← Return to Chronic Kidney Disease of Unknown origin

Discussion

Chronic Kidney Disease of Unknown origin

Kidney & Bladder | Last Active: 17 hours ago | Replies (12)

Comment receiving replies
@cehunt57

@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.

Jump to this post


Replies to "@ralfie welcome to Mayo Clinic Connect. It sounds like you are doing all the right things...."

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.