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

Most definitely. Many times over. Especially since I'd had it for at least 3 years, stage 3B, before my doctor advised me. I researched my blood work and found that out.

I get emotional about my kidney disease. I get very angry sometimes. My doctor waited through 3 years of blood work to tell me I had CKD3B. I researched it myself and found that out. I was and am very upset that he waited that long to tell me. I do get very ticked off about this disease and have a tough time dealing with it sometimes. The diet restrictions, blood work, blood pressure, etc.. I'm now on a remote blood pressure machine for my nephorologist so he can have my daily morning readings. Plus now my appetite is gone. I'm positive that I will catch flack over not eating but it's really tough when you have zero appetite and gobs of dietary restrictions.

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.

Reading everyone's experiences has reminded me that while medical treatment is essential, having the right support system can make a huge difference emotionally as well. Not everyone has access to the same level of care or financial resources, so community organizations can sometimes fill an important gap alongside healthcare providers.

For anyone in Pakistan who may be looking for patient support, I recently learned about **Hopewell Foundation**. They provide free dialysis and assistance for people who are unable to afford treatment. It's encouraging to see organizations working alongside medical professionals to help patients and their families.
https://hopewell.org.pk/

CKD is one disease that people, even good docs, are not responding to very well…it is sneaky and for a long time people feel fine…docs don’t have meds except for later stages….dietary advice is often conflicting,and very hard to explain to even close family and friends….many who have CKD also have other health issues, and trying to balance the needs of them can be daunting…..but, it can be stabilized early on by careful attention to blood tests (especially checking GFR and creatinine), hydrating, diet (especially watching salt, proteins, potassium)… exercise also helps…be proactive and creative taking care of oneself.

Dealing with our health issues is what I call the “Ferris Wheel” syndrome. Sometimes we are up and sometimes we are down. We are all not immune from health problems from nose to toes. When I am up I am thankful for what I have and do my best. When I am down I realize that there is always something that could be worse and I begin my journey back up and return to a more positive place of thankfulness.
Blessings.

When we have high cholesterol, we don’t label it as chronic heart disease,BUT most people adapt their diet and lifestyle….even though docs may not wish to label us as having CKD, we still can help our health by adapting our diet and lifestyle….we should be just as vigilant as we are about kidney issues as we are about avoiding heart trouble and/or diabetes…… i have heard that the ‘’normal’’ numbers commonly used for kidneys really do need updating—our kidneys age just as other organs do, and comparing an 80 year old to a 50 year old is not to the point….i’m all for kidney awareness, just don’t call me ‘’diseased ‘’ at this point…while advising me to pay attention. Seriously depriving people of protein too early on does seem a bit too much…..in the end it’s about early monitoring and adjusting to where we are, all about balance .

@michael219 Hello Michael, I also have PKD and had a kidney transplant 6 years ago. It was definitely a scary journey but I am doing well now. You are going to do great!

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.

@stephanierp - Congratulations, and I'm glad you are doing well...! !! Thank you for your reply and comment! I am going into my planned surgery (tomorrow) with optimism and open eyes, well, at least until the anesthesia kicks in! 😉