Ckd 2 27 but very active : Question for you... - Kidney Disease

Kidney Disease

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Ckd 2 27 but very active

Live4Hope profile image
18 Replies

Question for you all. So, overall my nephrologist says my kidneys are normal structurally and the protein in my urine at its highest was 61, went to 18, and then was undetectable. I'd assume it is due to my life style changes and probably losing over 92 pounds.

Anyway, Nephrologist said I can splurge on food 1 time a week (which I do a little, I've gotten used to being restrictive) and that it's more important about abiding by a healthy life style most of the time (80% or more) rather than only being completely restrictive. He said balance is more important.

My question is if I have one day of high sodium will it stress my vessels and kidneys enough to do any more damage?

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Live4Hope profile image
Live4Hope
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18 Replies
Bassetmommer profile image
BassetmommerNKF Ambassador

Yes and no. It may cause you to bloat a bit, and that is uncomfortable. And yes, you will be stressing the kidneys to remove the salt. Add more water to the mix and you should be ok. The concept of one day a week has proven to be a slippery slope. You are only 27 and losing 92 pounds is amazing..... GOOD FOR YOU! so you probably are so disciplined that you will be ok with one day off.

Live4Hope profile image
Live4Hope in reply to Bassetmommer

Thanks for your input! I usually drink about 95-100 ounces a day. On high sodium days I try to make sure I don't double the recommend amount for non-ckd patients.

By slippery slope do you mean where people start to hop off the wagon or slippery slope as in there is still consistent damage that could promote progression? I pretty sure I got your intent but wanted to clarify just in case.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Live4Hope

they start with one free day, then a day and half...the weekend and pretty so, all the hard work is gone and you have learned a new behavior. Diet is 90% behavior, 10 % hunger.

Live4Hope profile image
Live4Hope in reply to Bassetmommer

I see what you're saying!

nonna70 profile image
nonna70

You've done a good job with the weight, etc. Remember that you have many years to live. Maybe you will not want to take a whole day off. Perhaps there is a special occasion planned with friends. Enjoy that meal and then back to your diet.

Live4Hope profile image
Live4Hope in reply to nonna70

Yes, I don't typically take the whole day, I mostly just eat one or two things I want every Friday before I go to the gym. I appreciate your comment about many years to live, having trouble believing that sometimes no matter what my care team says. They often tell me I'm in a good spot and showing improvements while saying I have a good chance not to progress further, I'm trying to accept that me keeping myself stable is possible.

Dana66CKD profile image
Dana66CKD

For myself, I've noticed increased swelling in fingers, upper/lower extremities, some foggy mentation but rare has my sodium ever been in normal range. Usually below low end of normal, so I occasionally use <a pinch salt in food and I use app to roughly keep estimate of Na+. If mild edema equals kidney stress, then I'd say yes. My problem is different though because I also have chronic inflammation from autoimmune disorder. Sodium is filtered through the kidneys so I am VERY conscientious about my intake.

Hope you can find what works best for you🙏

Live4Hope profile image
Live4Hope in reply to Dana66CKD

Thanks so much for sharing. My sodium levels are normal, honestly in the middle range even before I started limiting sodium so it seems my body gets rid of most my sodium but even so I don't want to take too many chances.

How long have you been living with your condition if you don't mind me asking?

Dana66CKD profile image
Dana66CKD in reply to Live4Hope

I had AKI 2012 from Meningococcal Septicemia. That lead to 3 months dialysis, then kidneys regained function up to 95-99%? That lasted till Jan. 2022. Was initially diagnosed stage 3a, but function has been up to 95 & as low as 55 & everywhere in between for past two years. Unfortunately, with "super infection" illness, it left me vulnerable for autoimmune disorder since 2013. I have chronic inflammation & this makes the ckd worse at times, but I also have very good days. It's been an adjustment in lifestyle, but I've also lost 45lbs since end of 2022 & have maintained current weight. Keep up the efforts you've made to stay healthy.

barbara55109 profile image
barbara55109

We are all different. I don't restrict salt because my CKD is from dehydration from 30+ years of living colon free with a high output ileostomy. I need salt and potassium. I know I'm rare, but I'm not alone. Lots of "one size" CKD advice shouldn't be universal advice. Best to check with Dr about your specific diagnosis. I too lost weight, 50 and still trying for me. I don't forbid specific foods, but set limits on myself. I love orange twizzlers. I made a deal with myself when they came out, they are seasonal. One package and no more than one a day. The bag lasted for weeks instead of hours. They still have them at some stores, but I made myself a deal and I refuse to break it. I've been able to walk by.

Live4Hope profile image
Live4Hope in reply to barbara55109

I appreciate your comment. I'm kind of similar in that regard. I try to fit in my sweets but only if I exercise but even then I try to stay under the recommend amount of added sugar (I don't have diabetes just trying to keep myself from that). I like how you said a deal with yourself. I want to embrace that more for me.

barbara55109 profile image
barbara55109 in reply to Live4Hope

Forbidden food tactics usually backfire. Better to moderate.

Live4Hope profile image
Live4Hope in reply to barbara55109

So true. Before I discovered I had any kidney trouble I lost the bulk of my weight from scheduling times to enjoy my food choices. A bit harder now since it went from "doing this cause I want to" to now it feels like "I have to" and if I don't things get worse. Very mentally taxing. What's helped you through this if you don't mind me asking? I really struggle with feeling like I'll live long and I know many people do with this condition but just having a hard time with it the last two days. Using my coping mechanisms a lot but not everyone understands that fear like someone who is experiencing something similar.

barbara55109 profile image
barbara55109 in reply to Live4Hope

I'm 61 and been fighting for my life since I first got ulcerative colitis at 25. I lost my colon at 30. I have holes in my bones from IV steroids and now CKD from dehydration. I've been fat my whole life. Right now I'm at my adult low of 166. I was 224 when I learned of the CKD. Mayo clinic and the university of Minnesota would not even do a kidney transplant evaluation. Fat people are discriminated against, without a basis in science. Since my BMI was "obese" I was in the same group as 6,000 pound people. Hennepin county medical center did an intake, and they gave me a year to lose weight and exercise regularly to "prove" I wouldn't waste a kidney. I passed every test they threw at me, but the scale rules. Most days I eat once, usually a turkey sandwich. I can't eat veggies because of my ostomy. A blockage would kill me before CKD. My Endo told me I wouldn't lose until I got below 800 calories s day. I go to the YMCA five nights a week and ride a recumbent machine for 1-3 hours. I work full time, so I can't fit much more in. My Endo says exercise is good for heart, but doesn't help with weight loss at all. I didn't lose until I was able to stop insulin. I barely took any, but it makes you gain. My T2 was always in control with metformin but they made me switch to insulin when I got ckd. I was able to do this with mounjaro. It has been a very difficult 4 years. But I've gotten my eGFR up from 7 to 31 by losing weight, drinking nonstop, and going on max doses of antidiarrheals. I try to focus on today. I also started doing some things for myself. Our kid is 24 now and gone to partners on the weekend. So I joined the crochet guild and started teaching crochet. I rarely did any solo activities, but nowo most Saturdays I have a fiber event. Do fun things for yourself and just deal with today first.worting about what if doesn't help. A year of therapy helped me with that.good luck.

Live4Hope profile image
Live4Hope in reply to barbara55109

Thanks a lot for your story, that is a tough battle you've been fighting and you're still living to fight for what you rightfully deserve. I'm really glad you kept fighting because talking to you has reminded me that there is always something a person can do.

Blackknight1989 profile image
Blackknight1989 in reply to barbara55109

Ain’t it da truth…

Imviiku profile image
Imviiku

Hey man. We have an extremely similar story. I'm 27 as well and have lost 110 lbs in the last 7 months. I still don't know whether i have CKD or not because my GFR is absolutely fine. Its above 120 but i had gotten Protein in my urine twice in the dipstick test. Once i was dehydrated so that annulled, second time it was Trace protein. After that i have never gotten Protein in my urine. I still haven't done 24hrs urine test but i have done Albumin/Creatinine Ratio 5-6 times and it has always been in range i.e. below 30. The highest i have got was 22mg/g and after that it has always been below 5mg/g. Everyone has said i don't have anything but my biggest problem is that i still get foamy urine. Right now i am on a decent protein diet as well, 1g/pound+ . Should i stop taking this diet ? I will eventually get 24 hrs protein test done in September even though they say ACR is enough.

Live4Hope profile image
Live4Hope in reply to Imviiku

Hey there. Sorry you're going through all this! 1. Have you gotten an ultrasound of your kidneys? If you don't have visible changes to your kidneys that can help rule out some things.

2. Do you have a history of high blood pressure?

3. Sometimes the proteins in urine can give a false positive if you workout often and sometimes working out intensity can impact the content of your urine so foamy urine can happen.

4. The UACR is typically more accurate but a 24 hour couldn't hurt. The issue with the 24 hour it can be inaccurate due to human error.

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