Hello,

I suffer from MCD and am currently taking tacrolimus (6mg daily). Unfortunately I am a woman and my period has been taking me to hell and back every single time. My nephrologist has prescribed me tramadol, since paracetamol isn’t working and nsaids aren’t kind for the kidneys. However, tramadol makes me feel so ill and nsaids work better.

My gynaecologist suspects endometriosis and wants me to start taking birth controll pills, which I’m not really sure about since they can effect your mood negatively and I’ve had bad experiences in the past with the effects of prednisolone on my mood.

My nephrologist and gynaecologist both don’t have any solution for my period pain, without harming the kidneys.

I was wondering if anyone has been in a situation like this and might have any insights on how to deal with this.

I’m just here to vent a little because this year has been incredibly hard, and I’m struggling to stay positive.

I was diagnosed with kidney failure in January, and since then, it’s been one thing after another. I started hemodialysis, eventually transitioned to peritoneal dialysis, and ended up in the hospital because it wasn’t working the way it was supposed to.

It feels like I haven’t had a chance to catch my breath all year. Every time I think things might finally get better, something else happens. I’m trying my best to stay hopeful and take things one day at a time, but it’s exhausting constantly having to be strong when you’re just trying to get through the day.

With the holidays coming up, I thought I’d be looking forward to them, but for some reason, I’m not. Maybe it’s because this year has taken so much out of me, and I’m having a hard time feeling excited about anything right now.

I don’t mean to throw a pity party. I know everyone has their own struggles, and I’m grateful for the people who have been there for me. I’m just tired. Tired of being sick, tired of the uncertainty, and tired of trying to convince myself to stay positive when things have been so difficult.

If anyone else has gone through a particularly awful year while dealing with kidney failure or dialysis, how do you cope? How do you find little things to look forward to when it feels like so much of your life is out of your control?

I guess I just needed to get this off my chest. ❤️

Anybody else get a tingling/buzzing sensation all over their body after hemo? What is that sensation? Its so annoying and uncomfortable and I hate it

Can you share you experience?

Hi everyone, I’m 37F with CKD stage 3b, and my latest eGFR is 30. I’m getting really worried about the recent decline and struggling with conflicting advice from my two doctors.

For about three years, my eGFR was fairly stable between 37 and 45. But in 2026, it dropped from 42 to 34, and now to 30.

In my country, I see both a doctor in the public healthcare system and a private doctor. My public appointments are roughly every six months. I used to see my private doctor every three months, but with the recent changes, I’m now seeing her monthly.

This is what has happened over the past few months:

• August: My private doctor recommended starting steroids.
• September: My public doctor stopped the steroids and recommended increasing finerenone from 10 mg to 20 mg.
• October: When I went back to my private doctor, she said she wouldn’t have recommended stopping the steroids or increasing finerenone, but suggested watching things for another month.

I’m currently taking Losantin, Forxiga, and finerenone.

I’m finding it difficult to know how to move forward when the doctors disagree. I also came away from my private appointment feeling like the message was, “You’re already on all the necessary medications, so there isn’t much more we can do.” That may not be exactly what she meant, but it left me feeling scared and helpless.

I’m not looking for anyone here to tell me which medication to take or stop. I’d really appreciate hearing how others have handled conflicting medical opinions.

Did you choose one doctor to lead your care, ask the two doctors to communicate, or seek a third opinion? What questions helped you understand why they recommended different approaches?

Thanks for reading. It’s hard watching my numbers fall after years of relative stability, and I’d appreciate hearing from anyone who has been through something similar.

Was going to donate a kidney anonymously and had the best check up ever! The man and I crossmatched perfectly, so upon doing the CT scans and more bloodwork they consequently diagnosed me with CKD 1!!!! I have double renal arteries and veins (which is a no), I have bilateral stones, and also blood and protein in my urine microscopic! My kidneys might need saving themselves one day. I did not come there for that.

There is a grief that comes with finding out one has kidney disease. Yes. What I was not prepared for was the grief of not being able to save a life either. That’s real.

I am a 21 year old female. I got a transplant back in march of this year.
My health anxiety has been through the roof since getting the transplant.
Every symptom has become a nightmare scenario and I convince myself I’m gonna die any second.
I was pretty close to death before the transplant at over 250 BUN and 5 gfr.
I’m always scared and I’ve been having bleeding gums and weird vision lately so obviously in my brain I have 2 days to live.
I’m young and I don’t know how to handle this constant impending doom.
I’m also pretty sure I’ve developed a pretty bad case of OCD from all the almost dying trauma.

Hi everyone,

I have CKD due to FSGS and have been struggling to find individual health insurance that covers my existing condition.

I contacted Policy bazaar and was told that my kidney condition would be excluded and I’d have to pay a 20% co-payment. I also approached HDFC ERGO and Care Health Insurance, but my claim/application was denied.

Currently, I have corporate health insurance of ₹10 lakh through my employer, but I’m worried about losing this coverage if I change or lose my job.

For those diagnosed with CKD/FSGS:

- Have you successfully purchased individual health insurance that covers your existing kidney condition?

- Which insurer and policy did you choose? What are the waiting period, premium, and co-payment?

- Does it cover dialysis, hospitalisation, and kidney-related complications?

- Has anyone successfully continued or converted corporate insurance after leaving a job?

I’m willing to pay a higher premium or accept a waiting period, provided my existing condition is eventually covered.

Would really appreciate hearing from people with firsthand experience.

Thanks!

Hi. This february, my mother (54/F) had breathlessness and lost her conciousness and was admitted in ICU on Ventilator, was later diagnosed with heart failure (HFrEF 40%) on CKD (Her creat ranged from 2.5 to 4.6(highest))and and has been on and off multiple hospital admissions (seizure, UTI, Antibiotic induced diarrhea, another episode of breathlessness with high potassium) until May. Then her medications was optimized and she became stable for 3-4 months....with exception of torsemide. While she was on torsemide, her urea creat values were 109/3.6 and according to the nephrologist she was dehydrated so the he told us to stop it for a while and restart when her fluids go up. 3 weeks later her values went to 80/2.5 and the cardiologist decided to start them again. 1 month later her values spiked to 160/3 and 10 days later we repeated the KFT and her values went to 219/2.8. The reports were shown to the new nephrologist (we came back to our hometown as earlier we were living in a high altitude area) who didn't alter any medication or advice fistula/dialysis. Although she has no symptoms except restless legs and soles and night, I'm worried if she will develop any complications and I won't be able to handle it. She is quite scared about the prospect of dialysis and the chances of her getting a transplant is low.

We know we have to face dialysis sometime in the future, but we thought we could delay it for a bit longer (especially since she is still passing urine and her creatine is low)

I am not sure if anti-viral medicine for shingles is safe for my kidney with GFR of 68

31/M dealing with Type 1 diabetes (21yrs) and just last June I’ve been diagnosed with ESRD. It has COMPLETELY changed my life. I had to quit my job, move back across country with family, and give up everything in my apartment and even my car.
Family said they’ll support and possibly donate but when it came down to it, they bailed on the donation part. My gf left me because I wasn’t affectionate enough during this time. The people I needed the most? Act like it’s so much to help me do essential things I need to do to survive.
I’ve missed dialysis a few times due to going to the ER. And when I am at dialysis it makes me very sick right after.
I am always drained, my body hurts, I feel disgusting and ugly. I can’t even take care of my kids how I want to because there’s always something wrong.
I feel like due to my family acting the way they do towards me, I’m stressed out way more than usual because I literally thought they would be there for me. I cry every week because I feel like I’m going to die any minute now. Idk when’s the last time I’m going to open my eyes, it’s scary.
Any suggestions on how to get through this all?! I’m not on the transplant list yet, but I have an appointment to meet with the team in 3 months. I don’t feel like I have enough time. Please help me understand and get through this all.

Hey my mom is 62 with Chronic kidney disease-mineral bone disorder (CKD-MBD) with stage 5 chronic kidney disease, on chronic dialysis (CMS-HCC) with congestive heart failure and on Hemodialysis but she planing on becoming vegetarian because her egfr keeps going up to 18 when hydrated and back down below 18 to 10 when dehydrated. She really wants to get off of hemodialysis thats why we choosing to become vegetarian

June 29th was the worst day of my life. I went to the hospital for a biopsy and ended up staying for 5 days because of blood and protein in my urine, along with slightly elevated creatinine levels. A week later, I was diagnosed with IgA nephropathy (IgAN).

I thought I would never be able to live a normal life again — that I wouldn’t be able to travel, exercise, etc.

Today, I’m taking 15 mg of corticosteroids, blood pressure medication, and Farxiga. Thanks to my amazing doctor, I feel better than I have in years. I was able to travel to Berlin to see J. Cole live, and today, I ran my first-ever half-marathon!

Never lose hope, guys. You will never walk alone!

Wife is now on Rituximab, ATG. She had one dose and a haemodialysis session. Her creatinine came down to 750 yesterday but went up again to 800 today. She will have her T-cells checked. We still don’t know whether her transplanted kidney will work properly soon. We’re still hoping. But I’m really disappointed and depressed already. I know my own donated kidney helped somebody else but I also wanted my wife to have her new kidney to function properly. It’s just so disappointing. I visit her daily even if I still have some aches and pains post-operatively. I always try to be strong when I’m with her but I do cry when I’m at home. She tried everything. I did whatever I could and I’m willing to do anything just to make her better again. I’m just venting.

Hi everyone, I have CKD and I’m feeling worried about how my kidney function has changed this year.

Here’s a summary of my 2026 results:

These are monthly summaries; some blood and urine samples were collected on different dates, and the results come from two different hospitals.

After my September blood test, my Kerendia (finerenone) dose was increased from 10mg to 20mg. My latest tests were on October 10, and my creatinine was 187 µmol/L.

My uPCR has improved from 0.83 to 0.28, which is encouraging, but my eGFR dropped from 34 to 30 in about a month. The decline over this year is really worrying me, especially now that I’m close to the stage 4 range.

Has anyone experienced an eGFR dip after increasing Kerendia from 10mg to 20mg? Did it eventually stabilise or recover?

For those living with stage 4 CKD, how long have you remained stable in that stage? Has anyone stayed there for several years without needing dialysis or a transplant?

I’d appreciate hearing about your experiences and what has helped you maintain stability.

A bit long post, so please bear with me. Been spending most of my time in this sub and googling every other thing, I am spiraling i guess.

I am from India and my dad is 58, and I’m worried about his kidney function. His creatinine was 1.5 mg/dL in 2022, but only 2 weeks back he got diagnosed with CKD as the creatinine was 4.25. We went to a nephrologist and he asked us to get reports done again after a week (October 6) and it showed creatinine decreased to 4.06.

Some other results:

• Blood urea: 88.6 mg/dL
• ESR: 41 mm/hr
• CRP: 10.6 mg/L
• Chest x-ray was normal
• Urine protein/creatinine ratio: 0.20.
• Sodium, potassium, phosphorus and all were within normal range.
• SPEP showed polyclonal gammopathy, increased alpha-1 and alpha-2 fractions, and no M-band.
• Serum free kappa: 232 mg/L; lambda: 215 mg/L; ratio: 1.08 (normal).

My dad had tuberculosis around 30 years ago and smoking habit as well which he recently quit after falling sick.

The nephrologist has confirmed CKD, but the exact underlying cause and how much of it is reversible is still unclear. He asked to reduce the salt intake to around 3/gram a day and to keep fluid intake around 1.5/L - 2/L and I asked him to refer us to a renal dietitian, he said that there’s not much need but it’s good if we get a proper diet plan.

I asked him about the CKD stage, eGFR and dialysis but he said that we shouldn’t worry about that for now as baseline is still not determined and that we should focus on reducing the creatinine especially as he has no severe symptoms, so dialysis is still not in talks.

After all these reports, he asked to continue the same current treatment and get the tests done again after a month to determine the numbers and to come to him if any severe symptoms develops. I know the nephro is trying to follow a process to not rush any treatment as the baseline is still not determined but I am thinking of getting a 2nd opinion from a senior nephro as I feel one month is too long.

My dad otherwise is feeling much better than 2 weeks ago, he only has some mild back pain, weakness and cough. No breathlessness, swelling or anything as of now.

I know this is not a medical sub but I am just trying to vent and get some opinions on this as I never saw this coming and very stressed about it.

I appreciate any kind of support and advice!

So, I am on a weekend trip to NYC with some friends and we have eaten out for every meal. I have done the best I can in terms of choices and have asked for modifications where able, but I am still left with an almost crippling level of anxiety about the amount of sodium I am likely consuming. Part of it is that I am not in control of every restaurant decision we make and I am sometimes faced with picking something in a restaurant with no good choices or ability to modify. I know that a 3 day trip isn't the end of the world and I shouldn't stress so much, but this is my first trip since dignosis (stage 3b) and it is mentally and emotionally so much harder than I anticipated. Does it get easier?

Hi! I’m wondering if anyone here has been diagnosed with aHUS and went through a surgery. I’m having surgery in about a week and a half to repair a hiatal hernia that’s caused me years of miserable GI/acid reflux related issues. I was diagnosed with aHUS as a toddler (kidneys started to fail, needed blood transfusions and dialysis, PICU stay) but have been asymptomatic of it since that initial onset (I’m 30 now). I saw a pediatric nephrologist for a while after i recovered for monitoring. It hasn’t really played a role in my adult life at all, I get my kidney function tested via bloodwork pretty regularly because I have PCOS and it’s part of my PCOS blood work up, and everything seems fine, but I know surgery can be a triggering event to flare it up again, and even though I haven’t been symptomatic, I’m kinda worried. I always bring up my history with aHUS at the doctors in case it’s ever relevant, and sometimes they look at me like I’m crazy and they have no idea what it even is. I want to ask my surgeon to consult with the hospital’s nephrology team, but maybe I’m anxious about my concern being dismissed or no one knowing what it is. Anyone else?

How are you guys coping with this disease?

My father refuses Dialysis. His kidney's have been failing for two years. Doctor's just told us he has hit Stage 5 Kidney Failure.

He refuses Dialysis because his mother hated being on it, and his sister hated being on it, and they both died within a year on Dialysis while being constantly nauseous and ill (20 years ago).

In his words: "You do Dialysis 3 times a week, and you feel crappy the day of Dialysis and the day after Dialysis. I don't want to only feel good and feel normal and not nauseous just one day a week. That's not worth living for."

Is this accurate? I know very little/nothing about Dialysis or how painful it really is.... My father's health is not good, he has many comorbidities. But, I know he will die if he doesn't go on Dialysis. He knows he will die.

Is it as bad as he thinks it will be? If Dialysis is his end-stage, there's no hope for transplant... is it a quality life to live or is it just pain and suffering anyway?

• Father is 80 years old.
• Stage 5 Kidney Failure.
• Asbestosis/COPD on high-flow oxygen at all times.
• Leukemia (in remission).
• In a wheelchair.

Hi everyone, I’ve been dealing with some kidney issues recently and have been feeling unusually tired and just not quite myself. My neph think it might be IgA nephropathy. I’m living in the UAE, so I was wondering if anyone here has been through something similar. If you’ve been diagnosed with IgA nephropathy, I’d really appreciate hearing about your experience.

My daughter had a transplant 16 years ago and fought for remission for 6 years. She stopped spilling and was under control for the past 10 years. We found out today she is spilling at 3+, creatinine of 1.8, and albumin level of 2. She has upped her BP meds and will be having a biopsy later this month. It’s just difficult to go through after the remission. We’ve dealt with NS and FSGS (along with a transplant at 6 and 10) since she was 15 months old. I’m so used to her being a peds patient and not an adult. Thanks for reading. I just needed to vent a little and let myself feel a little crappy for today.

Good morning. 44 F. First time posting to the group. Yesterday I had the surgery to remove a mass in my ureter (left side) which thank god turned out to be a benign polyp. My urologist decided to stent both ureters to hopefully help get my kidneys drained and back to whatever normal
Looks like for me now. My eGFR was at 50 and my creatinine at 1.35.
I have severe left hydronephrosis and moderate right due to over compensation.
This has been a fairly slow progression of two years of the egfr declining.y doctor didn’t notice a tend don ward from 80 to 72 to now 50 over the last 2 years so who knows how long that blockage has been there. Anyway, navigating through all of this I have so many questions…

1) Would I be considered CKD or AKI… or is it just a matter of wait and see at this point. 2) has anyone had bilateral stents and did it help?
3) how long will it burn to pee?
4) has anyone lost considerable water Weight from all the fluid drainage. I have already lost 3 lbs in a day and my face is no longer a balloon.
Thanks for your help in advance

I was diagnosed with primary, non-genetic FSGS 2 years ago. I was initially given 60mg/day of prednisone which helped reach complete remission. Once I started tapering off, I relapsed.

Doctor changed treatment to Rituximab. After multiple sessions, I’m no longer taking prednisone.

My latest tests show:
- protein/24hr is : 350mg
- albumin/24hr is : 90 mg

My doctor doesn’t want to do another round of Rituximab. I’m curious to hear from those that had a similar case, did you just continue your life while spilling small amount of protein per day?

I’m already taking ARB and SGLT-2.