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 .

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

blbird33 | @blbird33 | Jan 26 11:56am

I recommend seeing a good therapist starting now. This resource can help so much to have someone to talk to about fears, anxiety and any and all feelings you have and help you to express them and feel truly supported. ALso, ask your therapist if she recommends an assessment by a psychiatrist for meds or not. Even mild dose of meds helped me, and I waited too late and had to be hospitalized. I am dealing better with the anxiety and depression, and crying if I need to. Feelings pass once acknowledged. I also attend a mental health support group, volunteer, have fun playing cards and Mexican train with friends and do not isolate as much as prior. You have a life outside of your kidney issue so try to add laughter and coping skills to your day and calming music. I had to both before and after the transplant. Take care and blessings, BB

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eva1930 | @eva1930 | Jan 27 8:02am
In reply to @gingerw "@nightwhisper Welcome to Mayo Clinic Connect. You've come to the right place for support and information...." + (show)
@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

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Contact the Kidney FOUNDATION, THEY HAVE ALL THE INFO YOU NEED TO HELP YOU,

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dougr19 | @dougr19 | Jan 28 8:37pm

What I am about to share is to encourage not discourage. I was diagnosed several years ago with stage 3 CKD. On January 12 (this year) I had my right kidney removed secondary to a growth found. Now my remaining kidney is not working well. I allow myself to feel bad for one maybe two days, then I try to reach out to help some one else. A formidable opponent brings strength. David had Goliath, Luke Skywalker had Darth Vader. Doug’s adversary is kidney problems. Prayer, my family, friends and this web site are all important to keep my spirits up. Seeking professional help to keep you moving forward. Keep your energy up. Keep moving forward. Somehow, someway move yourself forward. People around you need you. Blessings and prayers.
Doug

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1 reply
nightwhisper | @nightwhisper | Jan 30 3:17am
In reply to @lbrockme "I am so sorry you are struggling. I also have CKD stage 4 for a while..." + (show)
@lbrockme

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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Thank you so much for trying to help me 🙏

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nightwhisper | @nightwhisper | Jan 30 3:19am
In reply to @dougr19 "What I am about to share is to encourage not discourage. I was diagnosed several years..." + (show)
@dougr19

What I am about to share is to encourage not discourage. I was diagnosed several years ago with stage 3 CKD. On January 12 (this year) I had my right kidney removed secondary to a growth found. Now my remaining kidney is not working well. I allow myself to feel bad for one maybe two days, then I try to reach out to help some one else. A formidable opponent brings strength. David had Goliath, Luke Skywalker had Darth Vader. Doug’s adversary is kidney problems. Prayer, my family, friends and this web site are all important to keep my spirits up. Seeking professional help to keep you moving forward. Keep your energy up. Keep moving forward. Somehow, someway move yourself forward. People around you need you. Blessings and prayers.
Doug

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Thank you very much and I wish you all the best for your health.🙏

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like2dance2 | @like2dance2 | Jan 31 10:04am

Thanks for your post. Helpful to find someone feeling like yourself. I have gotten the triple whammy all at once. Diagnosed with MGUS, a brain aneurysm, and now chronic kidney disease. I am trying not to panic, but quite frankly, I am. Seems no one is very worried about the MGUS or the brain aneurysm, but the kidneys are my worst nightmare. Stage 3b but dropped like a rock in four months. My BP is very controlled, don't have diabetes yet. The Nephrologist has run tests but not sure what is causing this. Scared in Florida.

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2 replies
nightwhisper | @nightwhisper | Feb 1 12:56am
In reply to @like2dance2 "Thanks for your post. Helpful to find someone feeling like yourself. I have gotten the triple..." + (show)
@like2dance2

Thanks for your post. Helpful to find someone feeling like yourself. I have gotten the triple whammy all at once. Diagnosed with MGUS, a brain aneurysm, and now chronic kidney disease. I am trying not to panic, but quite frankly, I am. Seems no one is very worried about the MGUS or the brain aneurysm, but the kidneys are my worst nightmare. Stage 3b but dropped like a rock in four months. My BP is very controlled, don't have diabetes yet. The Nephrologist has run tests but not sure what is causing this. Scared in Florida.

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I am really sorry you are going through this ,I know it csn be very tough but we ll get through it with strength and patience.Being afraid as I am, doesn't help in anyway,the opposite happens.

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windyshores | @windyshores | Feb 1 4:34am

@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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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Feb 1 12:46pm
In reply to @like2dance2 "Thanks for your post. Helpful to find someone feeling like yourself. I have gotten the triple..." + (show)
@like2dance2

Thanks for your post. Helpful to find someone feeling like yourself. I have gotten the triple whammy all at once. Diagnosed with MGUS, a brain aneurysm, and now chronic kidney disease. I am trying not to panic, but quite frankly, I am. Seems no one is very worried about the MGUS or the brain aneurysm, but the kidneys are my worst nightmare. Stage 3b but dropped like a rock in four months. My BP is very controlled, don't have diabetes yet. The Nephrologist has run tests but not sure what is causing this. Scared in Florida.

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@like2dance2 As @windyshores mentioned, there can be a variety of reasons our eGFR drops. Dehydration, change in medications, stress levels, even different labs processing the blood samples can all play a factor. Even a medication you have been on for a while may have changed it efficacy and giving you side effects.

Push your nephrologist to find out the "why" of decreasing eGFR! I will be interested to hear what you find out.
Ginger

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1 reply
like2dance2 | @like2dance2 | Feb 1 3:31pm
In reply to @gingerw "@like2dance2 As @windyshores mentioned, there can be a variety of reasons our eGFR drops. Dehydration, change..." + (show)
@gingerw

@like2dance2 As @windyshores mentioned, there can be a variety of reasons our eGFR drops. Dehydration, change in medications, stress levels, even different labs processing the blood samples can all play a factor. Even a medication you have been on for a while may have changed it efficacy and giving you side effects.

Push your nephrologist to find out the "why" of decreasing eGFR! I will be interested to hear what you find out.
Ginger

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Thank you

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