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 .

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

I have had stage 3 kidney disease for years and never gave it a thought until suddenly my eGFR went from 55 to 37. What are your GFR numbers?

For me, the other kind of GFR, not based on creatinine and more reliable, is the Cystatin C, which for me remains in the low 50's.

Hydration plays a big role in GFR. Do you hydrate well before kidney blood tests?

If you have low blood pressure that can affect the GFR, as can heart function. My doc did an echocardiogram. Muscle loss can affect creatinine which is why the Cystatin C is better.

I personally would not panic over stage 3 kidney disease. Talk to your nephrologist, if you have one, about diet, hydration and other measures to keep your kidneys as healthy as possible. Avoid certain medications like NSAID's and some supplements that are processed in the kidneys.

To be honest, I didn't give stage 3 much thought until my eGFR hit the 30's, and even then, the Cystatin C was reassuring.

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WS diadiosed with CKD and I bought new shoes, stasrted walking, found out what food to avoid and I brought my creatinine to a good number.

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@nightwhisper Welcome to Mayo Clinic Connect. You've come to the right place for support and information. Getting an unexpected diagnosis can be very upsetting.

First off, everyone is different. What works for one may not be ideal for someone else. Start off with having the information about your condition at hand. What is the doctor telling you. What is the eGFR [kidney function]? What is the base cause of the kidney disease? Diabetes and uncontrolled high blood pressure are the two main causes of kidney disease. There can also be factors like medication side effects, acute kidney injury from infection or physical injury, genetic factors.

Diet, moderate exercise, reduced stress, medication [if needed] compliance, and education will all go a long way to help you. The National Kidney Fund has a lot of great information: https://www.kidney.org/ to answer questions. Also, rsnhope.org is a organization with support groups and information. And don't forget Mayo Clinic take on it all: https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/symptoms-causes/syc-20354521

Please don't Dr. Google and go down that rabbit hole of misinformation from questionable sources! It will get you more upset. Please let me know if there is anything I can help you with?
Ginger

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@windyshores

I have had stage 3 kidney disease for years and never gave it a thought until suddenly my eGFR went from 55 to 37. What are your GFR numbers?

For me, the other kind of GFR, not based on creatinine and more reliable, is the Cystatin C, which for me remains in the low 50's.

Hydration plays a big role in GFR. Do you hydrate well before kidney blood tests?

If you have low blood pressure that can affect the GFR, as can heart function. My doc did an echocardiogram. Muscle loss can affect creatinine which is why the Cystatin C is better.

I personally would not panic over stage 3 kidney disease. Talk to your nephrologist, if you have one, about diet, hydration and other measures to keep your kidneys as healthy as possible. Avoid certain medications like NSAID's and some supplements that are processed in the kidneys.

To be honest, I didn't give stage 3 much thought until my eGFR hit the 30's, and even then, the Cystatin C was reassuring.

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Thank you so much for your answer.I will ask my doctor about Cystatin C test.I know I have to loose weight,about 15kg ,maybe more but I don t know the cause of my disease and that terrifies me.I imagine the worse,that could be due to something even worse.I'm depressed, I force myself to eat, I force myself to get through the day. I'm always sad and panicky, my heart is beating fast all the time and I don't know how to manage it and how to comfort myself. I'll do everything you suggest in your message and yes I hydrate well before my blood tests, that is not the reason my creatinine is going up. I am very scared.

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@eva1930

WS diadiosed with CKD and I bought new shoes, stasrted walking, found out what food to avoid and I brought my creatinine to a good number.

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Really?Did exercise help you with creatinine levels?But what is the cause of your CDK?Maybe mine is more.difficukt to treat

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@gingerw

@nightwhisper Welcome to Mayo Clinic Connect. You've come to the right place for support and information. Getting an unexpected diagnosis can be very upsetting.

First off, everyone is different. What works for one may not be ideal for someone else. Start off with having the information about your condition at hand. What is the doctor telling you. What is the eGFR [kidney function]? What is the base cause of the kidney disease? Diabetes and uncontrolled high blood pressure are the two main causes of kidney disease. There can also be factors like medication side effects, acute kidney injury from infection or physical injury, genetic factors.

Diet, moderate exercise, reduced stress, medication [if needed] compliance, and education will all go a long way to help you. The National Kidney Fund has a lot of great information: https://www.kidney.org/ to answer questions. Also, rsnhope.org is a organization with support groups and information. And don't forget Mayo Clinic take on it all: https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/symptoms-causes/syc-20354521

Please don't Dr. Google and go down that rabbit hole of misinformation from questionable sources! It will get you more upset. Please let me know if there is anything I can help you with?
Ginger

Jump to this post

You are very kind,thank you so much.I don t know yet the cause of my disease but it s not diabetes or hypertension.I'm depressed, I force myself to eat, I force myself to get through the day. I'm always sad and panicked, my heart is constantly beating fast and I don't know how to manage it and how to comfort myself.
now I'm in the stages of getting tests to see what's going on and my anxiety is out of control because I'm afraid some other even scarier disease is causing my kidney disease and I can't find peace.

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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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I am so sorry you are struggling. I also have CKD stage 4 for a while after my surgeries for cancer but now improved to stage 3.
I know it can be frightening to face a chronic illness. That us a normal reaction for most people. I have been stage 3 for about four years and my kidney function fluctuates a little but is holding it own pretty much.
I would encourage you to focus on the specific questions for your nephrologist ...
- are there underlying health issues that created this that I need to address
- what specific things do I need to do to help my kidneys remain stable
Write down all your questions so that you have them for the Dr.
My main goals are five fold
1 - focus on just to live my life well, to be present in every moment and enjoy the things important to me . Remove negative stressor that I can remove as stress is hard on the body . I refuse to focus every moment on illness. I purposely turn my thoughts to something else... I use my faith a lot here to keep my my mind focused positively. Getting out in nature, grounding myself with things important to me
2- eat healthy food , regularly
3- get rest. Sleep is important in healing our body
4- be well hydrated- limit caffeine and alcohol. No sodas . All hard on kidneys
5- build my faith foundation

It might be helpful for you to find someone that you can talk to about all of your fears and emotions. It could be a close friend, someone in your faith community, a Chaplain at the hospital, or even a therapist for a period of time. There are also support groups through various kidney foundations and networks or your local medical center.
Just sharing your fears may help you process and cope with them better. I am wishing you the best and hoping you are doing better !

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+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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I’m so sorry you are feeling this way. I felt the same panic when diagnosed last year at stage My Dr wasn’t concerned at all… told me “ well it’s not like it’s stage 3 cancer!” Stage 3 as it turns out is the first stage they will even mention it to you. That’s the first stage that shows up as “ out of range” on blood tests. The tests can be greatly influenced by many things such as hydration so follow testing trends over time not individual tests for the best picture of what’s happening. What finally calmed my fears was doing hours of research about CKD, online. While it’s true kidneys don’t repair themselves, you can greatly slow the progress of CKD with proper diet and lifestyle and addressing any possible underlying contributing conditions such as high blood pressure etc. The American Kidney Foundation is a great source of information. Certified nutrtionists are a great resource as well. I haven’t found a general MD who has any in depth knowledge of the disease and nephrologists won’t see me at stage 3 as it’s considered mild and they are swamped with folks at later stages. CKD is reaching epidemic proportions in our society. I believe not mentioning it until stage 3 is one reason! Arm yourself with information and reach out as you’ve done. Try to breathe…. Peace

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