Just found out I have chronic kidney disease (CKD): I'm scared

Don't feel to bad I was told recently that I also have CKD. I did get my A1c down the last few months. My GP was
thrilled. Mine was 6.7 now it is 6.2 At least your Nephrologist didn't tell you you only have about 5 years left. I was basket case for 6 months. Find a pshycologist to talk to. Maybe some happy pills. My GP said that is probably more than 5 years because my tests are up and down and I dropped my A1c.
Watch your salt intake therefore your blood pressure. And watch your A1c or daily blood tests. I have Paxil that I took during menopause so it got increased. And a therapist to talk to.
Hope you feel better.
Espire

@luandmark welcome to Mayo Clinic Connect. Rather than thinking about CKD, it is better to learn about it. Learn about causes of CKD, kidney function labs, medications affecting kidneys, renal nutrition, hydration…..
Then you can start to put together a treatment plan to slow or stop the progression of your CKD. What does your provider recommend that you do?

Have a good kidney doctor. See a qualified Renal Dietician and follow a good kidney diet. Limited to quality and quantity of proteins, no soda (to limit phosphorus), watch potassium), very limited salt and follow kidney doctor’s fluid intact required. The plan now should be to slow down further decline. I was scared too. I am a eGFR of 19. But I have determined that I will do Home Dialysis and am researching it in depth. I am going to be the one in control as much as possible. Don’t be scared. Be proactive and strong.

Breathe, Get with a Nutritionist to get a proper diet for cdk and diabetes. Drink water,avoid caffeine, no processed food and berries. One day at a time, you can do it

I had a eGFR of 16 about 6 months ago. Ago. Started eating more veggies & fruits. Walking daily on treadmill for about 15 min. My eGFR went up to 19. Just tested again & it is 20. I’m just my saying it’s never going to get much better than that but I’m hopeful that I won’t have to do dialysis…

@jaxd67 Hi jax67. Cheryl and Ginger provided important advice and support, which should be helpful. I'm a relative newbie here and can't provide medical information, but I can speak to "trying to shake the internal pity party." I'm fairly sure that everyone here has felt the same way to some degree. I sure have.

I was diagnosed with both in 2023, but things got more serious earlier this year. And, after a 10-day hospitalization, I suddenly was terrified although my eGRR initially was 3A and now it's 3B (which is still low).

But suddenly, I started experiencing a bad case of fear and anxiety, which impacted my blood pressure and produced stress hormones like cortisol and adrenaline. It turns out that my cardiologist was of great help, because I can say anything to him, and he always listens. And, what I've learned is that everything is intertwined: particularly our blood glucose, blood pressure, kidneys, and our brains (mind-body issues), and I ended up with cognitive impairment (which has since cleared up), because I was so frightened, and was internalizing my fear.

But, once I found this site, it made a huge difference. "Fear often jumps straight to the worst-case scenario (whatever yours is). My first post was so long, that that I deeply thank everyone who bothered to read it. So, I recommend that if you have any specific concerns, feel free to share them. Many times, information will help resolve things. Other times, it's just getting things out in the open.

You've already proven you have the skill-set to deal with this, because you are a "pro" at managing diabetes, and have done so for decades. And, you'll find other people here who are in your "shoes," although I'm not. But, my concerns were more about my age, I'm 76, and I was worried about managing two chronic illnesses. And, I read some awful information online about people 75 and older, which is why I only use sources that have been referred to me, mostly by Cheryl and Ginger.

My second worst mistake was believing all of the conflicting nutritional information before I met with a diabetic and renal nutritionist. Ginger wrote to you about larger issues. But, I started eliminating specific nuts (yes...that was obsessive) as well as avocados, cottage cheese and a dozens of other food. In my case, I can eat a lot of stuff that others can't because of my CKD stage, and my phosphorus, potassium, sodium, and calcium numbers. My nutritionist said my diet was way too restrictive, and a member of this community shared her diet with me, because I asked and we have similar tastes in food.

All I'm really saying is this: I stopped reading most online research that wasn't sourced, and started sharing a lot more here, which has changed everything for me. Also, I regularly use my accordion for breathing exercises to reduce my stress, and because it makes me laugh that I play an instrument that is so "uncool."

P.S. I just realized this post was from June of 2025, and a lot of these questions were answered. But, I'm sending it because they might be others who are having similar issues.

@martychambers Hi Marty. I just talked to a diabetic and renal nutritionist, and she said she has a number of patients (it may be five or six) who have an efGR of 18 and have lived with it for years. I wasn't really paying attention because my eGFR is far higher, and it was our first meeting, but I thought it was really encouraging. Thought you may want to know.

@luandmark Hi landmark. I just saw your comment. I read the headline story too, and responded to it. It was written in June of 2025. I felt the same way you do, but I was able to get help from my cardiologist, whom I've known for a few years. And, he referred me to a nephrologist, whom I'm seeing in December. I also share a lot here, which helps. I was able to overcome my fear and I think you can too. If you're on Medicare, you should be able to see someone for free. The psychological response to this disease is widespread, and should be written about more. I'm a relative newbie, so I don't have a lot of stats, but I feel like a different person now that I've expressed my fear to a doctor I trust!

@golfmama1 Hi! I just responded to Marty above, and I believe the renal nutritionist I talked to said she had five patients who have lived for years with an eGFR of 18. I can't remember how many years, and whether they were on dialysis, but can check the next time we talk...which isn't until the end of the month.

@espire I think that's unconscionable, and I'd fire the nephrologist. There is research being done every day that will change the treatment of this disease. I don't know your situation or your numbers, but there is always hope!