Connect
Living with Stage 4 Kidney Disease
My eGFR started to decline in 2014. In 2014 it was at 60, today, Sept. 2025 it's at 21. I have nephrogenic diabetes insipidus from long term lithium use. I'm off lithium and wonder if I could have been given a lower dose years ago, but that's in the past. My life is a healthy diet, no red meat, watch protein intake, low salt, lots of water (60 oz/day). There's really nothing else I can do other than be very careful with infection and blood pressure. My BP is normal. I recently got sepsis from a UTI. This is so dangerous with severe kidney disease. Do not ignore bacterial or viral infections. You can be treated with IVs at the hospital, very easy to do. It's pumping water and nutrients into your veins to keep your kidney function healthy. I even had this done at a hotel overseas. They brought the IV to my hotel room with a Dr present. I had food poisoning which caused diarrhea which in turn caused dehydration.
I have a first cousin who's lived with eGFR 20 for over 10 years. Yes, it is possible. She has no symptoms, like me and lives a normal life. If you take care of yourself you can live a long time with a low eGFR. It depends on your disease but also awareness of what is most dangerous to your kidneys. My Nephrologist at Mayo Clinic said to me...the thing that worries her most of her patients is sepsis. It happens quickly. Pay attention to your temperature, how you feel, more lethargic than normal, appetite. Stay positive, kidneys are amazing. They work very hard for you. 🙂
Like
Helpful
HugInterested in more discussions like this? Go to the Chronic Kidney Disease (CKD) Support Group.
Connect
@mrainne Thank you for sharing your experience with CKD. And in turn, your cousin's story, too!
Yep, we have to be on watch everyday.
Ginger
-
Like -
Helpful -
Hug
2 ReactionsI've been in kidney failure for about three years (currently in 3b), caused by long-term use of a medication for acid reflux. That medication is omeprazole, formerly known as Prilosec. I used it for 30 years, with no clue it was going to effect my kidneys.
-
Like -
Helpful -
Hug
2 ReactionsI have been on lithium for 43 years. At first way over dosed at 2400 mg daily then reduced to 300 mg about 15 years ago. (After it was discovered that as low a dose as possible worked better). But I got CKD about 15 years ago. Now with stage 4 with a 25 eGFR. Nephrologist is recommending Jardiance because it is approved for CKD to stabilize eGFR. But I have read real risks with UTIs and severe
genital infections and not recommended for a eGFR below 30. Has anyone tried it? Or know anything about its benefits for eGFR 25.
-
Like -
Helpful -
Hug
2 ReactionsMarty, I was diagnosed with CKD nearly 40 years ago; my eGFR is currently in the 20's. Like you, my nephrologist is recommending Jardiance or Farxiga to stabilize my eGFR. However, like you, I am concerned about the risks and infections. So, I would also appreciate hearing from others who have tried one of these medications. My nephrologist wants to check my renal function after I have been on one for 2 weeks. So, I may be able to give an update about any benefits derived.
-
Like -
Helpful -
Hug
1 ReactionInterested in whether it stabilizes eGFR and/or causes UTIs.
@martychambers @bettycll I have been reading and hearing about these medications and what they are proposed to be able to accomplish. Frankly, it seems too early to tell what side effects someone could experience. Like all treatments and medications, it can vary from person to person. And there are the trade-offs we have to consider, right? The fine print and rapid talk on a commercial, telling us what could happen, plus the caveat that "there may more side effects not mentioned here" is a daunting thing to consider!
Ginger
@martychambers Hello
My name is George Hansen and I have the same identical issues as you
My GFR is 24 and my Nephroloist is recomending Farxiaga which I have I have picked up from pharmacy 3 weeks ago and have not opened...I would be pleased if you receive any input that you can share with your recomendations it would be appreciated
It sounds like there are a LOT of us with similar issues! Like George, I did pick up Farxiga from the pharmacy and held it for a while. However, at the urging of my nephrologist, I have now started it (one day, so far no issues :-)). I have a renal function panel scheduled for 2 weeks. It is interesting that she thinks we will see a difference in just 2 weeks!
Since my cardiologist also recommended it (either Farxiga or Jardiance), I was being 'encouraged' by both specialists to try it. I am extremely concerned about the possible side effects, but have decided to give it a try. I would certainly like to see my eGFR stable. I will keep everyone posted.
Several people mentioned medications that caused issues with their eGFR. This is my experience. I don't know if any others of you have experienced AFib. I found that when I was on medications for AFib, my GFR plummeted (it went down to 12). In fact, when I stopped the antiarrhythmics, my GFR went up enough that my nephrologist had me repeat the labs, as she was sure it was an error. So, if you are on any antiarrhythmics, that might be a factor in your low eGFR according to my personal experience.
-
Like -
Helpful -
Hug
2 ReactionsThank for your update...it's appreciated. I plan on putting my Doctor to the test next week with many quetions that will me to or show me that the aforementioned medicines really work...i will keep everyone updated George
-
Like -
Helpful -
Hug
1 Reactionhow do I find the nephrologist that will prescribe medication?
The three nephrologist that I’ve been to in the past 10 years only talk about dialysis and I would prefer to slow down the progression through a combination of lifestyle, medication, and good luck, but I don’t know where to find the help I need.
My insurance company Only will provide a list of physicians on plan and my PCP has been of no help other than the provider list of licensed nephrologist