1. < Kidney & Bladder

Newly diagnosed with CKD (Chronic Kidney Disease) and terrified

Posted by nightwhisper @nightwhisper, Jan 21, 2024

Hello. I'm looking for some comfort because what I read on the internet about kidney disease is very bad. I had blood in the urine from the glomeruli of the kidneys in 2011 but we monitored it and I was doing very well things were quiet. Now suddenly it started to rise my creatinine and the percentage of my kidneys working is low as my nephrologist told me. I think I'm in stage 3 kidney disease. I'm doing tests all the time and I'm afraid that every time I go for blood tests my creatinine will be more and more up and I can't handle it all.I'm so scared it's progressing fast.I always shudder at illnesses and now something so serious is happening to me,it's a nightmare.I thought I was doing fine,I don't know what this new kidney problem is.Can can someone give me some advice to get courage for my disease? What would you say to someone who has just been diagnosed with kidney disease and is panicking? I am very sad and scared, I feel like my life is over and I am worried about my family how will I leave them .

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windyshores | @windyshores | 4 days ago
In reply to @surveyor07 "Thank u for your reply, part of the thing on diet Mountain Dew is what I..." + (show)
@surveyor07

Thank u for your reply, part of the thing on diet Mountain Dew is what I have read on internet and second I am retired from the department of health in my state, I was one of the state nursing home inspectors, I had several nurses on my team, they were RN’s, and they kept telling me I was going to have problems later down the road from drinking so many diet Mountain Dew. I try not to read too much into the internet on how diet soda’s damage kidneys. In your I opinion, since my last test was 50, and on march 2024, and September 2023 it was at 55, the 50 was in September 2024, am I headed for trouble? Thanks just like to get your thoughts.

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Ask your doctor but that doesn't seem like a drastic drop from my experience. My eGFR fluctuates a lot, mainly due to differences in hydration. Muscle activity or atrophy can also have an effect, and my doctor has told me both blood pressure and heart ejection fraction can affect eGFR. My doc also does the Cystatin C which is more stable and generally higher.

Mountain Dew has caffeine. Is that what worried the nurses?

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1 reply
surveyor07 | @surveyor07 | 3 days ago
In reply to @windyshores "Ask your doctor but that doesn't seem like a drastic drop from my experience. My eGFR..." + (show)
@windyshores

Ask your doctor but that doesn't seem like a drastic drop from my experience. My eGFR fluctuates a lot, mainly due to differences in hydration. Muscle activity or atrophy can also have an effect, and my doctor has told me both blood pressure and heart ejection fraction can affect eGFR. My doc also does the Cystatin C which is more stable and generally higher.

Mountain Dew has caffeine. Is that what worried the nurses?

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Yes, I believe it was the caffeine, I think that their thoughts were that caffeine was hard for the kidneys to filter. Anyway my next appointment is in march so I’m gonna see what doctor says. Again thanks for your thoughts.

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2121 | @leslie2121 | 3 days ago
In reply to @surveyor07 "I was diagnosed with stage3a kidney disease about 4 months ago. I’m 69, male, retired. My..." + (show)
@surveyor07

I was diagnosed with stage3a kidney disease about 4 months ago. I’m 69, male, retired. My last gfr was 50, it had been between 55 & 60. My doctor did not advise me to do anything, but he had said about year ago to drink more water. I have almost quit drinking diet Mountain Dew, I used to drink it one after another , that may have what caused this. My creatinine is 1.4, it had been 1.3 for about a year. I have hbp but it’s under control, only meds I take r two bp meds. I do drink several glasses of wine at night , I may have to stop that. Anyway, it is really bothering me with this diagnosis.

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Diet and fluid intake do matter for our health. Our kidney function can gradually decline as we age but there are things we can do to help. I have eGFR in the 60s and had an episode of mild proteinuria that got my attention in 2021.
I addressed my high blood pressure (meds), cut back on wine to only a couple glasses a month, and drink more water.
I also try to exercise regularly and am trying to lose 20 lbs that crept up.
I am 66 and a retired RN. My nephrologist was very reassuring but I want to do whatever I can.
Eating more plant based food, a healthy weight, exercise, less processed foods will help. So far I am doing great.
Oh, and quit smoking if you do!

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1 reply
surveyor07 | @surveyor07 | 3 days ago
In reply to @leslie2121 "Diet and fluid intake do matter for our health. Our kidney function can gradually decline as..." + (show)
@leslie2121

Diet and fluid intake do matter for our health. Our kidney function can gradually decline as we age but there are things we can do to help. I have eGFR in the 60s and had an episode of mild proteinuria that got my attention in 2021.
I addressed my high blood pressure (meds), cut back on wine to only a couple glasses a month, and drink more water.
I also try to exercise regularly and am trying to lose 20 lbs that crept up.
I am 66 and a retired RN. My nephrologist was very reassuring but I want to do whatever I can.
Eating more plant based food, a healthy weight, exercise, less processed foods will help. So far I am doing great.
Oh, and quit smoking if you do!

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That’s what I’m gonna strive for. Especially drinking more water.

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Lynne Marie | @lbrockme | 3 days ago
In reply to @surveyor07 "I was diagnosed with stage3a kidney disease about 4 months ago. I’m 69, male, retired. My..." + (show)
@surveyor07

I was diagnosed with stage3a kidney disease about 4 months ago. I’m 69, male, retired. My last gfr was 50, it had been between 55 & 60. My doctor did not advise me to do anything, but he had said about year ago to drink more water. I have almost quit drinking diet Mountain Dew, I used to drink it one after another , that may have what caused this. My creatinine is 1.4, it had been 1.3 for about a year. I have hbp but it’s under control, only meds I take r two bp meds. I do drink several glasses of wine at night , I may have to stop that. Anyway, it is really bothering me with this diagnosis.

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I understand how unsettling this can be. Our kidneys do respond to how we eat, sleep and treat our bodies. They are an important part of all the body systems.
Good hydration, with water is important. Not taking nsaids, which are hard on the kidneys, or drinking a lot of caffeine or carbonation also is helpful. I would suggest that you do a little research in reliable locations such as the Mayo clinic , for kidney healthy eating. Ask questions that you have to this group and to your doctors.
Then enjoy your life, do things you love, be outdoors, all things that reduce stress ... which is good for your kidneys too! Your kidneys are functioning fairly well most of the time, rejoice in that! Sending prayers

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2121 | @leslie2121 | 3 days ago
In reply to @surveyor07 "That’s what I’m gonna strive for. Especially drinking more water." + (show)
@surveyor07

That’s what I’m gonna strive for. Especially drinking more water.

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Also, avoid taking NSAIDS like advil, motrin and check to see if it's in other OTC meds. You can go to the National Kidney Foundation website: https://www.kidney.org/ for more information on keeping healthy kidneys. Best to you!

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surveyor07 | @surveyor07 | 3 days ago
In reply to @windyshores "I really wish that the medical system would stop calling eGFR's in the 50's "kidney disease."..." + (show)
@windyshores

I really wish that the medical system would stop calling eGFR's in the 50's "kidney disease." Maybe it is helpful in that we have a chance to hydrate more, avoid NSAIDs and take care of whatever risk factors we have.

Curious why Mountain Dew could cause kidney disease-? I assume you found a reason.

My eGFR fluctuates a lot. It has gone down as low as 36 in a sudden drop. When it is stable, I don't worry too much. Also the Cystatin C blood test results in a better eGFR than the usual one.

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One other thing, on my egfr, I looked at my past test: month and year
8/17-60>
9/18-60>
9/19-60
7/20-51
12/20-58
5/21-53
9/21-75
3/22-47
9/22-55
3/23-60
9/23-55
3/24-55
9-24-50.
Looks like after September 2019 it started to go down

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1 reply
surveyor07 | @surveyor07 | 3 days ago
In reply to @leslie2121 "Also, avoid taking NSAIDS like advil, motrin and check to see if it's in other OTC..." + (show)
@leslie2121

Also, avoid taking NSAIDS like advil, motrin and check to see if it's in other OTC meds. You can go to the National Kidney Foundation website: https://www.kidney.org/ for more information on keeping healthy kidneys. Best to you!

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Thanks, my doctor had advised to stay away from nsaids, which I don’t take, I only take Tylenol not very often.

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windyshores | @windyshores | 3 days ago
In reply to @surveyor07 "One other thing, on my egfr, I looked at my past test: month and year 8/17-60>..." + (show)
@surveyor07

One other thing, on my egfr, I looked at my past test: month and year
8/17-60>
9/18-60>
9/19-60
7/20-51
12/20-58
5/21-53
9/21-75
3/22-47
9/22-55
3/23-60
9/23-55
3/24-55
9-24-50.
Looks like after September 2019 it started to go down

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@surveyor you had a 75 on 9/21 and a 60 on 3/23. Your values fluctuate a lot as do mine. Mine probably fluctuate due to factors other than kidney function, such as hydration, muscle use, low blood pressure. Again the Cystatin C test gives an 3GFR that is more stable- and generally higher.

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surveyor07 | @surveyor07 | 3 days ago

I’m going to ask my doctor for that test on my next visit, I really appreciate this info.

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