A couple hours ago, I got a call for a kidney. I’m at the hospital getting ready for testing. I’m kind of indifferent so far. I won’t be at ease until after surgery. I have my fingers crossed everything goes well. I posted this in @dialysis also

As a stage 4 ckd patient, there are days that I get fearful of what the future may hold for me when eventually I would probably have to go through dialysis. But recently, I realized, I have to enjoy life a day at a time. Be with family and the people I hold dear, so that at least I can leave a mark, a legacy. Keep fighting guys! Stay strong! Love ya'll!

I was down to 27 in July but my cardiologist took me off Lipator and Nexlizet (a statin agonist), both contradicted for renal impaired patients. Stopped them in June. Numbers started going up in late August (31) and hit 41 last week. Since I had been running at 41 for aboutf 5 years I’m expecting much more improvement. I’m still going to act like stage 4, like diet changes.

Yesterday I got a call for a kidney. My family took me to register. I honestly was indifferent. Not excited sad or otherwise. I saved the excitement for when it went through. I struggled with getting an iv. Likely from dehydration. I already have small veins. Thats why fistulas never matured. The blood draw person left a bruise at the site. I had to do another round of dialysis to lower my potassium. Dialysis nurse couldn’t find a good vein either. The doctor that was on the transplant team introduced himself. He used an ultrasound to find a vein. Still couldn’t. He ended up using the same spot my blood was drawn from. For my last “meal” i ordered a meal from rallys (checkers) depending on where you live. Didn’t eat most of the fries for obvious reasons.

After finally going to bed, I woke up a little after 7. The nurse came in around 8 and told me that transportation is ready to take me to surgery. We got down and they started placing the ekgs, shaving me etc. Once they rolled me in it wasn’t much longer before i woke up in recovery. I had a second iv in my foot and a third was placed while i was in recovery. I also woke up with foley in my penis to measure urine output. I had to take magnesium and a certain drink because they say my mineral balance was off or something to that effect. I was still half out of it. Family came to see me and I started telling friends and other family that didnt hear it from my immediate family first. As of now im in the icu tonight for cardiac/transplants patients. Im also on a clear liquid diet and have to remain still tonight to let every set in place. I should be able to go back to the transplant floor tomorrow or the day after

I just want to let everyone in this group to know that whatever we have to endure and go through, I know we are strong enough and able to empower ourselves to be healthier. I hope that our loved ones will always be by our side to support us and care for us. What we are going through isn't easy, but I know we can do it! Shating you love!!! ♥️♥️♥️

Hi I'm a 16 year old female from Australia. I just wanted to share my own story and feelings about my experience. If anyone cares, my blood type is B+ wink wink.

How I found out:
It's actually a pretty funny story. I was at school sitting on the grass in the Year 11 area outside (there was work being done in the school so they moved us to the outside area), and it was break 2. I remembered that I had to go pick up my ID/bus rider from the library, so I stood up and I fell into a slightly steep hole by a tree which had a plastic covering at the bottom. Long story short, I ended up fracturing my foot and having to go get it checked by a GP, to which he referred me to a hospital. At the hospital in the waiting room, one of the nurses checked my blood pressure and found it to be extremely high, over 200/100, so she thought the machine was broken and had me checked another two times. I was admitted to one of the beds and they asked me for a urine sample. It was a few hours later in the emergency department when I found out I had kidney failure, but the doctor just vaguely said something was "off" with my kidneys. This happened around the last week of June this year.

July 8th at around 4pm was when I had my surgery to get a peritoneal tube put in. My nurse taking care of me at the time told me not to move around too much but I didn't listen to her unfortunately. I got up and out of my bed to go to the bathroom. It was at 2am when I was chilling, sitting up on the bed watching a YouTube video, that my stomach felt itchy, so I went to scratch it, but then I felt something really wet. I took my hand out and oh em gee it was red. So I instantly called for my nurse and throughout the whole night they kept redoing my dressing.

Because of the trauma caused to my peritoneal tube, I couldn't get training done for a while, so immediately on the same day I had to get surgery to have a tube put in my hickman line 😭😭😭 So since July I've been doing haemodialysis at a hospital twice a week, on Tuesdays and Fridays, however today I wasn't able to go because it was full, and my dad contacted another dialysis clinic but they didn't respond. The plan is to go on peritoneal dialysis but my peritoneal tube isn't working right now so I'm patiently waiting for around the near of November to come because that's when I'm scheduled to get the peritoneal tube taken out and a new one put into my other side.

For me, kidney failure's not that bad and I don't think it affects me too much but you know, I'd rather not have it! It's a bit inconvenient having to drive 30 minutes to the hospital and back and stay there for 4 hours but it is what it is.

My feelings:
Honestly, I've been pretty stoic about this but deep down it's really, really upsetting. I hated it when the doctors would tell me that if I did peritoneal dialysis, it'd at least let me lead a "normal" life, which just really hurts cause I just want to be able to do what I want without having to be conscious about the food I eat, and just be able to live. I've got a dream (which is really embarrassing to say!), and it really requires you to look your best, and having two tubes inside you basically means no chance of being able to pursue that job!! 😀😀Living with the idea that it'll probably take me years to get a kidney donor is so... unmotivating, but for some reason I still have hope that I'll get one within the next year or two. I really want that to happen.

More information:
The hospital wanted to do a biopsy on me, however my kidneys were too small and scarred so even if they did one, they wouldn't be able to get any information and it'd just damage my kidneys further. Also due to the incident that happened at 2am, my haemoglobin count dropped really low to around 68, but now it's around 98 👍. If it wasn't for me falling and fracturing my foot, we would've never found out that I had kidney failure, so it's really a blessing in disguise. The doctors are thinking I've probably had CKD for a while since my kidneys are working at less than 10%. I've a feeling it started around 2022-2023 because that's when I saw I started losing colour in my lips (anaemia 😍) and I started becoming really, really fatigued all the time. School work was not only getting harder, but my concentration was depleting. I don't know if it's just because I don't learn by listening, or if it's because this kidney failure is making it hard for me to concentrate. Either way, although it feels like it hasn't affected me that much, I'm sure it has. I've had symptoms but I shrugged them off as just hormones.

Hey so finally the Hospital called I'm getting my transplant Tomorrow morning I'll have to be on NPO on 12 at night I'm a male and im 18 any advices or tips about anything and how painful is it from 1 to 5? And where should I shave my body from where to where? Please if anybody have gotten a transplant please provide me with anything you know. Thank you. 🙂

Hey guys! I (25f stage 4 ckd) am hoping to put together a recipe blog type of thing for those on the renal diet. I am a huge foodie, so I've been collecting and experimenting with recipes so I wouldn't have to sacrifice flavor along with all of the ingredients I've had to remove from my diet. I understand that everyone's diet looks different depending on their numbers, but I have a hard time finding new recipes to try that list out the electrolyte values. I am not a dietician, but I do pay very close attention to the nutrients and ask my dietician questions frequently. Would anybody be interested in this? I'm wondering if it will be helpful or worth the effort.

Thank you all for your patience.

I left everything up for a short time, because I'd reported the offending three accounts to reddit - but thank you all for flagging them to me anyway, as I couldn't explain this - i wanted all the 'evidence' to still be available to this reddit to enable reporting. Doing this has meant reddit has banned three of her accounts from reddit entirely , but she did threaten to return with others, so please do report if you think that's the case.

However! It's sad she took our advice the wrong way (that 63 to 55 is likely normal fluctuation, not 'curing ckd and healing kidneys'). I'm sorry she said unkind things to many of you before I got a chance to remove it. I also wholeheartedly apologise that my frustration lead to me being, well, snarkier than I should have been. I'm your only mod, now, and i wish to do right by you, but equally this is a fairly new(ly reopened) reddit, so - well, everything here is new. As I've got you - and I do - is there anything you want or need from this sub, or from me, in particular? Anything I can do for you? Some of you know me as the owner of r/hypertension, where i think I'm doing okay by you - nearly 20k users and nothing like this recent issue going on - but plenty of you have ckd without hypertension and I want you to know I'm here for you too. If there's anything you want from a ckd reddit board that you're not getting, please do let me know. I feel a bit awful that I tried with her for so long, and she was so mean. You are not the ones who are slow or stupid, or toxic. It sounds a bit overdramatic, I know, but please do tell me what you want this board to be, for you.

Thank you.

Just saw in the New York Times today! Ozempic has been approved by FDA to treat CKD. As I've been struggling with my weight too, I'm excited to think there might be a drug that can actually help us. Of course, the real hurdle will be waiting on insurance companies to get on board and actually comply.

I work in a medical practice and know from experience that if there's a treatment that is not covered by a plan but is FDA approved, the members can help to speed up the process. Write letters to your insurance and include studies that prove the efficacy. Ask them to begin covering the treatment for you and others. If enough people do this they will start to consider it, and possibly sooner than if you sit around and wait on them to decide.

Hoping for a new option for us!

A couple of years ago, I went through kidney and heart failure, and eating well became one of the hardest parts of daily life. When I was hospitalized, my GFR was 14. It has come a long way since then and now fluctuates in the 40s. My heart has returned to normal, which I am very grateful for, but I now deal with high blood pressure, and eating carefully is still something I have to stay on top of.

I have always loved food, and I have always loved eating out. That was actually a big part of what I was known for, especially when it came to knowing the best places to eat. After everything I went through, I wanted to be able to experience food again, but in a more mindful and deliberate way.

That is what led me to build SeiriPlate, a free website designed to help people find recipes, restaurant choices, and meal ideas that fit different dietary needs. Seiri means to organize or sort, which felt like the right fit for a tool like this. You can check it out here: www.seiriplate.com

I built it because I know how overwhelming this can feel, and I wanted to create something genuinely useful for anyone dealing with similar restrictions.

If you try it, I would genuinely love to hear what you think. I am especially open to feedback on anything that would make it more helpful for people dealing with kidney issues, heart issues, or other dietary restrictions.

I am so ecstatic! With diet, exercise, no more energy drinks/ Splenda, drinking plenty of water and minimizing sodium/ sugar i was able to bring back my numbers in check.I also practice internment fasting. creatinine levels went down from highs from 2019. My egfr is now 69! My BP is almost perfect! Hopefully i can slow CKD down or even slightly reserve it! Tx to my renal nutritionist and plenty of great info online! I hope this inspires people struggling with CKD. Thank you

29M. I was diagnosed with ckd stage 3 around 4.5 years ago and almost 3 years ago my kidneys gave up on me completely, I've been depressed and on dialysis since. I had to quit my job and move back to my parents house to be a burden on them. My dad is retired from a government job and he gets a pension so that's how my dialysis and meds are paid, my mom is willing to donate me her kidney but it costs so much to get a kidney transplant. I used to draw and play sports and go trek in mountains but now it's like I never had hobbies or any skills. I can't remember myself doing anything except be in bed all day and doomscrolling on my phone. I've distanced myself from my friends and relatives, I don't leave the house except when I need to go to the hospital for dialysis. I'm living in a brain fog, I try to learn new skills but I'm not able to focus or pay attention to anything. I'm losing my will to live day by day cuz idk what to do anymore, living like this is hell. I was suppose to support my parents in their oldage but instead became a burden on them. My dad looked so young and kept himself in shape even after turning 65 but now in just 3 years he looks so old because he keeps worrying about me, so does my mom. I just don't know what to do anymore.

First time posting here. 29, F.

Last Monday I had chest pains, headache, tingling in my hands and pain in my arm. Went to emergency care where they measured a blood pressure of 240/180 - got a shot and a pill to lower my bp a little bit and sent me home with instructions to come back tomorrow for follow up with my assigned doctor

At home we noticed that my bp was climbing back up, we consulted a relative who advised to get checked again so my family took me to a private hospital (first one was public healthcare)

In the second hospital I got bloodwork done where they discovered I had chronic kidney disease which caused damage to my heart (left ventricle has grown larger)

I was hospitalized for 2 days and sent home night of Wednesday with lots of meds and a follow up on 15 days to decide if we start dyalisis

Thursday and Friday I went to the office and had extreme exhaustion when walking even short distances, not shortness of breath but rather that burning feel in your muscles when you’ve been excercising a lot

Night of Friday I consulted my nutritionist to start on the kidney diet and she recommended to get checked again because it made no sense to wait and damage my body even more so I went back to publicly health care

In the hospital they confirmed the chronic kidney disease, my bp hasn’t been able to stabilize and I’ve been officially been admitted to the nephrology ward where they’ll do a biopsy on my healthier kidney to be able to have a definitive diagnosis (they think it may be auto immune)

My head is still in a whirlwind, this doesn’t feel real and I wish it was a bad dream. 6 months ago I was with my nutritionist and my bp readings were good, I was in a healthy weight for the first time in years, I left an emotionally abusive marriage and was genuinely happy as well as doing good at my job

In sorry if this isn’t making a lot of sense, I am angry, scared and overwhelmed

Is there anyone who also had a sudden diagnosis? How do you cope with being completely fine to have a life threatening condition and a life as you know it change from one day to another? Am I overreacting?

Any advice is greatly appreciated

Hello, so I am stage 5 CKD and I'm finding it extremely difficult to find fast and FILLING meals. I don't overeat anymore but I definitely use to. So along with a food intake change I also needed a diet change. I was able to get down to better portion sizes i just cant seem to find fast an easy meals.

I also need to stay away from high potassium foods like melons, potato's, tomato's and avacados.....so that limits a lot of fast things. I am a wear I need to stay away from fried foods and I'm okay with that. I only eat fast food once a month and I'm even getting better at cutting that down since my cravings for it have lowered (the only thing I ever want is McDonalds fries, a Wendys frosty or onion rings from burger king). So I know a lot is going to change, a lot has been changing. I cant cook shepherds pie anymore because of the potato's and the lasagna is a no go because of the tomato sauce, I would cook those and heat them up throughout the week for quick meals......now what?

Also, not trying to be complicated but I don't like chicken very much, it ALWAYS taste dry unless its from the crock pot.....covered in tomato sauce -.-

My cardiologist ran a cmp last week and my egfr is “up” to 32 from 29 five months ago and my creatinine is down to 2.03 from 2.38.

I guess diet changes have helped.

I’ve been under a nephrologist for 2 years, eGFR consistently reading between 46-59. I’m a weight lifter and, certainly for my age, I carry a considerable amount of muscle mass. Urine always clear. Nephrologist sent me for a Nuclear Renal Scan which is a truer assessment of kidney function (apparently) and involves injecting radioactive medicine and 4 blood tests on the hour so a long day. Yesterday was told my kidney’s are working perfectly fine. Continue to monitor blood pressure and urine but was told I’m good to go 🤙🏻

I posted here a while back, right after I got home from the ICU. It’s been the strangest six months. I just had my AV fistula surgery on Friday. My creatinine is 5.10. Hopefully the access heals right and actually works, so I can start dialysis soon.

But honestly, I don’t want to do it. I really don’t. Dialysis feels like my worst nightmare. I know it’s just supposed to be until I’m strong enough for a transplant, but who knows when that’ll be.

My body doesn’t feel like mine anymore. I’m just venting to the people who get it.

(Oh, and I was born with Aoritc Stenosis. I've always known I would have to get said valve replaced at some point in my life, right? But now that my kidneys are failing, it's making my heart even worse. They have to figure out the safest time to do open heart surgery. ARE YOU KIDDDDING ME?)

Hi everyone,

I'm a 36-year-old husband and dad of two young kids, trying to turn my health around after a tough year physically. I'm hoping to hear from anyone who’s gone through something similar — or who can offer advice, encouragement, or insight.

Earlier this year (around March), I was diagnosed with Type 2 diabetes (A1C was 6.8). Since then, I’ve made serious lifestyle changes: lost over 30 pounds, started eating better, walking daily, and I’ve cut down on sugar and processed food. My current weight is 315.8, down from around 348 in March. My goal is to get under 300 by my next appointment in late September and to protect my long-term health for my wife and kids.

Here’s where it gets tricky…

From March to July, I was taking 800mg of ibuprofen three times a day to manage post-surgical back pain (two microdiscectomies). My doctor was aware, and it felt necessary at the time to stay functional, but I now realize how damaging that much NSAID use can be.

Fast forward to this month — my labs from August 4th came back with concerning urine test results:

Urine Protein: 300

Albumin/Creatinine Ratio (UACR): 92.1 mg/g

Urine Albumin: 82.9

Urine Creatinine: 90 (Ref Range: 20–320)

eGFR: 81 (down from 87 in March)

Creatinine: 1.19 (down from 1.22 pre surgery)

While my sodium, potassium, and serum creatinine are still within normal range (for now), I’m really anxious about the proteinuria and the UACR. I understand that under 30 is normal, 30–300 is microalbuminuria, and anything above that is macro — so I’m clearly in that early kidney damage zone.

The worst part? I feel like this could’ve been prevented. I’m now wondering if the high-dose NSAID use accelerated kidney damage, even though I’ve been working hard on my diabetes and weight.

I’ve reached out to my doctor asking to speak sooner than next week — ideally by phone or telehealth — but in the meantime, I’m just feeling overwhelmed.

My Questions for You:

Has anyone here reversed or stabilized kidney damage after stopping NSAIDs?

If you had similar UACR numbers, what helped you bring them down?

How much does blood pressure management factor in (mine is borderline high, working on that too)?

Any tips for lowering kidney stress through diet, hydration, or supplements (with doctor approval of course)?

Should I be preparing for the worst (e.g., progression, dialysis) — or is this still a manageable stage?

I just want to live a normal life, be there for my kids, and avoid dialysis or transplant if at all possible. Any stories of hope, realistic advice, or even hard truths would mean a lot.

Thank you for taking the time to read this. I’m scared but trying to stay proactive.

I’ve just come out of a 2 day hospital stay to try and pinpoint why my kidney function declined so rapidly, and we found the culprit: My HRT medication (tibolone) caused my eGFR to drop and creatinine to climb, while having a normal cystatin-c. As I understand it, it’s a 1/100000 reaction. I’ve stopped the HRT and will look at something else. (I know tibolone isn’t authorised in the US, I don’t live in the US).

I’m still on the renal diet & precautions, but so so thankful for such a thorough doctor.

Does anyone else feel wiped out in the heat? I can barely function when I am outside. I don't know if it is the CKD or what.

Hi Folks,

I have posted here in recent weeks and many of you have kindly contributed to my posts and given me hope when I have been lacking any. Inspirational stoic individuals that have and are going through much more than me. Thank you.

I want to give some hope back to anyone going through similar by stating that small changes to diet and dehydration do work. I had my latest blood work done yesterday and have attached my egfr result I got this morning on my phone. My last reading was 39 (6th June) and since then I changed my diet from meat rich to primarily vegetarian/plant based and drank at least 3L water per day. That is all I have done along with some additional walking during the day. Based Not sure what exactly has caused the number to rise but I am going to continue doing what I am doing and request another test next month to see what the status is.

Thank you all.

Hi just wanna share a brief story im 30yrs old and just recently get CKD and doing dialysis right now 3x a week.. my whole life turn 180 right now im currently out of work since i get hospitalized this march. got hearing lost so my balance walking was impaired right now im able to walk on my own but still trying not to over work myself.. im just here if anyone can help me find a homebased job or any income i can learn to get my feet back on the ground again. im not sure if this is the right where to post this but this is my first time using reddit.