Want to hear from others who have Stage 4 Chronic Kidney Disease (CKD)

@anet Hi, I am 65 years old and am also stage 4. In the last 4 years my GFR has ranged from a low of 10 to a high of 17. My CKD is the result of a rare reaction to chemo for pancreatic cancer. Because they removed most of my pancreas, I am treated as a Type I diabetic. My greatest side effect is fatigue. I can do a lot of my normal day to day activities, but often need an afternoon nap. I am currently on the kidney transplant list at Mayo. My nephrologist says I am stable also - not on dialysis yet. I hope things go well for you and your husband.

Thank you, I hope you continue to be stable and if you need a transplant, younwill get it. Since I wrote the previous post wecwent back to the cardiologist because his heart rate was so low. 43. Took him off one of his BP meds Bystolic because of this. After reading more about Bystolic I found that it can cause kidney failure. We are now looking for a new cardiologist because he told us to let the kidney doctor prescribe a BP medication that would be good for his kidneys. Would really like to go to Mayo Clinic.

Hi @anet. I hope your husband continues to be doing ok. Coming in a little late on this thread but wanted to tell you I have been Stage 4 for over 24 years. I just turned 60. I am not on dialysis but my function continues to slowly deteriorate. I recently got accepted for the transplant list hoping for a new kidney before I progress to Stage 5. As of now, I'm able to work and pretty much live my life as I please except for all the doctor, transplant center and lab appointments. Fatigue is my enemy so I try not to overdo it. So, of course, you're worried, but keeping a positive attitude, will go a long way for both of you.

I am interested in talking with patients in stage 4 kidney disease to learn what treatments they are receiving. My husband is 75. He has high blood pressure which has been under control, but his heart rate was very low. 43. Cardiologist reduced one BP med and heart rate has improved, but diastolic BP is now high. He also sees a nephrologist. His gfr is low 20's. Nephrologist says his labs are stable and acts like he is ok. His diastolic BP has suddenly gone up to 100 at times. I am afraid he is near kidney failure, but nothing is being done. The cardiologist only took him off a medication that was known to lower heart rate and told us to go to the kidney doctor for help with the blood pressure. I think we need new doctors.

Hi, @anet - I've moved your post to this discussion where you were posting previously and connecting with others about stage 4 kidney disease. I'd also like to invite @randyr @jenniferhunter @valb68 @cpierce101604q @cgrammie2 into the conversation to talk about what treatments they or their loved one has received for kidney disease.

You mentioned you think you need new doctors. What are you thinking will be your next step, then, anet?

Thank you. We have talked about contacting Mayo Clinic. We are going to see what this week brings in being more satisfied with his care. I think we need to be able to have a cardiologist and a Nephrologist in better communication with each other. Our primary care doctor is good but we have three doctors adding and changing medications and this is not good.

Hi, my name is Alan, I'm 68 years old and I have stage 4 ckd. My gfr is 25, creatinine is 2.8. 20 years ago I was
diagnosed with bladder cancer, for the past 19 years I have had a neo bladder. One of my kidneys was blocked by scare tissue last year and was not detected until it was down to 15%. A nef tube was inserted with a bag to save what was left of the kidney, every 3 months it has to changed, out patient surgery. I would like to know if anyone has a reconstructed bladder for any length of time?

Hi @veteran, welcome to Mayo Clinic Connect. You may wish to read this discussion where @marcia_pez and @johnmclaughlin. John has been living with reconstructed neobladder since the 1990s.
- Bladder and prostate cancer, and neobladder reconstruction https://connect.mayoclinic.org/discussion/bladder-and-prostate-cancer/

Inadvertently replied. Sorry Disregard. Best of luck.

Hi @s6885, Your original reply was very informative. Your experiences as someone living with stage 4 chronic kidney disease are a welcome addition to Mayo Clinic Connect. We look forward to getting to know you. Can you tell us more about the relationship of sleep, weight/diet, exercise and managing CKD?