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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diane | @dks | Apr 6 10:56am
In reply to @dougr19 "Fifteen year habit of taking water. That is inspirational. I just had kidney removed January 12,..." + (show)
@dougr19

Fifteen year habit of taking water. That is inspirational. I just had kidney removed January 12, I also have stage 3 chronic kidney disease with current GFR Of 38. I just learned a new term or strategy that has helped me with drinking water. It is simply called “structured water” which is planning or scheduling water. I set my alarm on my phone and it goes off every hour. Drives you nuts at first, but now I can turn my alarm off before it even goes on. Changing our patterns can be very daunting. Whether it is diet, exercise, drinking water or even our present state of being as we live with our various diagnoses, we must change our patterns. Blessings.

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Thank you for your water alarm advice. How much water do you drink when your alarm goes off? How many ounces of water per day (total) do you consume? Thanks so much & continued success!

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1 reply
maggieo | @maggieo | Apr 7 6:02am

I have had stage 4 kidney disease since 2009 (caused ischemic bowel, also lost my large intestine at same time.) I have managed to stay off dialysis and stay very functional with very careful diet control (mainly less salt, changing from Meat based protein to at least 50% plant based protein, getting off of several prescription medications that I didn't need, avoiding all food products with added phosphate in any form, monitoring blood pressure carefully, and having a great nephrologist. Energy level is not what it was, (luckily I am retired) but I have managed to stay off dialysis, travel, findjoy, and have a good life. Takes lots of work, but can be done.

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1 reply
mrainne | @mrainne | Apr 7 2:58pm
In reply to @maggieo "I have had stage 4 kidney disease since 2009 (caused ischemic bowel, also lost my large..." + (show)
@maggieo

I have had stage 4 kidney disease since 2009 (caused ischemic bowel, also lost my large intestine at same time.) I have managed to stay off dialysis and stay very functional with very careful diet control (mainly less salt, changing from Meat based protein to at least 50% plant based protein, getting off of several prescription medications that I didn't need, avoiding all food products with added phosphate in any form, monitoring blood pressure carefully, and having a great nephrologist. Energy level is not what it was, (luckily I am retired) but I have managed to stay off dialysis, travel, findjoy, and have a good life. Takes lots of work, but can be done.

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I'm also 4th stage, GFR 27. I asked for a cystatin test to compare to the creatinine test this month. I'll see how they compare at the end of April. I think of the loss of kidney function as being aware of how much work I expect them to do. The more they have to clean, the harder it is. I intermittently fast almost daily. So I eat in an 8-hour window and let my digestive system rest for 16 hours. I'm not sure if fasting helps but I feel better, and have more energy. I've heard stories of people with 4th stage kidney disease living many years without dialysis. I'm monitored every 3 months and like my new nephrologist.

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dougr19 | @dougr19 | Apr 7 3:14pm
In reply to @dks "Thank you for your water alarm advice. How much water do you drink when your alarm..." + (show)
@dks

Thank you for your water alarm advice. How much water do you drink when your alarm goes off? How many ounces of water per day (total) do you consume? Thanks so much & continued success!

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I try to drink 4-6 ounces every hour. If I am up at least 14 hours per day, therefore about 80+ oz. Per day is my goal. Some kidney patients are on fluid restrictions so they will have to be careful. Fluid intake goes from a chore to a habit. A should becomes a must. Blessings.

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2 replies
diane | @dks | Apr 7 4:25pm
In reply to @dougr19 "I try to drink 4-6 ounces every hour. If I am up at least 14 hours..." + (show)
@dougr19

I try to drink 4-6 ounces every hour. If I am up at least 14 hours per day, therefore about 80+ oz. Per day is my goal. Some kidney patients are on fluid restrictions so they will have to be careful. Fluid intake goes from a chore to a habit. A should becomes a must. Blessings.

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Thanks so much for your reply! I've been drinking 8-9 cups per day & have seen my GFR do from 62 to 68 in my last labs, so I'm a believer in trying to keep my water intake up. Thanks again for posting the phone alarm reminder. I'm on my send day & it's really helping me stay on-track!

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maggieo | @maggieo | Apr 8 5:58am
In reply to @dougr19 "I try to drink 4-6 ounces every hour. If I am up at least 14 hours..." + (show)
@dougr19

I try to drink 4-6 ounces every hour. If I am up at least 14 hours per day, therefore about 80+ oz. Per day is my goal. Some kidney patients are on fluid restrictions so they will have to be careful. Fluid intake goes from a chore to a habit. A should becomes a must. Blessings.

Jump to this post

I drink 100-125 oz of water a day. And I continue to drink throughout the night because if I don't, I get leg cramps in the early morning. It's a drag because I have to know where every bathroom is everywhere I go. But way better than dialysis!

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1 reply
annbelle | @annbelle | Apr 9 10:49am
In reply to @maggieo "I drink 100-125 oz of water a day. And I continue to drink throughout the night..." + (show)
@maggieo

I drink 100-125 oz of water a day. And I continue to drink throughout the night because if I don't, I get leg cramps in the early morning. It's a drag because I have to know where every bathroom is everywhere I go. But way better than dialysis!

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every day i replay my drs words about drinking water, keep those kidneys working he said,,i am in kidney failure, stage 4, and trying to maintain, not diabetic, i must not fall down, the last fall sent me from stage 3 to stage 4, do what u have to do

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