1. < Kidney & Bladder

Newly diagnosed with CKD (Chronic Kidney Disease) and terrified

Posted by nightwhisper @nightwhisper, Jan 21 3:59am

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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like2dance2 | @like2dance2 | Feb 5 12:38pm
In reply to @windyshores "@like2dance2 have you had a Cystatin C done for the alternative version of the GFR? My..." + (show)
@windyshores

@like2dance2 have you had a Cystatin C done for the alternative version of the GFR? My creatinine-based GFR also dropped precipitously in a few months but I was told the Cystatin C is more accurate and that was much better (stage 3a). Apparently creatinine is affected by othe factors. Just a thought.

Also do you think any meds or even vitamins could be a factor? I had to stop taking some meds for pain (flurbiprofen).

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Thanks I will talk to my doctor about that.

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gladiator14 | @gladiator14 | Feb 6 6:27pm

If you are a Mayo patient ask for a consult with the renal dietician. You need to figure out what your limits are for sodium, protein, phosphorus, potassium, etc. Ther are specific formulas based on your weight, and labs. Everyone can be different. For example where some people are on potassium restriction I have to supplement my potassium. For most it is sodium and protein that needs to be watched. I wish you the best.

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2 replies
windyshores | @windyshores | Feb 6 7:01pm
In reply to @gladiator14 "If you are a Mayo patient ask for a consult with the renal dietician. You need..." + (show)
@gladiator14

If you are a Mayo patient ask for a consult with the renal dietician. You need to figure out what your limits are for sodium, protein, phosphorus, potassium, etc. Ther are specific formulas based on your weight, and labs. Everyone can be different. For example where some people are on potassium restriction I have to supplement my potassium. For most it is sodium and protein that needs to be watched. I wish you the best.

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And my nephrologist is pushing the salt and protein where others are limiting them. I think it depends on what the docs think is behind changes in the GFR.

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1 reply
gladiator14 | @gladiator14 | Feb 6 8:08pm
In reply to @windyshores "And my nephrologist is pushing the salt and protein where others are limiting them. I think..." + (show)
@windyshores

And my nephrologist is pushing the salt and protein where others are limiting them. I think it depends on what the docs think is behind changes in the GFR.

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When you say "pushing the salt and protein" do you mean he wants you to limit them? You make it sound like he wants you to eat them. I can see that if you were on some kind of very limiting diet and you weren't getting enough sodium which can cause hyponatremia and protein is an essential nutrient for the body to function properly. If prior to your diagnosis you were on the Standard American Diet (SAD) I would assure you you were getting excess sodium and protein and with CKD these should be restricted. I would clarify with your nephrologist and ask for an explanation or seek a second opinion.

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1 reply
windyshores | @windyshores | Feb 7 6:25am
In reply to @gladiator14 "When you say "pushing the salt and protein" do you mean he wants you to limit..." + (show)
@gladiator14

When you say "pushing the salt and protein" do you mean he wants you to limit them? You make it sound like he wants you to eat them. I can see that if you were on some kind of very limiting diet and you weren't getting enough sodium which can cause hyponatremia and protein is an essential nutrient for the body to function properly. If prior to your diagnosis you were on the Standard American Diet (SAD) I would assure you you were getting excess sodium and protein and with CKD these should be restricted. I would clarify with your nephrologist and ask for an explanation or seek a second opinion.

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@gladiator14 my nephrologist wants me to ingest more salt and protein. The causes of low GFR's or drops in GFR's based on creatinine can be complicated and can include low blood pressure (hence the salt) and muscle wasting (hence the protein). One size does not fit all. I had an echocardiogram to check heart function, which can also be a factor. I know I need to hydrate more too. The Cystatin C was necessary for me to see what was really going on with kidneys.

I am just saying, that a deeper investigation of drops in GFR can yield varying dietary protocols so don't assume you should limit salt and protein until your doc says so! I never do anything without understanding why.

ps My doc is a female! It is good to use the pronoun "they" when unsure of gender.

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1 reply
dad0229 | @dad0229 | Feb 7 2:23pm
In reply to @mrainne "+1 to positive thinking. Kidneys are an amazing organ. Much depends on long-term testing of creatinine,..." + (show)
@mrainne

+1 to positive thinking. Kidneys are an amazing organ. Much depends on long-term testing of creatinine, and proteinuria, (although I'm going to ask for a Cystatin test). Kidney function can go up and down over time. I would say a good diet (eliminate processed foods, too much salt and potassium) read labels, and watch your blood pressure. Just to mention...many people live long and productive lives in late stages 4 and 5. Even without dialysis. My nephrologist at Mayo Clinic told me this. It depends on the disease and what's causing the decline. And often there are no symptoms. My eGFR is at 27 and creatinine at 1.99. Don't let Google scare you. A positive attitude will help you! You are not alone. :))

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Great Post, Blessing to read it !

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daisyducko | @daisyducko | Feb 7 2:25pm
In reply to @daisyducko "My kidneys tried to kill me 5years back. I made it through and I am still..." + (show)
@daisyducko

My kidneys tried to kill me 5years back. I made it through and I am still going on. Stage 4 and holding. I'm also 74 and optimistic.

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Thank-you 😊 Stay Strong and drink Water☺️☺️

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gladiator14 | @gladiator14 | Feb 7 9:38pm
In reply to @windyshores "@gladiator14 my nephrologist wants me to ingest more salt and protein. The causes of low GFR's..." + (show)
@windyshores

@gladiator14 my nephrologist wants me to ingest more salt and protein. The causes of low GFR's or drops in GFR's based on creatinine can be complicated and can include low blood pressure (hence the salt) and muscle wasting (hence the protein). One size does not fit all. I had an echocardiogram to check heart function, which can also be a factor. I know I need to hydrate more too. The Cystatin C was necessary for me to see what was really going on with kidneys.

I am just saying, that a deeper investigation of drops in GFR can yield varying dietary protocols so don't assume you should limit salt and protein until your doc says so! I never do anything without understanding why.

ps My doc is a female! It is good to use the pronoun "they" when unsure of gender.

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I stand corrected and I should know better not to think horses when there are zebras. I would believe that the muscle wasting would be the bigger concern as a cause of kidney issues as sodium intake in the absence of hypertension is not a typical risk factor. I wish you well.

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1 reply
windyshores | @windyshores | Feb 8 7:18am
In reply to @gladiator14 "I stand corrected and I should know better not to think horses when there are zebras...." + (show)
@gladiator14

I stand corrected and I should know better not to think horses when there are zebras. I would believe that the muscle wasting would be the bigger concern as a cause of kidney issues as sodium intake in the absence of hypertension is not a typical risk factor. I wish you well.

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The idea is that sodium can help raise blood pressure (along with hydration) and thereby help the kidneys with their filtration job.

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1 reply
eva1930 | @eva1930 | Feb 8 7:41am

I have CKD and I was surprised and upset but I decided I as never going on dialysis so I made up my mind it was up to me to change. I bought new shoes so I could walk, I found out what foods I could or not eat and I found a exercise on utube . The result of all this I brought by creatinine up to within the range it should be, That was 2 years ago. I am still doing the same routine with good results. The kidney foundation is the best place to talk to, attend some of their month,y classesthey are their to help you.

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