Declining GFR with no cause found--Mystery Needs ideas

[Mystic100]

First diagnosed at 40 eGFR in 2021, my nephrologist started testing and tracking. No obesity, no diabetes, no high BP, no kidney injury, clear ultrasound (twice), no genetic markers, clear biopsy ("all normal structure," so no glomerular disease diagnosed).

The nephrologist admits to not knowing what is causing my declining function, with GFR now hovering around 30 and RBC hovering on the fringe below normal. Markers seem to have taken a dive after a round of COVID-19 in July '23, but apparently, there's no connection that she's aware of other than "maybe."

Symptom-wise, I feel as good as ever—none of the issues like water retention, fatigue, or shortness of breath. I'm a 72-year-old male, so right now, what I'm left with is my kidneys are just old and tired!

My diet is pretty clean. No red meat. Lots of veggies. Some wine, though, so that's next to go.

I am also considering a second opinion, which the nephrologist actually recommended, so I wonder what people think about going to Mayo or Cleveland for an opinion. Do they have anything to say that would clarify this mystery?

I'm also ready to consider alternatives like Ayurveda, chi kung, and meditation healing practices.

Thoughts and ideas are welcome. Thanks

[maven123]

I am the same. I have been stage 4 gfr 23 since 2018. Covid caused the gfr to fall. I have decided against dialysis. Just waiting to see what happens.

[Mystic100 in reply to maven123]

Hi Maven - Are you willing to say more about how your arrived at your decision? I'm feeling the same but haven't hit the level of certainty you have and I'm curious about your journey getting to where you are. If you want we can connect offline.

[maven123 in reply to Mystic100]

I have given this a lotof thought. I am 77 and have survived bladder cancer, prostate cancer, a twisted intestine and being sick with COVID for two years. I feel fine, but sometimes you say enough. Her son evicted me from her home and I have been living in an assisted section of a nursing home. I have a son and a sister, but they have expressed no interest in me staying with them or dealing with whatever needs I have. All of my friends and relatives who called when I was sick with covidand the passing of my wife have disappeared. I only have a female friend who I met when I was recovering. I have no one to take care of me if I go on dialysis. I am doing my best to stay active by volunteering at a local museum and doing pro bono work as a family mediator. I have come to terms with ending. I am not afraid, but I want to live life as full as I can. I have always wanted to be in medical school. I have determined the only way I can get in is to donate my body for reseach. I expect I have 6 months to a year left. It is ok.

michael garelick

[e-mail]

[Mystic100 in reply to maven123]

Dear Maven123. You've been through a lot and you sound like the kind of person who learns from life's lessons and makes peace with the moment. I can see why being a mediator is a role you choose as a way to give back.

Everyone with CKD is forced to look at mortality, time, and relationships in a new way. That includes whether to go on dialysis or not, I believe. Mainstream medical science is built on the notion that it's job is to keep everyone going till they're 140, no matter what the mental, physical, emotional and spiritual cost. I, for one, think personal agency and freedom to choose is a natural right (as long as it hurts no one else).

I wish you strength and clarity of purpose as you go on.

[maven123 in reply to Mystic100]

Thank you. You sound like the friend I have been looking for.Mg

[MinnadeParis in reply to maven123]

Thanks Mavin, sorry for your living situation. I appreciate your candor. I made mine bc I watched my BIL suffer from CKD for many years (+many other conditions). I admit that he didn’t take good care of himself. But 8 yrs in dialysis was torture to watch. My sister was his caretaker, and their life revolved around 3x a wk dialysis. Nothing else. I was diagnosed after he passed. I have only one daughter married and a grandson. They live in another country and have no plans to move back to US. I love to travel, be active, very social, have (had) dinner parties, etc. I know the restrictions of dialysis. I am taking good care of myself, have an excellent neph, and I still have some bucket list places to go…..hopefully. My daughter and SIL would gladly have me move with them, but I don’t want to leave my home and friends at this age. I also will see what happens. Many ppl live well in stages 3 &4.

[MinnadeParis in reply to maven123]

Hi, I’ve made the same decision. But would also like to know how you arrived at yours. I’m 3b 75 no underlying (controlled bp). I’m willing to share why I made my choice.

🙏

[Marvin8]

Am 65. First time, Covid had no effect on kidney function. Second time, it dropped by about 5 pts. Kidneys are slightly below normal size, although no remarks on the ultrasound. Diagnosed in 2016 with 59 eGFR. Am now at 48. Not a good slope. Not terrible one. Stay hydrated, and be sure to exercise.

[userotc]

There's several reports indicating covid adversely affecting kidneys whether or not CKD sufferers eg link below. This may be a factor for my mum whose egfr dropped 6 points at recent test and we will likely mention that at nephro consultation in a couple of days. Subsequent shingles and/or its prescribed drug may also have contributed.

Note: there's quite a few scientific reports indicating negative impact on kidneys of covid vaccination too but maybe best not to share those!.

hopkinsmedicine.org/health/...

[nonna70]

I feel your pain. Our kidneys are getting old!

[Mystic100]

Thank you all for your replies, concerns, and moral support!

[vinadhun2]

Hello

You seem to be exacxtly like me. I am 76 years and have no other issues. All electrolytes are normal, no protein in URine. no diabetes, BP is normal. Everything is good. But my creatinine is 2.0.

I had met nephrologist who has advised to monitor at regular intervals. this is due to old age.

In case you get to know any further information or updates, please let me know, so that we can exchange our ideas.

By the way, I am from India and I am todl by everyone not to try Ayurveda or any chinese medicines. So I am keeping away from these

[bumblebee_tuna]

you didn’t say if you got a kidney biopsy. Maybe it was ruled out due to age?

[Mystic100 in reply to bumblebee_tuna]

Hi Bumblebee. Yes, I had a biopsy about 10 days ago and the results came back "all normal structure.

(PS- I mentioned that in the first paragraph🙂

[CKD3Khan]

From my own experience, which is recent, I am considering a trip to Mayo, Minnesota. My awareness began in October, BP was 225/148, Creatin was 6.1, Urea at 80. My primary urged me to go to the ER right away, he has been very helpful. Spent 4 days in the hospital, IV of fluids, brought my Creatin level down to the 4.5 level. Urea down to 50. Nephrologist suggested this had been going on for a while, likely had kidney damage. Urology felt enlarged prostate may have been the cause. I am on BP meds and Prostate meds. Urology has changed their opinion 3 times. Nephrologist saw me one time, since it has been a practitioner, doesn't believe my current Creatin will improve (2.25). Nutritionist said cut back on sodium, potassium, dine out less, eat less red meat. Eat more veggies, leafy greens and lots of fruit. Meat protein should be the size of a deck of cards for a portion. Well, my sodium was already on the low range almost out of range, potassium a little high from eating oranges and bananas. I eat mostly chicken, beef or pork about once a week. So, I've added more fish to the diet. Eating more lettuce, asparagus, broccoli, cauliflower and kale. Adding nuts and seeds. Have read eating Quinoa is good, supposed to have all 9 essential amino acids. I'm doing most of this on my own because guidance from medical team has been very limited and vague. I changed my diet and water intake dramatically for one week and was fortunate to have another blood test, I did see slight improvement in one week. Hope the trend continues.

My nephrologist says I'm CKD Stage 3B, eGFR is 30. Will see you in 6 months.

While they say this has been going on for a while, they don't know how long. For me, it seems to have come on quickly. I have suspicions that Covid may have something to do with it, but the med team doesn't believe there is science to support that view. I know others that have been healthy, had Covid or the vaccines and have since become ill with a variety of ailments. Coincidence??

I'm hoping my health insurer and primary will approve a visit to Mayo. I reiterate, you should consider Mayo or Cleveland too.

[Artinnumbers]

I am 66 and in almost the exact same spot. EGFR at 33. I tried vegan, no help there it still declined from 42 to 33 in 6 months. I put in for a telemedicine appt with Mayo Clinic in Jax fl.