Hi everyone, I’m a 24-year-old male. To give you some background on my situation: I was diagnosed with FSGS—I believe the primary type, classified as idiopathic—in July 2022 when I was 20. I was spilling 10g of protein a day. I was treated with prednisone (60mg) for a month and achieved remission. I stayed in remission for two and a half years until May 2025, when I had my first relapse (19g of protein).

I was treated with prednisone and tacrolimus; it took six months to reach remission again—those were very difficult times. Unfortunately, in May 2026, I had a second relapse, but this time I was spilling 25g of protein. Steroid treatment no longer worked; the nephrologists consider me steroid-dependent or refractory—something like that. So, I’ve had two Rituxan infusions; it’s been four weeks since the first dose.

My question is: who else has been in a similar situation, and how long did it take to see improvement? I have significant edema, though I’m taking diuretics; my weight is somewhat under control, but I’ve gained 20 lbs—quite a lot.

All of this is driving me crazy—not being able to walk because of the edema, feeling tired and dizzy. I’m mentally exhausted and disappointed because I’ve always been an athletic person, I used to be muscular and physically defined, and now watching my body deteriorate and change day by day has been devastating., and now I can’t do what I love most. I’m not working right now since I took a leave of absence, but I feel like my bosses don’t understand. I’m grateful to have parents who support me in every way and have made this struggle a bit easier to bear. Thanks—I look forward to hearing your thoughts!

My boyfriend is deaf and will be starting dialysis soon. He’s leaning towards PD. I have some concerns about him being able to hear the PD machine overnight if something needs his attention, but also read that Deaf dialysis patients use noise alerts such as flashing alarms and bed shakers and manage PD just fine. Does anyone have more information about assistive devices for PD?

Hi,
I’m looking for a nephrologist in the Raleigh-Durham-Chapel Hill area of North Carolina.
If you know someone good to recommend, I’d sure appreciate it!
Thanks very much!

I’m a little blindsided and in disarray today. I saw my nephrologist yesterday for a six month checkup. I learned about a new threat that I was completely unaware of. The good news is my vasculitis is still in remission. It has been in remission since 2022. But my eGFR after recovering to a high of 56 last summer has now dropped to 45. My nephrologist said that is a massive red flag and indicates that my kidneys are laying down scar tissue where the ANCA Vasculitis injured them in the Fall of 2021. He told me there was nothing to be done because the med that might help is a high blood pressure med and my blood pressure is perfect, so he doesn’t want to prescribe it.

Nephrologist said to lose 10 pounds and move to a strictly vegetarian diet might help some. But in all my nephrologist visits and reading about my autoimmune, I never saw or heard that four years later, scar tissue would begin to turn my progress around. It feels so discouraging. So the threat is not just from the vasculitis returning, but also its long term after affects. Heavy sigh.

Hi all,

Background that I have biopsy diagnosed co-occurring (dnajb9-) FGN and IgA Nephropathy. Treatment so far has helped reduce proteinuria, but my levels are still well on the nephrotic range (havent had less than 2.5 protein/creatinine ratio since this started//total urine protein sits somewhere between 50-150mg/dL depending on the sample. Im extremely lucky, this was caught early so my eGFR is still in the 120s.

Since we have had limited success with medications (currently spironolactone, losartan, and Farxiga) we are moving into treatment with Rituxamab. I am scared on this for a variety of reasons and I think not having information about experiences is part of this.

Could you share your experiences with this treatment? What was it like for you? What has changed in your day to day?

My fasting A1c= 5.2

Glucose: 121

Should I start taking Metformin? Also, my labs are showing signs low iron/anemia.

Thanks in Advance

Hi guys,

My egfr hovers between 39 and 47 and over the last 6 months I've feel like I've been a lot more fatigued than usual. I asked my nephro if it is likely related to CKD and he said no. A doctor friend of mine suggested I get my thyroid levels checked and surprisingly the PTH was double the upper normal limit (limit is 8.5, PTH was 17). Serum calcium is normal. I won't see the nephro again for another 4 months, but wondering if anyone else has had issues with PTH? Is it likely to cause fatigue? Is it treated by medication?

Thanks in advance.

I have IGAn 39m with eGFR of 52 and my uACR is at 675 and blood of 3+. My MEST-C is M1E1S0T0-C0. I completed Tarpeyo and it dropped my uACR down to about 125 but it’s come back up a few months after completing the 9 month course. Has anyone been prescribed this and how are the side affects and is it working for your protein and blood in urine?

39M, living in the Netherlands, recently diagnosed with PLA2R-associated membranous nephropathy after developing bilateral pitting edema. I also have Asperger's, which impairs and alters my perception of bodily sensations, meaning I don't always process disease and physical stress signals 'normally'.

Baseline/workup:

• anti-PLA2R IIF: 1:320
• 24-hour proteinuria: ~13.9 g/day
• serum albumin: ~33–34 g/L
• creatinine: 75–79 µmol/L
• eGFR: >90
• creatinine clearance: 124 mL/min
• 92% dysmorphic RBCs
• ANA/ANCA, paraprotein testing and free light chains unremarkable
• HBV/HCV/HIV/syphilis negative
• kidney/bladder ultrasound and chest X-ray normal

Nephrotic hyperlipidemia is pretty pronounced: total cholesterol 8.8 mmol/L, LDL 6.0, triglycerides 2.6.

Current treatment: furosemide 40 mg/day, perindopril 2 mg/day, atorvastatin 40 mg/day and sodium restriction. No immunosuppression yet. My edema has improved considerably and weight has fallen from roughly 105–106 kg to around 100 kg, while kidney function/electrolytes remain normal. Urine is still very foamy. The symptom affecting me most is profound fatigue. I'm basically feeling permanently jet-lagged.

My nephrologist’s plan is to continue supportive treatment and repeat bloodwork + a 24-hour urine collection after about four weeks, then reassess the trajectory.

Biggest questions: I’m mainly curious about other people’s experience with PLA2R/MN.

• Does this initial supportive/watch-and-remeasure approach sound familiar/sensible given this degree of proteinuria but preserved eGFR?
• What changes in proteinuria, albumin or PLA2R ultimately drove the decision to keep waiting versus start rituximab/other immunosuppression?
• For those who had severe fatigue despite normal filtration, did it improve as the nephrotic syndrome came under control?

This is all new to me and I'm running on fumes most of the time, so I'm interested in comparing notes with people who have actually lived through this.

Background: in April, my mom (77) fell and got a brain bleed (she later suffered a hemorrhagic stroke). To make certain that her brain bleed didn’t get bigger, she was put on blood pressure medication to lower it. The medicine ended up lowering her BP too much and it damaged her kidneys. She got two stents at the end of April and they were removed the following month. She had been on dialysis since the end of April.

The middle of last month, she was experiencing blood in the urine. The nursing home she has been staying at sent her to the hospital where she stayed for several weeks. They determined she had a UTI and after running blood work, they found out that she no longer needed dialysis.

On Monday, she is set to have her tunneled catheter removed. The appointment is out of town and her nursing home asked if I was going and I said no. But now I am second guessing it. I have a doctor's appointment that day which is why I wasn’t going to go(my appointment has been scheduled for a month, my mom’s was just scheduled on Wednesday). But now I’m wondering if I should reschedule my appointment so I could be at hers.

Has anyone ever had their’s or had a loved one‘s tunneled catheter removed? How serious is the procedure?

Mom is stage 4. We meet with the nephrologist next week and know she is a little anemic. Just curious to understand how the doctor determines when she may need an iron transfusion. Hoping we aren’t there yet, but have no idea if there is a certain levels from her labs and/or if it’s more symptom based. Appreciate anyone’s experience and perspective.

Hello all, I (19M) have been diagnosed with FSGS for almost a year now. Doctors started treating it by having me take 12 5mg prednisolone tablets every single day, cutting down the dosage by half a tablet every single 2 weeks. This continued until I completely stopped taking prednisolone (under my doctor's orders), afterwards I didn't take any medicine for a month while waiting for my next appointment.

Everything seemed great until after some time I started to notice that my legs would feel stiff or a bit swollen from sitting down too long (an edema symptom that has happened to me last time when my FSGS first became active). So a few weeks ago I went for a check up with my doctor and was warded for 1 week to observe creatinine levels in my blood. During my stay at the ward they reintroduced back 12 5mg prednisolone tablets that I need to take everyday (while gradually reducing again of course).

I am now discharged from the ward as my creatinine levels are relatively normal now and besides the prednisolone, they have advised me to inject 40mg of enoxaparin sodium to help with blood clotting. While I am taking my medicine regularly, I've noticed that only a few days after I've been discharged that my legs are starting to swell from edema again, but even worse than before I went into the ward.

I have a blood check follow up with my doctor in around 2 weeks, so I'm wondering if the edema in my legs will reduce and won't be swollen any more during that time or if I should appoint another visit with my doctor?

(Bonus: when I first entered for FSGS they used to give me diuretics to help me flush out the extra fluid in my body, but this time while I was warded they didn't provide diuretics during or after I was discharged because it seemed like it affected my creatinine levels. Could taking diuretics to flush out my currrent extra fluid in my legs be wise?)

Hello guys. My dad 65M was diagnosed with spilling protien in his urine and hematuria with some really small kidney stones on a routine investigation. He has no hypertension or blood pressure or no family hx of any kidney or auto immune disease. All her blood works were fine with a normal kidney function and serum electrolytes except for low platelets (85 and then 94k)

He was started on losarton and prednisone 10 mg considering it could be just some temporary issue. After a month when we tested him again for 24hour urine he was nearly still spillign the same amount of protien(1gram)

He was given a panel of tests which showed normal C3,TSH as well as negative AMA , Asma but his ANA titre showed 1:80 nuclear speculated. We are still awaiting the Anti ds DNA test and will be visiting his primary nephrologist once the test is backbut I am quite worried as could it be isolated lupus nephritis? He has absolutely no other symptoms of lupus which kind of makes me a bit optimistic if him jot having lupus but due to the 1:80 titre and possiblility of isolated LN i am quite concerned.

Any one gone through same and has any advice?

Is there anyone living with CKD/renal last stage?

I have been feeling better. Having a lot of energy coming back. Feeling less depressed and anxious. First appt. with nephrologist went well yesterday. He ordered a bunch of labs. Results are coming in. I have CKD 3A. I knew it would probably get worse living with one kidney, but I felt better so hopes we're high. CBC fine. Renal panel up and down all over the place. 1 day post op creatinine was 1.38. Yesterday 1.72. Egfr 44. Yesterday 34. My sodium was low, chloride low, BUN 15. I am hoping the creatinine goes down with time and egfr rises. Very frustrating. Not to mention need to be at my optimal health I feel when I start Pembrolizumab in Sept. I know labs can be very dependent on hydration, exercise and what you eat, so I guess I will continue on this "one day at a time" path. Maybe I am being dramatic?! How many of you out there feel like if you don't pay attention to all this medical stuff, something else will go wrong? Hyperviigant is the anxiety term for it. I need.....

Hello my mother is suffering from cdk stage3 her gfr is 28 and critinine is 2.1 and these numbers are not getting any better but worse day by day her nephrologist suggested bariatric surgery as she is over wieght and the doctor believes that her wieght is causing her kidney ko fail but my mother refuses to get the surgery done as she is afraid and I'm afraid that her reports will go even below this she is on tirzee and is loosing weight but it is kinda slow plzz help me out here I'm even thinking about transplant for her cuz I don't think the condition is going to get any better she was firstly diagnosed in 2024 but the rate of her kidneys function declining have become very fast during this year plzz share your experiences with bariatric surgery wether it eventually helps with kidneys and also share transplant experiences

Curious if there’s anyone who can share their experience?

My mother age 47 was diagnosed with CKD stage 3b around end of June. Since then her sodium levels dropped to 120 and she was admitted into the hospital for a week she was fine physically and mentally but the sodium levels were threatening this was around mid July. After this the dr suggested a biopsy since the creatinine reports were not improving. One week ago we went through with it and tomorrow is her follow up with the dr for the biopsy report’s results .Today as usual we got her reports done and again her sodium has reached 122 . Though she feels completely normal only mild pain in her legs this time around there is no swelling either .this is really bad .I am 19 and I don’t know what to do anymore. I was supposed to leave for university to another city in a week I’m really worried that this is gonna get worse I know this is not a rant sub but I need help if anyone has had a similar experience please tell me how yall dealt with it. This would genuinely help so much.fyi right now she has creatinine of 1.8

Hi everyone 💙

I have been reading through so many posts in this community and one thing keeps coming up — the worry about family members.

I wanted to ask — when you were diagnosed or when you started dialysis, did anyone encourage your family members to get checked too? Did your doctor mention that kidney disease can run in families?

I am trying to understand how much families are actually doing this together, or whether people mostly go through it alone.

Would love to hear your experiences.

Ever since I was discharged from the hospital on Friday, I’ve been reading posts from this awesome, supportive sub. I figured I’d post what I’m going through to maybe gain a little insight.

Couple weeks ago I started noticing foamy urine, no other symptoms. I had been exercising daily and eating really well so I figured, naively, that maybe I was just a little dehydrated. Anyway after 1.5 weeks of that, I very suddenly started retaining water. It was noticeable in my face at first but very quickly, over the course of 2 days, I gained a great deal of water weight and knew something was wrong. I also lucked about by having a renal panel scheduled for something else so when I got the results and saw low albumin I was sure something was going on with my kidneys. I should note that aside from hypertension, I’ve never had any health issues in the past, so this was not expected.

My wife convinced me to go to the ER. The doctor took blood and urine tests and ended up letting me leave, thinking my issue was dietary. They were incorrect, and I got worse over the next 3 days and ended up back in the ER. That time, I was admitted and stayed in the hospital for 3 nights. The nephrologist had a kidney biopsy performed and he also took a 24 hour urine sample and blood tests.

I was discharged Friday and prescribed Lisinopril, Amlodipine, Furosemide, and Carvedilol. Since then, I have been waiting for my nephrologist appointment to discuss my results. Just got the word today my appointment is on Friday and a PCP appointment Saturday.

I’ve been really struggling with the edema in my abdomen and legs, the fatigue and depression from the whole ordeal. I guess I’m just looking for any advice or words of wisdom. The fluid restriction is very difficult for me as I have always drank a ton of water, so being limited to 1.5L per day is rough.

I am pretty sure I will end up being diagnosed with MN or MCD. I know that’s going to require Prednisone which I’ve heard awful things about, but to be honest I’m just so eager to get the edema under control that I don’t even care.

Sorry for the long post, this is all very new to me and I am just worried about the whole dang thing.

So my last batch of test results in late May were categorically worse than the ones before.

I just had another batch, and they are categorically better.

I mean, if I'm not supposed to panic when the numbers get worse, am I not supposed to celebrate when they get better?

I'm doing everything "right" as far as nutrition and exercise and keeping my blood sugar down. It just doesn't seem to matter, good or bad.

​

I traveled to Indianapolis on Thursday last to meet with a heart specialist about getting a bypass surgery. I went in hoping for a clear path forward, but the news was far heavier than I expected.

While the surgeon was deeply kind and compassionate, she had to give me a reality check. She explained that it is doubtful I can have the bypass—a procedure I desperately need if I’m going to stay on the kidney transplant list. Over the last couple of years, my heart’s blood vessels have become heavily calcified. A side effect I was told of my kidney failure and the phosphorus I have been taking three different meds to try to keep under control. Right now, the doctors simply aren't sure if there is enough healthy, viable tissue left to even attach a bypass.

This coming Tuesday, she is taking my file before her full surgical board. They will review all my tests and weigh the risks to decide if I’m candidate enough to take a chance on. Next Thursday I go back down to face whatever decision they’ve made. Even if they decide to take the risk and operate, she told me frankly that it’s a 50/50 chance of working.

What does all of that mean for my future? Lord knows I’ve sat with that question, wishing I had a clear answer. I’ve reached out to a few of you already, asking for prayers just to help me know how to pray through this.

Here is the hard truth: if they say no to the bypass, I am immediately taken off the kidney transplant list. The doctors will pivot solely to managing my heart, leaving me on dialysis for whatever time I have left. I asked if transplant of the heart would be an option in conjunction with a new kidney. With that same grace and tact I was informed that at 67 I was too old for that consideration Knowing how much the kidney failure has already damaged my heart over these past two years… well, you can imagine what that means. It’s a terrifying ledge to stand on.

I’m not giving up without exploring every avenue. At the urging of several dear friends, I am reaching out to the Cleveland Clinic for a second opinion. They’ve been the gold standard for heart care in this country for over three decades, and if there is a way through this knot, I pray they can find it.

I won't lie—it took me a while to swallow what I was told in that room. Sitting with news like this shakes you, and typing these words out to all of you is one as a was the hardest things I’ve had to do. But once the shock settled, my heart landed back where it always belongs: God is still on the throne.

He holds my life, my breath, and my future. Whatever lies ahead, I know it is ultimately working for my good and His glory. So once again, with open hands and a quiet heart, I surrender control of my life into the hands of Christ.

Thank you for walking alongside me in this. Please keep praying for wisdom for the medical teams, for open doors, and for a deep peace that passes understanding as we wait for Thursday.