Has anyone had HUGE swings up and down in GFR over time ?

I’m sorry you are dealing with so many confusing lab results. In my experience, CKD has similar fluctuations. My thoughts would be:
1. Continue on your healthy lifestyle.
2. Make sure you have trust in your physicians.
3. If you do not have one already, you need to have a good nephrologist.
4. Do not hesitate to get second opinions from nearby transplant centers.

Are you a candidate for dialysis treatments or a kidney transplant?

Thank you for the response. 1. I will most definitely continue to follow the healthy lifestyle. 2. I do not trust my physicians, several reasons, one example - two weeks ago I visited my Urologist, when the blood was drawn for this latest lab, it was a Comprehensive Metabolic Panel, and as indicated in my original post the eGFR was 53, based on creatinine. During that visit, I asked the Urologist his opinion on doing a C - Cystatin eGFR test to get a more steady eGFR result, as it’s my understanding that the C-Cystatin test is influenced by less factors. He responded “ a what test?” . I said a C - Cystatin eGFR test and showed him on my phone what it was. He said “ I have never even heard of that test”. This is a board certified Urologist, with 20 years experience, at the largest Urology practice in Florida, USA. ????? 3. I do not yet have a nephrologist, I have an appointment with one in 2 months, ( I just made it, first available date). 4. I will definitely look into a second opinion from a transplant center. 5. I do not think I am a candidate for dialysis treatment or a transplant list, from my research, but I am already looking for a living donor.

@faithfully123 Welcome to Mayo Clinic Connect! I see you are taking high blood pressure medications.

There can be several factors in reviewing our eGFR numbers, and how those tests could be affected. Variables to consider include: if you were sick or recently sick before a blood draw. Level of hydration or dehydration on the day of blood draw. A different lab was used to process the samples. If you exercised before the blood draw. Even if you were fasting or not for the blood draw.

Many of us have co-morbidities, that is, other health concerns going on. Seeing that you have an appointment with a nephrologist, ask them to place you on a cancellation list, in the event someone has to cancel and you can get in before two months out. If you have printouts from your bloodwork results, take them with you.

As far as researching living donor, it is good to be starting that task, but most transplant centers will tell you that your current eGFR is still high enough to not consider transplant. And dialysis is really a treatment for those of us who get to 10-15% eGFR. That said, I am glad you are looking into all of this. It's a "firehouse of information", isn't it? Please feel free to ask me any questions you have!
Ginger

@gingerw Thank you soo much for the response. I see from this forum you are quite active, very knowledgable and very compassionate. I applaud your strength and your commitment. You are in my prayers.

Yes, I have my Urologist sending over everything ( labs, scans , etc. ) to the Nephrologist. I am on the cancellation list. I understand that transplant and dialysis is not the course of action for where my GFR is at now. I am being proactive ( and maybe paranoid ), in case my one remaining kidney were to loss function, very fast. The fact that my left kidney severely atrophied and now has little or zero function, and this happened at some point in the past 11 years, with no explanation or hypothesis by anyone as to why, when, how fast, or if my right “good “ kidney could do the exact same thing has me rattled and on edge, worrying. Also, as a constant stone former, I fear an Acute Kidney Injury in my right “good” kidney from a stone or stones, and a fast and huge loss of total kidney function.

As far as questions, is that enormous type of swing up and down in GFR even something anyone experiences? I read these studies taking about all cause mortality rate increasing from a drop in GFR at the same rate as a RISE in GFR, and they are talking about 5 to 10 points up or down, and mine has moved over 50 points. Frankly, that freaks me out, leaving me confused.

Thank you again Ginger.

Regarding your EGFR swings, you haven't by chance had CAT Scans with contrast dye have you?... After a couple of Cat scans several years ago I had a result of 28!... Panic time... Laid off the contrast dye and my most recent test just last week was 36. I have little hope it will ever get much above that, but going up is a lot better than going down. I am a former smoker, well controlled Diabetic, well controlled HBP, social drinker and cancer survivor that took a lot of Chemo. Everything pointing against me, but as long as I stay away from the dye it seems stable. Low, but stable...

@joefriday49 Thanks very, very much for your response. I pray you do well on your personal health journey. Yes! I did have one CAT scan with contrast of my kidneys done in April, 2025 and then I did have a drop in eGFR! I had feared that would happen. I was very hydrated prior to the scan and I discussed the contrast scan thoroughly with my doctors, both Urologist and General Practitioner. They used low osmolarity contrast, supposed to be gentler on the kidneys. I don’t know? Prior to that I had not a CAT scan or any scan at all with any contrast for over 30 years, but yet in January 2023 and April 2024, my eGFR was very low, and then it moved up.

It’s a tough place to be in and I’m certain we all feel this - non contrast CAT scans are like looking at shadows and hard to rely on, but I do not want any more contrast dye in my body. I am having a Comprehensive Metabolic Panel done in 2 weeks, so I will see what my eGFR is then. I pray that it moves up. I also have my first appointment with a Nephrologist in about a month. I will see what type of “workup” he recommends.

To be honest, last week during a visit, my General Practitioner, who has been my doctor for 35 years and also my personal friend , told me that in his opinion “healthcare has become dehumanized, you are just a number now”. He verbalized what I have been feeling the past few years; it’s a strange place to be in.

I think the chemo treatments set my baseline to a very low number, but then
I started getting at least one CAT and one PET Scan every 3 months. A year
later they were moved to every 6 months for the CAT and once for the PET.
Now 11 years later I only get a CAT per year. Sometimes with Contrast,
sometimes not depending on my EGFR at the time. It always drops between 2
and 4 points and then slowly recovers. I feel like it's damaging my kidneys
every time but no one seems concerned but me and the radiologist...

@joefriday49 I agree, almost no one seems concerned.

The entire CKD treatment process seems to be inherently flawed. As I see it, It’s basically a non treatable, non reversible disease. Diet is important, as are avoiding many things. Yet, most doctors don’t even tell you about your eGFR and CKD until you are below 60 - stage 3. Then, most nephrologists don’t even want to see you, until your eGFR is much lower then 60 AND you have other symptoms. For example, I self referred to a nephrologist when my eGFR was 53. My urologist has NEVER even mentioned my eGFR.

From what I gather from my research, many , NOT ALL, nephrologists do not seem overly concerned about much, until eventually your eGFR and symptoms get to a point where you need dialysis. If that occurs.

My General Practitioner of 35 years told me last week “CKD doesn’t usually kill you, what kills you is cardiovascular issues from the CKD”. I responded “okay, if the CKD causes cardiovascular issues that kill you, then the CKD does kill you”!

As @gingerw said “ it’s a firehouse of information”. It is. Deciphering it is very difficult. Am I over reacting? Am I under reacting? I think I have to take this in stride, as I am early on in the CKD for now , thankfully, and live healthy and take each day as it comes. For me, that is much, much easier said then done.

@faithfully123 welcome to Mayo Clinic Connect. So sorry to read about your experiences with kidney stones and the atrophied left kidney. When the findings are “non obstructing” stones does that mean there is nothing they can or will do about them? You mentioned sometimes there was pain and sometimes there wasn’t. How are you feeling now?
In regards to the “huge” swings in eGFR. That sure can be nerve racking! I’ve experienced that also. I found out I had “mild - moderate kidney disease” in 2005. At some point I started researching this (learned about kidney function labs, NSAIDS, the role diabetes and hypertension have, hydration & renal diet, dialysis, transplantation …..) I self referred to a nephrologist. In 2016 I noticed my eGFR was bouncing between 14 - 42. That is similar to what you described as “huge swings” in your eGFR. But overall all of mine were lower than yours. I think higher is better. Currently my eGFR has settled in the low 30’s.
That is good that you are getting established with a nephrologist. I always had the impression that nephrology is the kidney specialty and urology is the bladder specialty. Did you end up with a urologist because of your kidney stone situation? Maybe both specialists is a good idea? Hopefully it is going to be one of those things that “can’t hurt, might help”. Will you let us know how your nephrologist appointment turns out and what you learn?

@cehunt57 Thank you very much for the warm welcome. When they say the stones are “non obstructing”, from what I have learned they are NOT blocking the flow of urine from the kidney. They can be removed, but so far the Urologist has not indicated they should be removed.

Right now, I don’t have any pain, thankfully.

From what I have researched, a Urologist deals with the flow and a Nephrologist deals with the function, so in my case I think I need both. Yes, I started out with a Urologist because of the stone situation. I agree with you that both specialists are a good idea.

I will certainly share all my experiences, including the Nephrologist appointment and what I find out and learn, with the Forums. Prayers for you and all here.