Hello everyone, I've read that cystatin C testing is done because cystatin c based eGFR is less influenced by muscle mass and nutrition than creatinine-based eGFR. What I'm wondering is if cystatin C is influenced by anything at all, meaning if you get a cystatin C once a month for a year (I'm just making this up), and your kidney function has remained the same, will the cystatin C/eGFR values always be the same? It seems like with a creatinine based egfr, your eGFR value can be 85 one day, next month it's 70, and the next month it's over 100 even with no actual changes in kidney function. I hope this question makes sense. Thanks for any answers in advance.

Edit: for clarity

I’m just wondering what to expect with taking this medicine. I’m (31f) gfr 27 I’ve gotten a biopsy done but they couldn’t figure out what truly cause my damage. They are pretty stumped. They said something traumatic must have caused my issues as no one in my family has kidney issues.

I recently showed high potassium levels in lab results. No protein in urine.

Apparently, this kidney is at the end of a live donor chain. I kind of leftover as it were and happens to be a perfect match to me. I’ve been listed for almost 2 years and on dialysis for most of that time. I almost can’t believe it. I had to go into the hospital to fill out the paperwork this morning and I have a bunch of appointments on Monday with the doctors and the nurses and for bloodwork and I see the surgeon in the afternoon. On the 13th. I will have my preop and on the 15th the surgery , I still feel like I’m dreaming!

I’m a long time follower and commenter/poster on this sub as I have had proteinuria CKD for 15 years and I feel pretty well versed in the general sense of CKD. But I know absolutely nothing about kidney infections. Is that the same or similar to AKI?

I’m asking because my toddler daughter recently had a UTI and the infection spread to her kidney and she took antibiotics and everything is better now as far as the infection. I’m wondering if these infections commonly cause CKD or some kind of permanent kidney damage. I did ask the pediatrician and she said likely no lingering affects on kidneys, but I also know from my own experience that most primary doctors don’t give very good advice on kidney issues. I could take her to see a specialist, but I’m almost thinking that’s unnecessary and just cause more stress on her because even if there is a little bit of damage that was done there’s not really anything they do for it that I’m aware of.

My father who is a 55 year old male with a kidney transplant has been getting recurrent UTI for years. He has a history of hydronephrosis so now he has a long term foley cathera which they refuse to remove due to him retaining urine The only way it they are willing to do a trail is if he becomes mobile, which is limited due to also being a bilateral amputee and vision problems. The good news is he is motivated to walk again and he will receive a prosthesis for his leg after a long wait of for approval from insurance. These UTI'S have gotten to the point where I dont really know what to expect on the day to day basis and often puts him a state of confusion. I've done research about dieting and things that can help but he thinks I'm policing him but I am just concerned that he is anti-biotic resistant and he has to make some lifestyle changes to fight this bacteria. From the outside looking in I am starting to feel like the bad guy. Does anybody have any ways I can work on making suggestions without seeming controlling. I tried to tell him to reduce the starch and sugar , then one hour later he is requesting bread, noodles, cookies, juice, persevatives. Sorry about the rant but I'm getting frustrated I want to do anything possible to get rid of this infection and help him become more independent.

Is it offensive that my boyfriend suggests I should go on disability retirement because of my kidney issues? He knows I have big ambitions, I'm only 23, and I'm working hard to be successful and have a good job. One kidney works at 30%,other 65%

My cousin lives with me and was diagnosed with chronic kidney disease a few months back. Almost one month ago she tested positive for Covid. She just stays in her room, on her ipad and eats in her room too. How do I help her. She said she is still positive and should stay away but she has always been hermit and seems like she enjoys just isolating and is now prolonging her covid positive. Maybe I am just jumping to conclusions, has anyone experienced CKD and covid, any advice experience or knowledge you can share so I can better navigate this situation.

Hi, is anyone using Finerenone without having diabetics?

I recently started Finerenone but i don't have diabetics, anyone here on the same situation? if so whats yours results so far and did your gfr increased or dicreased?

If you have diabetics please share your results too.

Hello everyone.

My partner is 23 male and has recently been diagnosed with CKD stage 4. How do I support him? What do I have to know? I'm only 20 (female) and I'm so scared of losing him, he's so young still.

A bit of context, his CKD most likely is from use of steroids in the past as he was big on going to the gym. His doctor says there's not much to do but dialysis and transplant is not required yet, but he also mentioned that average life expectancy for his condition is 4-5 years.

I never thought he would get this sick. He has lost over 10kg in a short amount of time, has little to no appetite, has intense pain at night after taking his medication, can't drive anymore from lack of focus and just generally low energy and is in constant pain. I'm worried about our future together as I love him very much.

Please help. I've done my own research on the condition but I just need some support and feedback from people who go through the same condition too.

Thank you everyone, have a nice day.

Hi everyone,

I’m a 21yo male living in the united states. I currently am fully able work and enjoy life as is with relatively minimal side effects. I do have chronic UTI’s that come usually 1+ time a month that make me take time off work since the pain and side effects are horrendous for those few days.

I’m still on my parents insurance plan, and thankfully they take care of my medical bills. I’ve had this condition since birth, so they kind of just carried that on until this point and I think they probably will continue to until I’m atleast 25 and get kicked off of their insurance.

My concern is in the future when it eventually gets worse and I can’t function normally. I know treatment will be expensive, and I’m not super excited to inherit the crazy medical expenses that I anticipate in the future. I make a decent living now. I skipped college and went straight to work. I live on my own and support myself. I save a decent amount, but I love traveling and enjoying this beautiful planet that we live on. I currently make $80K before taxes. I’m assuming unfortunately this will probably disqualify me from certain programs that lower income people (that rightfully deserve more than I do).

Is there any kind of government assistance or anything that I can plan on in the future? I know eventually I probably won’t be able to work (full time atleast) and the daunting thought of those bills consuming my entire income is frightening. I know employers have FMLA and what not, but I’m curious what is available beyond that later down the line.

My condition and been pretty stable with slight decline over the years. My doctors and myself are pleased and I’m thankful it’s progressing slowly. It’s always a thought on the back burner in my mind though.

My first visit with my nephrologist back in July I was so nervous I just wanted to know WHAT had caused my CKD3 diagnosis and to know what the plan was. I have a follow up in a few weeks and want to come prepared with questions. He’s sort of intimidating and I draw a blank due to nerves. I’ll be having a ton of lab work prior so we’ll be going over that but any questions I could put into my phone to ask at the appointment would be appreciated.

Not diabetic We changed my bp med last visit Cholesterol is okay Not on dialysis No CKD meds No special diets

My grandma has been recently diagnosed with stage 4 kidney disease and is also diabetic. We are having a really hard time trying to find foods that she is able to eat to keep her blood sugar at a normal level on top of avoiding Foods that can worsen her condition. Does anyone have any suggestions? Luckily, she isn't a picky eater! I'm just getting extremely worried for her health. Her doctor didn't have very many suggestions

My son is 15 months old and cysts were first noticed on his kidneys at the 28 week neonatal ultrasound. His most recent MRI shows the cysts have taken over both of his kidneys but they are still working at 100%. They also found small cysts on his liver.

He has tested negative for the PKHD and PKD genes. The doctors are stumped because the cysts are all different sizes, including some very large ones, and they are growing very fast which isn’t normal for ARPKD. So they aren’t diagnosing it as ARPKD or ADPKD despite a lot of similarities. He has polycystic kidneys and liver and has been seen by Stanford Nephrology and no one is sure what he has.

Does anyone have a similar experience?

I’ve been taking Labetalol for 5 years now due to chronic hypertension and being pregnant, having babies and breastfeeding. My Microalb/creat ratio has been steadily increasing and my nephrologist wants me to switch hypertension meds since I’ll be weening my baby soon. I hate the idea of switching medications but I know I must due to proteinuria increasing. My blood pressure has been stable.

My question is what ACE or ARB worked best for your proteinuria, and which one made you feel best? Yes I’m listening to my nephrologist, but also like to hear other’s experiences. TIA!

I’m wondering if anyone is in the same boat as me. I was diagnosed with MCD about 10 years ago and have seen the same nephrologist consistently since then.

I’ve had my ups and downs (relapses and remissions) but overall have received good care and am healthy.

Something that’s been nagging at me though is how there seem to be very few developments, updates, changes in how MCD is treated, diagnosed, etc. I see my nephrologist every 6 months but they don’t share much in terms of new research.

Has anyone else experienced something similar? Any recommendations on what I can do to stay informed?

Hey everyone!

So, I had my left kidney removed when I was 10. I was too young to fully understand what the doctors told me back then, i remember nothing about it, but now I'm 16 and living a totally normal life. I haven’t had any issues with my remaining kidney, and to be honest, I’ve didnt even had it checked for six years now because everything seems fine, nor do i plan to.

I'm just wondering if there are specific things I should avoid to keep my right kidney healthy. Also, I was taking multivitamin capsules ( zinc, vitamin C, contains a little amount of B vitamins ) , but when I looked it up on Google, I saw some stuff about vitamins potentially being harmful for the kidney, and now I'm a bit unsure.

Any tips on what I should or shouldn't do? I have a bad water intake ,sometimes i drink alot of water during the whole day and sometime really less. Thanks in advance!

My family has a gene for hereditary kidney disease, granted I don't know the exact name but my dad has kidney disease and is close to dialysis. My aunt has kidney disease and is on dialysis and my grandma (dad's mom) unfortunately passed away due to kidney disease.

So, my obvious desire is to get tested to see if I have a high chance of inheriting my fathers kidney issues. But, when I spoke to my brother about this he was very strict on the idea that he wouldn't want to know and similarly a couple of my cousins refuse to get tested.

Their reasoning is fair, that if they were to know it would cause them worry & stress. I was just wondering, is there much benefit of catching potential kidney issues earlier?

Hello! Does anybody know when in kidney disease your EPO level drops? Don’t have to be precise but more if it is early or late. I had bloodwork done for other reasons in may and in July where they checked EPO. In may it was 2,7 and in July it was 1,4 and my hb had dropped a bit as well. Reference range seem to be 4-26.

I had no symptoms of anything kidney related then but have started to experience nausea, itching, and pain in my left flank which shoots intensely to my entire body if I put pressure on it.

I have a doctors appointment in a few weeks but was just curious if the low EPO results could have been indicating kidney disease back then already or if that’s something that comes later on.

Hi everyone,

I had bloodwork 2.5 weeks ago that showed an EGFR score of 45. I was told to come back for another blood test today and to make sure I drink plenty of water beforehand, when I asked how much water, the Dr told me as much as possible.

My question is, would drinking lots of water before the test show a falsely inflated EGFR result?

So I get swelling in my feet and can get pretty significant water retention- happens on and off. My PCP thought it was coming from venous insufficiency but a vein doc ruled that out today (small win maybe?). My egfr is 105-113 but I spill a lot of protein (1.5g per day in my 24 hr collection). I am fighting with my insurance to get a biopsy. I was wondering if other people see this issue with diabetic kidney disease at such a high egfr? Or any insights into why this is happening at this stage? (For background, I was diagnosed with diabetes a year ago with A1C of 7.6- no clue how long I had it. I am a 44 year old with family history of diabetes in both parents and mom is esrd. First nephro said I most likely have stage II diabetic kidney disease, while my second opinion doc isn't convinced its from the diabetes- leaning toward FSGS).

My father was acutely hospitalized then found to have ESRD/acute renal failure that has progressed from stage 3B 4 years ago. His docs say his creatinine clearance is 3 mL/min, creatinine is 3.8 and eGFR is 14. However, the nephrologist says the eGFR is not accurate and his kidney failure is worse bc of low muscle mass, age and co-morbidities of diabetes and heart disease. They say survival is 2-4 weeks without dialysis (he declined ). But today, he’s eating and drinking and up walking. Help me make sense of this prognosis? Thank you ❤️

Just wanted to asked if the Medicines theyre using in other countries the same in the Philippines.. I have a very very high uACR +3protien and +1blood in urine GFR is 98, currently on losartan, febuxostat and amlodophine (not sure of the spellings) and will have a 2nd appointment with my nephro next month to see if these goes down..

Want to know from a person with horseshoe kidney if they have a health insurance. If yes, from which insurer?

I’ve applied to multiple insurers while disclosing horseshoe kidney as a pre existing disease and no one is giving to issue a health insurance policy

I’m afraid of living without a health insurance for years to come

Please advise.

34 yr old male, diagnosed with ckd/ IGAnephropathy current gfr is at 30%. Was diagnosed with iga nephropathy last week going to start the tarpeyo steroid for 9 months beginning the next couple weeks and also possibly begin iptacon in the near future. I am a building engineer in NYC and primarily work on all aspects of HVAC systems, I am aware all side effects are different with everyone but im not sure what im getting into with this and would like to have some sort of idea if I should tell my employer

Is anyone with nephrotic syndrome glomerulonephritis taking rituximab IV treatment? My insurance will not cover the cost, and I was wondering if anyone has experienced the same. The treatment has positive results, so I think it is worth paying out of pocket.

I am currently on Zepbound and have lost 60lbs since April. I was hoping the weight loss would lower my BP but I'm still on 3 meds (spironolcatone, nebivolol and olmasartan) to keep it in a reasonable range (I used to be on clonidine as well but was able to get off of it). My eGFR has been in the 20s lately, although sometimes it get up into the 30s. My creatinin is high (2.1MG/DL) and BUN barely above normal 27 (range 7-25). I don't have protein or blood in urine. I have Lupus but I've been told that my ckd is caused by my high BP and not by the lupus and not the other way around. I want to stay on the Zepbound because I don't want to gain the weight back and don't understand what the benefit of that would be anyway. I am thinking of asking my doc to send me to a nutritionist/dietician (they are the same in NYS) which should help concerns that I'm not eating enough or that I'm dehydrated. Is anyone here on Zepbound (or any other GLP-1s)? Does anyone use a nutritionist (who specializes in kidney problems) and is it helpful? Relatable experiences???

Around 10 months ago, I had to be rushed to ER, I had MCD, the way urgent care phrased it made Me think I was going to die (said along the lines of I have a kidney disease that can be bad if I don't get it checked out. I had symptoms since Nov. 2023, but I didn't think it was bad until my mom got me checked out for feet swelling.)

But anyways, back to Prednisone, I hated it, I'm off it now, taking Tacrolimus instead and I'm okay, the MCD is gone.

However there was this time that haunts me, and will continue to do so.

The beginning of March, I was brought down from an 80 MG dose to 40 MG, slowly but still quickly. And because my body was getting better quickly, my nephrologist suggested to do off days, where I didn't take ANYTHING. I think it was 20 for—let's say Tuesday, and I wouldn't take It Wednesday and Friday, but I would for Thursday.

And when I tell you withdrawal, I freaking got one. At 3 am, the day after I didn't take it (so Thursday 3am) I got severe muscle aches. I was literally crying and thought I'd be on my death bed.

And because I am a naive teen, I didn't contact anyone (on my chart or anything) out of "respect" since it was 3 am in the morning... (I was stupid.) However, I was able to fall asleep after 10 minutes and when I woke up, I just had a head ache, and I was very irritable even after taking the meds.

And then Friday I will never forget this day. I was scared I was going to go through the same thing, but no aches... however, when I got to school, I felt like crap. I couldn't get through my first period without crying (because I felt like death) so when I went to the nurse, I explained my med plan, and even they thought it was a bit weird. So They let me rest into the office, but I threw up and had irritable bowls. And my limbs were shaky and stuff

Then, I did contact my nephrologist and she called my parents (I don't have a device to call, only to use for games and apps) and when I got out of the bathroom there was a commotion in the nurses office to dissmis all the students and stuff/lock it down. And that when I found out that they had to call the emergency ambulance (I'm thankful that I have health insurance)

But the funny thing was, they were at work and do you know what my step father said? That I should have told them, and it's unfair to them that they had to leave from work to drive to the ER. (Basically blaming it on me.)

Sure, I should have told them, but they really aren't the best parents to lean on. Haha.

Anyways, I just wanted to rant about my experience through my first withdrawal.

Hi everyone!

Just wondering what everyone’s experiences are with getting tattoos with this disease? Including with dialysis, Fistulas and all that stuff. What kind of advice have you gotten from doctors? Anything in this area would be helpful to know! Thanks!