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Does anyone else struggle more with the emotional side of CKD.

Posted by calvinrare @calvinrare, Jul 21 5:55am

I've spent a lot of time reading through the discussions here, and one thing that really stands out is how differently people experience chronic kidney disease.

Something I don't hear talked about as often is the emotional side of it.

The appointments, waiting for blood test results, wondering if your kidney function has changed, adjusting your diet, and trying to explain everything to family and friends can sometimes feel more exhausting than the physical symptoms themselves.

For those who've been living with CKD for a while:

What has been the hardest part emotionally?
Did anything help you stay positive?
Was there a point where things became easier to accept?

I'd really appreciate hearing your experiences. Sometimes knowing that other people have faced the same worries makes the journey feel a little less lonely.

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

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stephanierp | @stephanierp | Aug 4 11:52am

You are going to do great! Mayo is the best! Feel to reach out if there is any way I can be helpful.

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nycmusic | @nycmusic | Aug 4 3:04pm
In reply to @stephanierp "CKD is complex and our emotional reactions are going to be complex. It is okay to..." + (show)
Profile picture for stephanierp @stephanierp

CKD is complex and our emotional reactions are going to be complex. It is okay to allow space and time to feel anger, to feel cheated, to feel depressed. The illness depresses our systems so it is normal to feel lower.

However, it is also important to let those feelings go - like clouds passing by.

When I was dealing with CKD, PKD, kidney failure, and transplant recuperation, I constantly brought my focus up, to how many things my body was doing right to just keep me alive. How hard my kidneys were working, though diseased, they tried so hard to keep me healthy and alive. I was grateful. I made sure to laugh aloud everyday. I Love Lucy worked when all else failed:) I never believed disease was punishment - it was a challenge. Everyone has challenges. I was careful of the messages I sent to my body through my daily thoughts. Was quite stubborn about it. Because what we focus on tends to grow in our lives. The more I focused on my disease, the more symptoms I experienced. The more I focused on the beauty of life - even if I only had the strength that day to really look at a flower, or make my son laugh - the more beauty manifested itself.

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@stephanierp great post….our body systems are interconnected….what we think and focus on affects every system….thanks for saying it so well ! Wishing you the best !

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ricosan | @ricosan | Aug 6 6:19am

I am 82 years old and I was diagnosed with stage 4 kidney disease about a year ago. I’ve had 2 visits with my doctor but I get very little information about what to expect in the months, years to come. I read about the horrors of dialysis. I don’t plan to do dialysis when the time comes. I don’t want to die from CKD either.
At the present time I’m feeling no effects from the disease other than being tired. I still try to walk as much as I can and force myself to drink water. My diet is not CKD friendly but I try to eat lots of chicken and fish along with beef and the occasional pizza.
What should I be asking my doctor at my next visit coming up next month?

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Ginger, Volunteer Mentor | @gingerw | Aug 7 10:53am
In reply to @ricosan "I am 82 years old and I was diagnosed with stage 4 kidney disease about a..." + (show)
Profile picture for ricosan @ricosan

I am 82 years old and I was diagnosed with stage 4 kidney disease about a year ago. I’ve had 2 visits with my doctor but I get very little information about what to expect in the months, years to come. I read about the horrors of dialysis. I don’t plan to do dialysis when the time comes. I don’t want to die from CKD either.
At the present time I’m feeling no effects from the disease other than being tired. I still try to walk as much as I can and force myself to drink water. My diet is not CKD friendly but I try to eat lots of chicken and fish along with beef and the occasional pizza.
What should I be asking my doctor at my next visit coming up next month?

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@ricosan Welcome to Mayo Clinic Connect!

One of the things is to determine what has caused the Stage 4 CKD. Has that been determined? Two leading causes are diabetes and high blood pressure. Also, side effects of certain medications can cause CKD.

Ask for a referral to a renal dietician, who will help guide you along in a sound food plan. We need to watch sodium, sugar, calcium, potassium, phosphorus. Also, if you are using NSAIDS like Aleve or aspirin, stop! Use Tylenol only.

If your doctor is not a nephrologist, please ask for a referral to one.
Ginger

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jesussister | @jesussister | Aug 9 12:01pm
In reply to @ricosan "I am 82 years old and I was diagnosed with stage 4 kidney disease about a..." + (show)
Profile picture for ricosan @ricosan

I am 82 years old and I was diagnosed with stage 4 kidney disease about a year ago. I’ve had 2 visits with my doctor but I get very little information about what to expect in the months, years to come. I read about the horrors of dialysis. I don’t plan to do dialysis when the time comes. I don’t want to die from CKD either.
At the present time I’m feeling no effects from the disease other than being tired. I still try to walk as much as I can and force myself to drink water. My diet is not CKD friendly but I try to eat lots of chicken and fish along with beef and the occasional pizza.
What should I be asking my doctor at my next visit coming up next month?

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@ricosan
Hi We must be our own advocate. Know your numbers, (My Chart). research, ask questions with you doctors. If you don't understand, tell them give it to me in layman terms. Connect with friends and family that support you. Don't give up. Strive to live your best life. Trust God. He created us, not man. Stay encouraged....

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dog momma | @gaileybw | 8 hours ago
In reply to @happyquilter "Emotional side? It's like a horror movie. I feel like I'm being punished for my existence...." + (show)
Profile picture for happyquilter @happyquilter

Emotional side? It's like a horror movie. I feel like I'm being punished for my existence. Am not and have never been one to drink alcohol which I associate with CKD. So not the case. Just existing is the punishment of CKD, heart issues, blood sugar and many more health problems. I am a water drinker, no sodas, no alcohol, no sugary drinks or food. Get diabetes, CKD, heart issues and more. My punishment for still being above ground.

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I was on Li for 20 yrs b/f my psychiatrist said that we needed to get me off of it due to my eGFR and creatinine level. That really caught me off guard. I was unhappy that I was not informed earlier. Now I want to do everything I can to avoid dialysis. I try to grateful for each day that I am granted without wallowing in past, nor projecting too far into the fure. @happyquilter

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dog momma | @gaileybw | 8 hours ago
In reply to @gaileybw "I was on Li for 20 yrs b/f my psychiatrist said that we needed to get..." + (show)
Profile picture for dog momma @gaileybw

I was on Li for 20 yrs b/f my psychiatrist said that we needed to get me off of it due to my eGFR and creatinine level. That really caught me off guard. I was unhappy that I was not informed earlier. Now I want to do everything I can to avoid dialysis. I try to grateful for each day that I am granted without wallowing in past, nor projecting too far into the fure. @happyquilter

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Oops! be grateful, future @gaileybw

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