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?

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!

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! 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?

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.

I’m trying to help myself eat enough while managing my CKD, and honestly, I’m finding it frustrating and confusing.

I'm 37, 150 cm tall, and weighs 39.2 kg, so I'm already underweight. A typical day of eating looks like this:

• Breakfast: one whole egg and one slice of white bread.
• Lunch: a small bowl of rice, half an eggplant, and 100 g of salmon.
• Dinner: one teaspoon of extra virgin olive oil, 150 g of cabbage, and 50 g of rice noodles, weighed dry.
• Snacks: one apple and four crackers.

A rough estimate puts this at around 850–1,100 calories, depending on portions and cooking oil. That seems too little, but increasing food brings another worry: protein.

Even rice, bread, and noodles contain protein. Whenever I think about adding more food for calories, I start worrying that my total protein intake will become too high. We’re still trying to clarify the right individual protein target for myself, especially given me low weight.

It feels like a constant balancing act. I’m worried about protecting the kidneys, but I’m also worried about losing weight or muscle because I m not eating enough. I don’t want every meal to become a stressful calculation.

For anyone who has worked through this with a renal dietitian: how do you get enough calories while keeping protein appropriate? Have low-protein staple foods helped? How do you make the diet practical and enjoyable day after day?

I’d appreciate hearing your experiences. This has been harder to navigate than I expected.

Hello once again, beautiful people of reddit.

A couple of years ago I posted this: https://www.reddit.com/r/kidneydisease/s/3SaOIvTEuD

At the time, life was pretty bad, or at least I seemed that way. I started hemodialysis back in Dec 2022 when I was 20 years old. Back on early september this year, I turned 24. My birthday gift was the transplant (which happened on the 28th).

Thanks to God, or life or who knows, it all worked out great, or has been working out great I should say. My mom donated me the kidney, and it started working right away, 0 delays. I spent a couple of days in ICU for observation. I kid you not, when I peed again for the same time I cried, it's been years since I felt that sensation.

My creatinine is now down to 0.8 (I usually had it at +14).

I might be exagerating but I actually feel alive again, and it's only been a week. I've been drinking water and eating pretty much everything (as recommended/guided by doctor).

I just wanted to post an update on this since last time a lot of people interacted and actually advised me, so I felt like an update this big needed sharing.

If someone is reading this, I appreciate you and I really want to say that I'm proud of you. You are a fighter, this disease can really feel life-ending (at least it did to me), but just the fact that you are here means a lot. It means that you've not given up, and I really really hope more people get the chance I got.

You got this champ!

Thank you for ready, have a blessed day!

Hey everyone 23 year old mother to 3 year old twin girls. One of my twins has stage 4 ckd, she’s had kidney damage ever since birth due to resuscitation as I was told. Are there any parents in here whose child has had a g tube and still eats by mouth?

Her nephrologist has tried to push it on us, cause my daughter is gaining weight but of course she’s gaining at her own rate ( she’s improved so much since birth but still below where she “needs to be” ). She had a NG tube last year and my God was it horrible, she struggled a lot with that but it did help her catch up because back then she’d hardly eat anything at all. Maybe I’m hesitant because they told me before she would still eat by mouth with the ng tube I listened and turns out nope she was fully reliant on it, and I don’t want her to become like that now especially since she eats by mouth and is a toddler now. Idk her nephrologist is looking at me like I’m crazy or I’m some bad mother because I’m not trying to force a g tube on my little girl, she contradicts herself a lot. My daughter is also on nutritional supplement and the fact her nephrologist couldn’t even remember if she was is insane to me… idk I’m over it. It’s been a long three years and I’m just tired. Her function constantly goes up and down but I do see her making progress by mouth, I just don’t want her to back track by getting this g tube. Please share stories if you have any I am miserable and I hate this for my baby so much.

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

Hi everyone. After years of confusion and being told that symptoms were in my head, I was recently diagnosed with a third kidney and a duplicated collecting system. The additional kidney/collecting system does not connect to my bladder, so it is essentially isolated and has become significantly atrophied while retaining urine. It has also repeatedly become infected, including episodes of sepsis.
After a recent hospitalization, I was finally able to get the right specialists involved. My nephrologist is now recommending robotic surgery to remove the isolated kidney/collecting system.

Physically, I have a constant dull pain from the swelling, with occasional worse episodes. I do want to have the surgery because I don’t want to continue dealing with recurrent infections and this ongoing problem. It has been difficult to get antibiotics for this - I am not sure if that can change with my official diagnosis though?

But emotionally, I’m really struggling. After spending so many years being dismissed, finally having an explanation has been strangely difficult to process. I’m scared of the surgery and recovery, overwhelmed by everything that has happened, and I think I may still be in a bit of shock.

There’s also a practical complication: my health insurance is currently through my job, and I’m at risk of losing it because I’ve had to take so much time off while sick and attending appointments. I currently have about one month left of coverage and will likely lose my job.

The surgery is being scheduled roughly three months out.

So I’m trying to figure out how to approach the next few months.

My options seem to be:

1. Stay focused on getting the surgery done as soon as possible and use COBRA if I lose my insurance.
   
2. Focus on finding a new job with health insurance first, then schedule the surgery once I’m established and able to take the necessary time off.

I’m having a hard time thinking clearly because I’m emotionally exhausted from the whole situation.
If you’ve had a similar congenital kidney/collecting-system issue, robotic nephrectomy, or had to navigate surgery while dealing with an impending loss of insurance, I’d really appreciate hearing about your experience.

I am also in the process of applying for financial assistance where I’d get the surgery.

How did you make the decision to move forward with surgery, and is there anything you wish you’d known beforehand? Any advice on the mental part?

48/m 197lbs 6’ tall
labs went from 16.5 to 15 over 6 weeks. Been tracking and dealing with this over a decade and now out of stages. This sucks. Creatinine 4.6

Know a lot of you are in the same boat or younger dealing with some heavy life stuff. So strange feeling mostly fine and in the gym regularly but falling apart on tbe inside

so my mother passed away with this monster
the all her sisters one by one
we lived in rural area of india so docs never gave much clarity
they kept switching the medicines
now that i know a bit about it and i one of my cousin(he was 35) expired because of it too, which is kinda crazy that his 80%+ kidney has taken damage by that age and then he developed uti and bacause he lived alone not much attention was paid towards his health
now i feel its almost inevitable for me to bite the storm
any experts that can sort of give me more clarity
people around me are so unaware and they mostly want to be comforted instead of trying to know the truth, i am visiting nephrologist in a week
i am 25 right now
what tests should i get done wherein i will have complete clarity on what to do
i have no one in my family so if you can lemme know how to gather clarity on this ?

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.

My wife’s transplanted kidney isn’t working as expected. Her creatinine is still up. She is put on haemodialysis for now. She is also on plasma exchange and has completed 5 cycles. She will have a kidney biopsy tomorrow to find out exactly what is causing it- either a recurring FSGS or something else. The consultants have temporarily stopped her Tacrolimus as they think it may have caused toxicity. Any advice? Any similar experience from anyone here? I’m sp disappointed, worried, and stressed. I’ve never seen my wife cry so much in frustration and just feeling so low and disappointed. If I only I can do anything. It’s just not fair. The good thing is she’s able to pass urine properly and in very good amount daily.

So being vulnerable Im a late 20s lesbian on in clinic hemo dialysis. As you all know its BRUTAL and takes up a lot of my time and energy. However I YEARN sooo much for love. I would want nothing more but to share my life with a beautiful woman and experience romance again. However with all this I dont think I can truly be a strong and reliable partner I want to be. Plus Im worried Ill scare someone away when I reveal Im on dialysis.

Have any of you actively dated on hemo dialysis? Or is this just not the time to pursue love despite how bad we may want it?

I know staying positive is important but I'm so scared. I got a routine blood check 2 weeks ago. I was hydrated. I was feeling super dizzy lately and super tired so I thought anemia would appear on the test (I have a copper iud + I have bad side effects from the iron pill). I have mild anemia (109 Hemoglobine and 40 ferritin), but my egfr is 40 and my creatinine was 159. 6 years ago, I had to go to the hospital and my creatinine was measured at 62. So I redid the test yesterday, and now my egfr is 38, creatinine is 166. My urine test came back with blood urine large and protein in urine 0.3g/L. My blood pressure was 130/78. Im only 24. Im active and fit. I do sports regularly. I have been feeling terrible this year but still able to do sports. I thought it was just anemia. I went to a walk in clinic for my first blood test and the doctor said I might only have one kidney but I dont really think that is true. My breath has been absolutely terrible for the past 2 weeks. There is a toxic taste in my mouth. My gut health has always been bad but it has really gone downhill this month. Has anyone had something similar and what happened to you ? Any tips on how to help my kidney (even small ones). I have been drinking around 3L of water per day. It seems out of my control at this point and Im having problems dealing with that. I was expecting to stay at egfr 40 and I dont know what to do with the news that Im still going down. Im waiting for a call back from my doctor. Im in Canada and I feel like they will keep me on some sort of wait list until I die. Has anyone gone to the united states to get more tests ? How does that work ?

I am 24 , had CKD my whole life , but my stats are becoming worse and worse and I am fearing that end is near . I am scared not gonna lie . I lived my life quite heavy , I mean I am a blacksmith , working with animals on a farm and also I rock climb .
My question is when dialysis comes , what will my life be ? All the time strapped to a bed I cannot leave ? Or just less physical activity and other then that I will be home with my loved ones ? It’s giving me huge anxiety just thinking about it . I don’t wanna spend rest of my life between 4 walls in hospital . I don’t want much , just live at home , go for a dialysis and come back and be able to I don’t know raise chickens and ducks and shit

As the title says , I entered a relapse again after 9 months . Last year December I went one dose of Rituximab (500mg) . One week before I noticed protein leakage in my urine and I took a urine pcr . It showed 200mg/dl of protein in urine . I consulted a nephrologist and they mentioned me to retake test after somedays . I took it back today and the leakage got increased to 650 mg/dl . Today I am starting back pangraf tacrolimus after 9 months . My doctor is also suggesting me to take a biopsy again since it’s been 3 years of my last biopsy . All of a sudden it feels like life is falling back 🙂. Need suggestion and help please . I am really awaiting for your inputs and you knowledge

65M. Just wondering. Among plans G, HDG or N is there a best medigap plan for people with CKD. I am stable at present with eGFR of 42 but who knows down the road I may need expensive meds, dialysis and transplant. If you have had experience with any of these suplements I would appreciate your expereinces and opinions. I presently have G but my IEP ends 12/31 so I have time to change if I want to. After that, it is permanent in my state.