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

I lived with CKD from 2014 till 2024 when I had gone far enough to need dialysis. It seems to me that I like many others were not ready to except what was happening to them at first. It took me at least 6 weeks to come to except the fact that this was a better way to control my CKD. I have meet many others that come on this journey. There is a learning curve for every step, once you understand that it becomes easier.

Yes, the only one that I have shared my ckd is my wife. The other family members know of my heart conditions since 2010. I didnt want to go into explanations and warnings regarding ckd from family members who want to give advice and help. I chose to keep this one private. My latest egfr went from 30 to 34, so I got a bit of a boost from that. Still exercise and eat reasonably and enjoy life!

@calvinrare
I was diagnosed Summer 2024. 2 tumors were found incidentally AFTER they found, again incidentally, a tumor on the bifurcation of my carotid artery. The neck tumor was put on a 9-mo hold while they saved my kidney. Having been darn healthy for 68 yrs, it eas a traumatic shock, and I still have valleys of depression and worry, because CKD never gets "better". I'm 70 now and because Im considered Intermediate risk for recurrence, I see Mayo every 6 mos. They are watching a small cyst on the other kidney which, at last visit in April, shows 'suspicious for neoplasm" & they spoke of possible biopsy this next visit. Ive been having flank pain for the past 2 mos.
When they 'saved my life', I was determined to not 'mess this up'. I eat for my labs, I do 6 mi/30min cardio on stationery bike daily, stay hydrated and active..but sometimes I feel like a slow moving tsunami is advancing on me. Sometimes I find a quiet place and cry it out. Sometimes I feel like I need a giant punching bag to pummel til my knuckles bleed. After 2 yrs I really have only my husband to talk to about this monster and he's very compassionate, but I hate to make it wear on him. So, generally I tell nobody, because I feel like folks are tired of hearing about it and are so far from the paradigm I live in, they have no clue. I do get increasingly wound up as my semi-annual treks to Mayo get closer. I do get irritated at the fact that beef, a good smoked sausage, sodas, an occasional beer or wine cooler, and having to actually WATCH healthy foods for too much potassium and phosphorus and calcium. (I do well with the salt and sugar end of things without trying).
I wish I could provide adequate moral support to you, but the reality of CKD is more than daunting. I am pretty stubborn and refuse to let the Monster win, nut sometimes it just overwhelms me. Don't throw in the towel and keep fighting!

@calvinrare Welcome to Mayo Clinic Connect. You have indeed asked a great question, and concern that many of us live with. We all handle things differently.

What has worked for me, is knowing I am not alone in this situation. While my particulars may be different than the person next to me, we share similar feelings. We suffer the scan-anxiety that includes bloodwork. We watch our diets, and learn to forgive ourselves when we slide off of it for a day or meal. We grieve how we spent our lives before "the diagnosis" and how it changed the way we socialize.

Since starting dialysis in 2022, my world has shrunk. I am also on treatment for a blood cancer. But, I have learned to find the joy in the everyday things. Do I wish things were different? Definitely. But it has been work, and a challenge, to find those joys sometimes. A challenge, something I have gratefully accepted.

@calvinrare, do you feel comfortable sharing where you are at on your journey?
Ginger

All of the above responses, and here's mine. Excellent questions, and one that I truly never really thought about. That said.....I come from a family with a history of PKD. My father was on dialysis for15+ years, 3- 4 times each week, all while still working. I saw the physical and emotional toll it placed on him, and having been diagnosed myself in 2015, this has weighed on me since then. Would I need it? If so, when? Would there be alternatives, etc. ? Back then, transplants were not a discussion point. Fast forward, and one of my brothers (I am the youngest of three), four years older than me, was in poor shape at 69 and facing dialysis. Sadly, he did not make it to that point due to complications post-surgery in 2024. Not my intention to be a downer; this is just a fact and risk of any surgery. He was 69, and beyond the sense of loss of my brother, it scared me as to what was in my future. In April of 2025, my GFR dropped to 19-20, and I was told I was now qualified to start the evaluation process for a transplant. I was listed at four centers in FL, and then the concerns were about when a transplant might happen and whether I would get it before requiring dialysis. Did I worry, of course, but not too deeply, as I am optimistic by nature, and extremely fortunate to have a loving and supportive partner in life. So much so that earlier this year, she donated a kidney on my behalf! After she recovered, I activated my voucher, and then my "worry or concern" was, as an O+ person, how long might it take to get the call. Well, it came last week, and I am currently scheduled for a preemptive live kidney transplant in the coming weeks at Mayo Clinic! So, that's awesome news, but then the newest concerns: Will I catch a cold, will the donor stay healthy and/or not change their mind? So, there are always things we can worry about, even when the news is positive. But I think the key is to remain optimistic and do our best to remain healthy. Having a good group of supportive friends is also a great benefit. I hope I answered your questions and did not ramble on too much! 🙂
PS: When I got the call, I was so emotional I could barely get the words out to tell my much better half!

@michael219 Thank you and Ginger for sharing...It is helpful and reassuring to read what happened with you and encouraging not to feel too alone and maybe it won't be that bad..not really having someone close that I can outgrabe with....at 87 I try to eat CKD healthy and pour myself into my art...but hearing that someone has continued on is encouraging...I find it hard to imagine in my situation how I will paint/,write and manage my finances (eyes now going after cateracts etc..DMD and glaucoma rt eye) maybe it will not be so bad. Thank you.

@michael219 Sending best wishes for this upcoming surgery, and that there will be no "speedbumps" to delay it! Would you share which Mayo Clinic facility this will happen at, please?
Ginger

@fromthehill You're welcome! Please feel free to share your thoughts here. We all need a place to feel comfortable and welcome. Knowing there are others who are going down the same journey is important.

We each find our path that suits us best. Hearing what works for our fellow travelers can be a great education! As you mentioned, healthy diet seems to be the greatest thing we can do to help ourselves.
Ginger

@gingerw, of course, it will be at Mayo Clinic in Jacksonville, FL.

My CKD is due to diabetes and a long ago problem with hypertension (high blood pressure), the two most common causes of kidney problems. In 2005 I had a pancreas transplant. At that time I was told that I had a mild to moderate kidney problem. It wasn’t called CKD and no stage number was mentioned.
My pancreas transplant was my personal miracle and things were great for a little over a decade. Then the transplanted pancreas function started to decline. I was evaluated for a simultaneous pancreas kidney transplant (SPK) in 2016. I was told that I did not need a pancreas transplant but would eventually need a kidney transplant &/or dialysis. From that point on my priority became controlling my diabetes first and second learning everything I could about CKD. I learned about eGFR, kidney function labs, hydration, renal diet, dialysis, transplant….. My eGFR bounced from 14 - 42 during that period of time and my nephrologist proclaimed that I was mainly Stage 4 CKD. I was approved and accepted for kidney transplant. I was listed for kidney transplant INACTIVE at Mayo because I was a bit too healthy for ACTIVE listing. Active listing requires eGFR less than 20. My eGFR was above that (note the “bouncing” mentioned above). It finally settled in the low 30’s and has been there ever since. This past March I was delisted completely! I guess I’ve taken up too much time and space for the shape I’m in! I was assured that I could come back in the future for reevaluation if my situation changes!
Long story short (too late), yes it is emotional and challenging. Each of us is different. There will always be folks that seem better off and plenty that are way worse off than we are. Mayo Clinic Connect exists for us to share our stories to give each other hope and encouragement along the way. We are not alone.