TV or relaxing. Try associating something similar like ginger ale with the action. This is how they recommend stopping cigarettes. Caffeine in general is not good for CKD. It stresses the kidneys as a diuretic and it raises blood pressure. Try to cut back on the caffeine intake also.
Good luck.
Thank you, in my heart, I know that is what I need to do, in my mind this is a real struggle, but I'll get there.
I drank at least 10 coke zeros a day. It was hard, but I did it. It isn't allowed in the house. Find something to substitute.
Gasified water might work for you but you still want to check the ingredients, some of them use artificial sweetener and it disturb my gut. Perhaps you don't have that issue. I didn't had that specific issue as I was drinking pop casually not every day, I just stopped.
But every once in a while I'll take one of those and enjoy the bubbles. Kombucha also has bubbles, it isn't quite the same but it's healthier. It's fermented tea.
Yeah, probably just need to stop.
Sometimes stopping is not as easy as it should. That's where those can comes handy. I know for myself that I enjoy the little tingly bubble sensation on my tongue when drinking pop. Gazeified water is close enough for me to get that relaxing feeling so to speak. Just not a daily thing for me. I am having more issues with sweets.
You don't seem scared, which is good. I was scared when I was diagnosed and gave up sugar and soft drinks and all processed food right away. As I recall, the first 3 days were hard, but the fourth day I was about over it and my health felt less out of control. Its always the urgency of "Now", isn't it? I couldn't be as methodical as Bassetmommer suggests. 2 years later sweets are just too sweet. I don't know about caffeine. My mother could drink coffee at bed-time and sleep fine, but she didn't put sweetener in it.
Still pretty scared about it all. Family doc just casually tells me I'm Stage 3 Chronic Kidney Disease, there's nothing to worry about, I'll check you again in a year. I was in shock and didn't challenge him on it. Got home and started thinking about it, got online (now that's scary) and did some reading, then I got scared and MAD. Messaged my doc and told him I need to talk to a Nephrologist and with no reply from him at all, I got a referral sent in. Appointments were a couple of months out, so I am waiting to talk to a doc that can really tell me what's going on. I know that there are lots of changes coming, I really haven't started making any, but have begun thinking about it and trying to wrap my head around it all. Really need to talk to a dietitian/nutritionist and figure it all out.
This is not the first issue with family doc, I live in a small town in rural Idaho and my choices are few, he was supposed to be the best in town. Not sure what I'm going to do about that, need new family doc.
This is typical at stage 3. There really is no treatment except major dietary changes that most people can't keep up. So they just treat any symptoms - phosphorus binders for high phosphorus, potassium binders for high potassium, iron for anemia, activated d for pth hormone. They treat causes, high blood pressure and diabetes. Most people aren't even told they have ckd until stage 4.
I would figure that the doc should have talked about diet to try and slow down the progression to stage 4, that is what made me mad. I had asked him about high creatinine levels for the past 2 years and he always said the same thing, you just need to drink more water, there is no issue. It wasn't until I had a heart issue and was put in the hospital and the cardiologist comes in and says how long have you had kidney issues that I was even aware that there could be an issue. Then after the hospitalization I couldn't get in with my doc, he was out of the office for a week, so I saw a different doc in the practice and he was like, we need to look into the kidney stuff. The followed up with regular doc after ultrasounds and more blood work and that is when he mentioned it, then dismissed it all and sent me on my way. I would really like to delay stage 4 for as long as I can, like not go there at all 🙂
Pretty typical experience. I had CKD for at least two years before I noticed the GFR on my chart and looked it up. My primary just assumed it was from diabetes. But it isn't for me. I've had no colon and an ileostomy for 30 years. My CKD is mainly from the dehydration. I finally got put on anti diarrheals which has helped a lot to delay the CKD. I've been stable for 2 years now. Since there is "nothing" to cure or stop the CKD Dr.s are taught to ignore it until you start dialysis or try to get on the transplant list. Other than treating the underlying causes and the symptoms the only thing proven to help slow the progression is diet. A low protein, vegan or vegetarian diet. Most Americans can't do it. It isn't taught in medical school so most Dr. don't even think to recommend it. But even if most people can't maintain it, shouldn't people be at least informed? Cutting down my caffeine and adding mega doses of anti diarrheals has really helped me. I can't do the veggie thing because of my ostomy, but I have reduced my beef consumption and focus on chicken. I'm doing what I can. Three years after diagnosis I have an unused dialysis fistula. I was down to the GFR of 7 but am now in the low 20s and have stayed there with the moderate changes I could manage.
I have an ileo-anal pouch so really cannot tolerate high fibre or many vegetables. No seeds or skins at all plus none of the obvious re appearing foods of mushrooms, corn or peas. Blockages have happened from pineapple/onions/fennel/celery-so they get chopped finely now. Salt is a problem, I have reduced it but cannot do without. I have had no dietary advice either. Lemonade as a thirst quencher is good instead of cola as too much water is a no no for us pouchies.
My doctor's want me under 800 calories a day. How the hell does someone do that when they can't eat veggies! I eat once a day and try to stay around 1000 calories but I lose no weight. My metabolism is so slow I get body chills at mealtime. I have a parastomal hernia which makes blockages worse. I've been sick for 45 years and I'm only 60. I got ulcerative colitis as a teen.
Loads of hernias now, but because of CKD there will be no operations.
• in reply toTheSQLGuy
Yep, TheSQLGuy, I totally get you being mad at the dr.
Had same issue with my usual dr ignoring lab results (as recently as yesterday).
If it wasn't for a younger dr I visited for a different issue earlier this year (who did three lots of testing to establish official diagnosis of ckd & also referred me to an official kidney site online) I would still be kept in ignorance.
Thank goodness for this website!
Right, there's really no treatment now, other than staying hydrated. Losartan, a blood pressure med, seems to help some people and there's a diabetes drug, can't remember the name that seems to help. Medical docs, including nephrologists, just aren't trained to consider diet other than reducing salt, and watching your carbs if you have diabetes. All my nephrologist said is "don't worry, watch your salt, drink an extra glass of water every day." Diet is all we patients can do to slow progression. If you don't have protein in your pee, you are better off, my doc didn't mention that either. A kidney patient, Lee Hull, has a book about diet and kidney disease and manufactures a protein supplement (Albutrix) using magnesium instead of nitrogen as the backbone of the protein molecules, because protein is both essential for health and stressful for CKD patients. He's at kidneyhood.org.
I also have a large cyst on one kidney that is continuing to get larger and a large stone in the other kidney. Family doc said that as long as there is no pain, there is nothing to worry about. I'm thinking that the CKD could be related to one or both of these issues. GFR has dropped significantly in the past 3 months, but nothing to worry about is what I am told. Come back in a year and we will take some more blood and see where you are.
ABSOLUTELY challenge your doctor on this! Do not let him dictate how this is dealt with. I honestly can’t believe that he didn’t refer you to a nephrologist. He isn’t the one who is going to be living with this disease, you are! What I mean by that, is don’t wait a year to see if things have changed, as they most certainly can. My doctor sent me to see a nephrologist when my creatinine level went just above the normal high level. I was 3a (gfr of 61). So imo, your doctor isn’t honestly putting your health care first and foremost. At the very least, I would recommend have a metabolic panel done every three months. I see my nephrologist every six months, but I talked to her about getting blood tests done every three months without seeing her, just to see where my numbers are at. She had no problem with doing that. I love her! There is absolutely nothing wrong checking your numbers that frequently, as it will tell you if you are on the right path, as far as taking care of your kidneys. I would talk to your doctor again, and if he poo-poos you wanting to be as proactive as possible, FIRE HIM! I fired my first nephrologist, as he was basically useless when it came to being proactive. He gave me absolutely NO information on how to be proactive with this disease. All he would do is read my numbers and tell me where I was with my kidney function. I can do that myself with reading my blood tests, and I have educated myself on all the tests and what they mean. Nothing irritates me more than a doctor that is nonchalant like this. I have said it many times, and I will say it again- YOU must be your best own health advocate. No one else has to live with your decisions (health wise), and you need to be as proactive as you can be. We have one shot to do this right. Make it your best shot! Educate yourself as much as possible. There is DadviceTV, which is a great resource for CKD, and his story is amazing! Check him out. He has a YouTube channel and website. Best of luck to you, and welcome to the group.
Very good!!...Couldn't have said it better...Be your own Doctor and make yourself your own Patient
Thank you. I have had experiences with doctors that have been less than ideal, and HAD to be my own health advocate. I went to see an orthopedic surgeon for a right rotator cuff tear, and he wanted to open me up the next week and repair the tear. When he said “We’ll schedule you on the 16th for your left shoulder” I instantly crossed him off my list as an OS. Not only did he say the wrong shoulder, but he was arrogant and very pushy. I got a second opinion from my OS who did my ruptured Achilles’ tendon surgery, and he told me that he didn’t want to open me up if he didn’t have to, and recommended doing his physical therapy exercises, and if it didn’t improve, he would then do the surgery. That was probably 10 years ago, and my shoulder is great, WITHOUT surgery. In my 57 years on this earth, one thing that I have learned is that doctors are not infallible, and need to be questioned when something doesn’t feel right.
Some clear drinks with caffeine;Tab Clear
Zero Pepsi
And one other called something
Like ------sunshine(??,) Ice. Sorry I can't remember the name of that Ice drink.
Anyhow. You may have trouble finding them.
BYW aren't CKD people not supposed to be drinking dark colored drinks??? is it because these have phosphorus in them?
Hope this helps.
Probably going to give up on soda, may take a look at Whole Foods or some other like place to see what they have, but probably best to just give it up.
I used to drink Diet Pepsi but when I realized I couldn't anymore, I switched to Bubly carbonated water (Mango is my favorite flavor). I actually like it much better.
All cola drinks are off limits. Diet or otherwise. Not because of caffeine.
Yep....its the dye they add for the color
My renal dietician said I could drink one root beer a day. Root beer doesn’t have caffeine but still gives you a sense of a treat. Some root beers have higher phosphorus than others, so check the labels. Brands that are ok are Mug Root Beer, Barq’s and A&W Root Beer.
Discovering that its all about the benefit/cost analysis. If you cut everything that you are supposed to, your kidneys will last longer, but you may not enjoy life. If you don't cut everything, you may enjoy life, but hurt your kidneys faster. I'll get there, we're all getting there to some degree. We each have to find our spot in this mess and decide what is ok and what is not.
It took me awhile to find my sweet spot in the mess, but you can do it. I did not do well on a strictly plant food diet and I'm now on a modified fruit and veggie diet with some small amounts of fish and chicken. Everything now is in moderation. Portions are much smaller, but I'm much happier. Best of luck as you navigate yours.
I used to drink a lot of Coke but pretty much went cold turkey on it. I do like coffee but only 1/2 cup in the am. I drink ginger ale when I need to "fizz" you talk of. Before going whole hog (lol) on diet, take a look at ALL of you values. I tried plant based but can't get enough calories and am struggling to put on some weight. I tried low protein, now my serum ALB is too low and that's not a good thing. Cut way back on sodium and now that's too low so it's all a balancing act based on YOUR individual lab results.
Oh and do you work in SQL databases by any chance? I do data analysis for work and love it. I use a program where I have written scripts to do various things pulling data from our SQL databases.
When you wrote about your 1/2 cup of coffee, I laughed. Now that I've cut out dark sodas and cut way back on caffein, there are a lot of days I will make a cup of coffee only to get busy and find 3/4 of it still sitting in the cup, cold, after a couple or three hours of hyperfocusing on work 
So I must not be missing it too bad
Since that's the first thing I drink when I get to work, before starting anything, I do not get hyperfocused and miss out, at least not on the coffee. Food sometimes, especially when I had no appetite. My neph had to give me a prescription to increase my appetite cause I was losing way too much weight.
I drink San Pellegrino sparking water. Never sodas. And only organic decaf coffee processed via water filtering. I by from The Organic Coffee Company on Amazon. Works great for me
BTW San Pellegrino has a good balance of minerals including magnesium. Whole Foods also sells Mountain Valley sparkling water that has no sodium but other minerals.
I like Pellegrino too, although I found that the KIrkland Italian Sparkling Mineral Water (Costco) seems to have slightly less carbonation which I like.
Been a little shy about Kirkland since they artificially add the carbonation, but it is good.
Believe it or not, even Pellegrino adds the carbonation.
good to know but I also avoid plastic that might have to warm
Sprite is also an option for a clear, no caffeine fizzy drink. Though I really prefer Barq's root beer to replace the gallons of Dr. Pepper I used to drink And then there's just plain ole boring cheap water with crushed ice that works, to which you can add some "Tru Lemon" powder to spruce it up a tad.
I used to have a Diet Coke in my hand always! I loved the stuff, the fizz I was addicted to it.
When I was diagnosed I went cold turkey. I really miss it, but now I drink only water, a morning coffee and when I want the fizz I get carbonated water with a touch of flavour. Where I live my grocery store has President's Choice products, they carry a line that is just carbonated water with a touch of lemon, lime or tangerine. It's a nice treat. Also, Coke has a line of its own sparking waters with no additives which are pretty good but kind of expensive. AHA water this one is particularly good.
drinkaha.com/products/lime-...
I do miss my brown soda, but I know I can't go back and a life without caffeine helps with my anxiety!
It depends on your ckd. I have ckd from long time dehydration. I also have slightly high phosphorus and diabetes. I lived on coke zero until I got ckd. Dark pops, except root beer, are high in phosphorus. I drink sugar free, caffeine free when I can. Most restaurants don't carry diet sprite or 7up. At home I drink a Walmart pop that is a liter, sugar and caffeine free, various fruit flavors. I use phosphorus binders when forced to drink diet coke. I hate plain water.
Try the brand Zevia it was recommended to me I drink the ginger ale no sugar sweetened with stevia and no caffeine they make a cola too and several other flavors
I once loved Diet Dr. Pepper with lots of ice. That is, until a guy I worked with pointed out to me that he didn’t like the taste of it because it reminded him of cough syrup! So I stopped the Dr. Pepper and turned mostly to Diet Pepsi, until I did some online research on Acesulfame Potassium. It wasn’t easy to come away from drinking my favourite colas and sodas, but at that point, I didn’t have much of a choice. The most I can suggest is to try drinking bottled water with a spritz of lemon juice. It won’t be exactly the same, but it’ll be better than just water. I hope you’ll find this helpful. 💕🙏
Your Nephrologist will be able to refer you to a dietician that will help you to start eating a kidney friendly diet. Good luck on your journey !!!
Are root beer drinks OK to drink? Several people mentioned it. I do get tired of plain water and would like some substitutes.
I love the Bai Coconut water...ice cold...its not carbonated, but carbonated can be bad as salt is used to make those bubbles..I showed my Nephologist and Dietician the label and they both agreed this was fine for me to drink...I have been drinking it for years...Stage 5...on Dialysis and still without any fluid restrictions...Life is good..
You need to watch your labs with any changes you make....it is your best guide..what is okay for one person may not be okay for another ...our Kidneys are as different and unique as our fingerprints
Well, I did it. I've gone a week without soda, didn't think it was possible. Drank a lot of water this past week. Do I miss it, yeah, will I continue to miss it, probably, do I prefer to save my kidneys from getting any worse, YES!
By the way, my 2 sodas a day that I was drinking was a big cut down from the 128 ounces a day that I had been drinking for many years. I've kept it to 2 sodas now for several years, so I guess that was the stepping stone to just plain stopping. Was at Trader Joe's this morning and almost bought a couple of their sparkling waters to try, but decided not to do that yet.
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