Chronic Kidney Disease of Unknown origin

@ralfie welcome to Mayo Clinic Connect. It sounds like you are doing all the right things. I am diabetic and have a history of hypertension (high blood pressure). In 2005 I was told I had mild to moderate kidney disease (and I had a pancreas transplant at that time. I was told I did not need a kidney transplant). In 2016 when my kidney function decreased I was evaluated for a kidney transplant. I was approved and and accepted for kidney transplant that year. I have been inactively listed for kidney transplant. The listing is inactive because the eGFR isn’t bad enough for active listing. My eGFR has bounced since that time between 14 & 42. It is currently in the low 30’s. I’m telling you this because I’m proof that it is possible to go a long time before dialysis &/or a transplant becomes necessary. If you don’t mind me asking, how old are you? I am 68.

Thanks for commenting. I’m 61. Also Thanks for the reassurance and my nephrologist has told me this as well. I feel great. Part of my frustration is with different diet changes or maybe it’s just typical with ckd that may be causing other blood levels to be off. For example i cut way back on dairy, then my calcium levels dropped too low. One if my other doctors recommended i take a low dose vitamin d for seasonal adjustment disorder and my vitamin d level increased to toxicity level. My hemoglobin level decreased but iron levels and ferritin were normal but i was anemic for a while.

Im not used to not used to having a condition that nothing seems to improve and its not stabilized.

I talked with the kidney foundation and they recommended that I ask for a kidney biopsy. They too were puzzled with my ckd being labeled as “unknown origin.”

I'm not diabetic, I’m not obese, i don't drink alcohol (accept a couple of drinks during holidays), i drink plenty of water, cut back on salt etc. i have had a mitral valve repair surgery many years ago and more recently cardiac ablation for a heart flutter, which is not unusual with my calve surgery. My blood pressure/ heart rate was slightly high but under control with the lowest dose of metropolol. Nephrologist doesn't believe my blood pressure is a cause because its very much controlled.

My cardiologist talked with my nephrologist about trying a newer blood pressure med that helps protect kidney function, but my nephrologist said he wasn’t ready for that switch because my blood pressure is so well controlled with current med.

I just would like to have a biopsy to try to find a cause and perhaps try a nephrologist that nay be mire experienced with ckd of unknown origin. Where i live there are nit many nephrologist but I’m less than an hour from Boston as well as the Dartmouth medical center in New hampshire

Sorry for venting, but its nice to communicate with someone who understands.

@ralfie Let me echo the welcome to Mayo Clinic Connect. Remember, it's okay to vent here!

While high blood pressure and diabetes are often recognized as the leading causes of chronic kidney disease, there can be other factors involved in drops in kidney function. Medication side effects, genetics, and more can play a role. I myself was experiencing the same thing. There was nothing to point out why, so they did a kidney biopsy. The diagnosis was a very rare chromosomal abnormality, where a fibrous collagen is clogging my kidneys' filters.

I hope your medical team will continue to pursue the root cause of your concern, so you can get it addressed.
Ginger

Hi Ginger, your message help me solidify that a biopsy maybe the next best step. I want rule out possibilities. I have full blood work and a urinalysis coming up in about 3 weeks followed by a neurologist appointment. I will see what he says this time and if he doesn't bring up a biopsy. I will and try to push him to request it. If he won’t, I’ll ask why and then weigh it out with my pcp/cardiologist and pursue
a new nephrologist referral.

Re medications that i take, he didn't feel any were linked, but its the combination interactions that are unknown. I joined a facebook ckd group and many people from other countries keep asking about how many covid 19 vaccines i had and which brand. They tell me in their countries the research is starting to support a link to ckd. Even if thats the case, how is it proved is my question.

Thanks for providing your comments. It helps! I also hope your journey is going well.

@ralfie Going out on a limb here. While there have been people who look to vaccines, and specifically COVID, as starting or creating various health conditions, I see it from a different angle. A vaccine of any type creates an immune response in our system. Our bodies remain a mystery in many aspects, even after all this time and research. Receiving any vaccine is simply triggering our individual immune response, and that response may vary among different individuals, given our unique health status.

When we have lessening kidney function, it is standard protocol to track down and treat the underlying cause in order to mitigate the decline, and also treat the decline as much as possible. If you have not yet, perhaps speaking with your pharmacist to review your medications, both over-the-counter and prescribed, to make sure there are not unwanted interactions, will be a good step. Rule out whatever you can to figure out the decrease in function. A complete set of blood work, perhaps even a thorough physical exam. We have to advocate for ourselves a lot of the time.
Ginger

Thank you! I will reach out to my pharmacist it is a part of the insurance company that provides my health insurance. I do have complete physicals regularly and regular exams by my cardiologist. I will push my nephrologist to do more to find the root cause.

I would love to know as much information as possible about the post studies with the Covid 19 vaccine and CKD decline. I am trying to research this myself as my eGFR began to decline significantly after I received the vaccine and two boosters. My immune function was through the roof and I was also diagnosed with lupus (not Lupus nephritis). Even though I am a type 2 diabetic my eGFR was between 50-60 until after the vaccine. It took a dive then went back up, but not to what it was pre-vaccine. I hear there are some studies going on at Yale. I would love to join any study.

Hello, i don’t have any specific info on the studies that sone folks mentioned to me. A couple of folks in a ckd group on facebook mentioned them to me. I didn’t pursue any more info. That FB group is called Chronic Kidney Disease (CKD) Support Forum.

I would have a biopsy done. I was diagnosed with Monoclonal gammopathy with renal significance by doing mine.

@gingerw @cehunt57 @ralfie

A drop in kidney function absolutely can be caused by factors other than diabetes and high blood pressure.

Drop in my kidney function was due to sarcoidosis (an autoimmune disease). The decline was over a very long period of time, and I was diagnosed with ckd stage 3b in 2013 after which my kidney function continued to decline.