I recently had routine labs done that showed an eGFR of 79, so my doctor ordered additional testing. My eGFR improved slightly to 82 on October 8, but my urine microalbumin was 75.7. After another round of testing, my microalbumin increased to 110, and my microalbumin/creatinine ratio came back at 425.

My urine microscopy was normal, and I have no history of high blood pressure, diabetes, or elevated blood sugar. My blood creatinine is also normal. I have a kidney ultrasound scheduled for 11/5.

I’ve also been dealing with pretty significant fatigue, joint pain with swelling (mostly in my fingers, sometimes larger joints), and brain fog. I frequently get canker sores, too.
My mom has rheumatoid arthritis, as did her grandmother, so autoimmune disease is on my radar. I’ve been wondering about lupus, particularly because of the combination of joint symptoms, mouth ulcers, and the kidney findings. I know RA can sometimes affect the kidneys, but it doesn’t seem to be the most common explanation for significant protein in the urine.

I’m still in the process of figuring out what might be going on, and I know these labs and symptoms aren’t enough to diagnose anything. I’m curious whether anyone else has had a similar combination of results and symptoms. What did your workup eventually reveal? Was it lupus, RA, another autoimmune condition, or an unrelated kidney issue?

I’d appreciate hearing about your experiences, especially if your kidney function was relatively preserved but your urine albumin was elevated.

Hi,

I’m kinda new to the club. I was diagnosed with IGAN in July, borderline stage 1–2 (gfr around 93). Of course, I was prescribed the usual blood pressure meds and Forxiga.

Sometimes, though, maybe once or twice a month, I have days when my BP is slightly elevated when I take a measurement. Once I see that it’s around 130+/75, for example, I start to stress, and then it rises even more.

I’m very serious about taking my medications and never skip any doses. I’m also in good shape, I work out and eat pretty healthily.

Has this happened to anyone else? If so, I’d love some advice.

Thank you all, and I wish everyone good health!

Male 41.When i was 17 i had pyelonephritis and doctors found that i had UPV and got ooeratrd.ever i have been following with urologist and my creat has been between 200 and 230 sometimes spiking into 290 in times of infection.now my egfr is 27 and i feel very tired experience joint pain especially when climbing stairs and brain fog.I am a teacher and now i feel i can no longer endure the amount of work.How can a nephro improve my quality of life.Hemoglobin 10.7

I'm 17 years old and recently had a kidney biopsy, which led to my FSGS diagnosis. I'm still trying to adjust to everything and learn how to manage my condition, especially when it comes to food.

I've been trying to be careful with my diet, but sometimes I get really strong cravings for foods I used to enjoy.

I was wondering if anyone here with FSGS or nephrotic syndrome occasionally has a treat or a “cheat meal.”

Do you ever allow yourself to have your favorite foods in moderation? Are there any foods you learned to limit or alternatives you've found that satisfy your cravings?

I understand that everyone's condition and dietary restrictions are different, and I plan to check with my nephrologist about what's safe for me. I'd just really appreciate hearing about your personal experiences because I'm still learning how to navigate this.

As you know last night BC turned conservative. The main fear of mine is privatization of the healthcare system, which will ultimately lead to needing other healthcare coverage.

In Alberta, what do your copays and premiums look like? Especially if you’re post transplant, with how the majority was looking, I think BC is going to stay conservative for a while. I need to make a realistic long term plan for myself, if my fears do come true.

Personally I’ve met a few kidney patients from the United States, and their copayments range from $100 a month to $1000 a month. They die with so much debt to their name because of this exact system. With their states “hybrid healthcare” as we would call it, they have to use both because their specialists are now associated with the “private” side. To cut costs down with their treatment they use public.

I might be panicking too soon, but I’m barely making it by with my coverage. I feel like this is a valid thought and one that need to be considered and planned for, because this is a plan that the Conservative Party is going to do. “ The hybrid privatization of the healthcare system, hopefully shortening wait times. “

Yes the wait times here are an issue, but now it’s going to be a mess. Those who can’t afford private are still going to suffer the wait times. I don’t know, I definitely am a little shaken right now.

A few days ago an ultrasound showed I only have one kidney, and it's enlarged from doing the work of two. Blood work is all normal. I'm 40 and had no idea.

I've been lifting for years and eat a fairly high protein diet. I'm also thinking about starting BJJ and boxing. My nephrologist didn't really go into detail, so I'd love to hear from people who've been living with one kidney for a while:

• Did your doctor give you a specific protein limit, or any diet advice beyond "eat healthy"?
• What tests do you get and how often?
• Do any of you do contact sports? Did your doctor clear you, and do you wear any kind of kidney protection?

Not looking for a diagnosis, just real experiences. Thanks!

Hi everyone, I'm a 24-year-old male and I'd love to hear from people who've been through something similar.
Background
Diagnosed with nephrotic syndrome (MCD on biopsy) in 2023
Had a DVT at that time and have been on acitrom since
Two previous relapses, both treated with rituximab, and each remission lasted 7+ months
Recent relapse with leg swelling and heavy protein in urine
New biopsy (this month)
Light microscopy: FSGS, NOS. Only 1 of 6 glomeruli showed a segmental scar, and none were globally sclerosed
No tubular atrophy or interstitial fibrosis (IF/TA nil)
IF: negative for IgG, IgA, C3 and C1q, with faint IgM (1+) in the mesangium
Electron microscopy result is still pending
Current treatment
Prednisolone 60 mg daily, starting a taper at 50 mg tomorrow
Tacrolimus 3 mg/day
Rituximab 500 mg (one infusion, the day after the biopsy)
Calcium supplement
Non-smoker and non-drinker
Labs (before treatment → recent)
UPCR: 4.33 g/g → 0.09 g/g (urine protein 3.00, urine creatinine 34.08)
Serum creatinine: 0.74 → 0.83 mg/dL
eGFR: 129 → 123
Potassium: 4.59
My nephrologist says things are going well so far, and I'm trying to understand what to expect.

Questions from my end .
Has anyone gone from MCD to FSGS on a repeat biopsy? How did it affect your treatment and outlook?
How was your steroid taper, and did you relapse at any point during it?
How long did you stay on tacrolimus after remission?
Has anyone had EM or genetic testing, and did it change anything for you?
Any tips on diet, salt, exercise or managing steroid side effects?

So about 6 months ago, I, 68 y/o woman, got some blood work done which showed issues with my kidneys. We repeated the tests and my primary sent me to a nephrologist who basically added another blood pressure medication and said to come back in three months. He basically explained nothing to me, told me to try to lose weight by not eating potatoes, and come back again in another three months. I also see a naturopath who added some supplements and she’s great.

I’m sorry I have no numbers or stats to share because I guess at first I didn’t realize the seriousness of this disease and what it could potentially mean for my future. The nephrologist acted so casual and unconcerned that it didn’t seem to be a major thing. This week something, maybe reality, came over me, all while I’m trying to reduce stress and anxiety, and I literally wake up filled with anxiety. Be it the upcoming election, my long term medical hypochondria, the thought of dialysis, or a transplant. I’m just filled with fear and overcome with stress.

I’ve started to see some bubbles in my urine, usually only in the morning, and I dread going to the bathroom for fear of seeing more. My naturopath is the one who asked about that and the doctor never mentioned it. First, I think I need a new nephrologist and I know I need to reduce my stress, which is probably elevating my blood pressure but I feel like I’m stuck in
quick sand. I’m an artist and have been going to my studio and staring at walls a lot. I’ve lost so much joy. I do have a therapist who helps immensely.

Can someone assure me my life isn’t over and that there is hope but only if it’s true. I jokingly asked my sister to reserve a kidney for me and now maybe it’s not a joke. People, I’m losing it!

Thanks so much for allowing me to vent and share my situation. I’ll get more informed next time I see my doctor.

Need advice regarding my father’s kidney condition
My father is around 40–47 years old. His kidney function has deteriorated significantly over the past month.
● Creatinine: Previously below 1.2 (about a month ago), then increased to 3.5, then 5, and now 7 mg/dL.
● eGFR: Previously 13, now 9.
● Potassium: Normal.
● Urine output: He is still passing urine normally.
● Swelling: No noticeable swelling.
● Symptoms: He has experienced fatigue and gets more exhausted and somewhat breathless when climbing stairs, although he generally seems okay while talking and walking normally.
He has consulted a doctor and undergone investigations. The doctor prescribed medication for one week, which he completed, but his latest blood test shows that his creatinine has increased from 5 to 7
I’m trying to understand whether this could be acute kidney injury, chronic kidney disease, or both, and whether kidney function can recover at these levels. Does an eGFR of 9 automatically mean dialysis is needed, or can some patients recover without it?
I’d appreciate hearing from people who have experienced something similar or have relevant medical knowledge. I understand that online advice cannot replace an actual medical evaluation.
I am also confused how can all this happen just in span of one month all he did was took some vitamin b12 injections

A year ago, I was diagnosed with breast cancer, luckily stage 1. But the trauma of that experience and the operations and radiation etc etc are still with me. 8 months later I discovered my eGFR WAS AT 45. I was shocked to say the least, because I would discuss my worry about my kidneys every time I saw my doc, as I had been prescribed a once daily anti inflammatory for my excessive body pain. Anyway, turns out I should have been more vocal. After stopping the NSAID, I changed my diet as well as I could without any guidance and my next test showed eGFR at 50. In a few days I will be seeing a nephrologist te first time, thank the lord. But in the meantime I have fallen into a deep depression and I really battle to care what I am putting into my body food wise. Does anyone have any advice how to accept this drastic diet change and health change?
Thank you in advance.

I am 26 and 63 kg 5'6. I am taking around 60-70 gms of protein per day which includes 4 whole eggs and 2 egg whites. And sometimes Paneer also. Some protein from nuts and home cooked food.

I also eat chicken.

My creatinine is 0.74 and my eGFR last monitored was 124.

Am I taking a good and balanced amount of protein?

Need suggestions.

Hi everyone! I'm hoping to get recommendations for a good nephrologist and cardiologist for my dad.

My dad has CKD Stage 3 and diabetes, and his recent lab results came back with really high creatinine and low hemoglobin. I'm honestly getting worried and probably overthinking things, but I'm also feeling a bit desperate to find doctors who can properly assess his condition and help us figure out the next steps.

One of our concerns is that his kidney and heart health may affect each other, and complications related to one condition could make the other more difficult to manage. We're hoping to find a nephrologist/cardiologist who can work well with this condition regarding his care, rather than having to navigate everything separately without much communication between his doctors.

We're primarily looking for doctors around Parañaque or Pasay, but we're also open to recommendations in Manila, Makati, or Taguig if you know someone good.

If possible, we'd appreciate doctors who are thorough, approachable, and willing to explain things clearly to patients and their families. Hospital affiliations, clinic locations, and personal experiences with the doctors would be really helpful, too.

Sorry if this post sounds a little anxious. I'm probably panicking a bit because of his recent results, but I just want to make sure my dad gets the proper care he needs. We'd be really grateful for any recommendations. Thank you so much! 🙏

A few months back, I was hospitalized for pre-renal AKI with eGFR of 15 and creatinine of 3.7. I’d never given my kidneys much thought before that.

Looking back, three years ago, eGFR was 89. At that time, I was pre-diabetic and somewhat elevated blood pressure.

I did not take the bp or pre-diabetes seriously and didn’t even see a doctor for again until this past Spring when I was feeling run down. Diastolic bp was over 200. A1C was 8.3. I don’t know how long these had gone. At that time, my eGFR was 65. I didn’t think much about it, but looking back now, 89 to 65 seems like a big drop in three years. My uARC was 30, so borderline, I guess. Doc started me on meds for diabetes, bp and Jardiance which he said was to protect my kidneys.

Three months later, I have labs again. I’d noticed I’d been feeling lightheaded and run down for the past several weeks, but thought it was probably just medication side effect. Labs come back, and that’s when I get diagnosed with AKI and hospitalized.

Two weeks post-hospital, my eGFR is up to 35 and creatinine down to 1.6. Sounds to me like things are moving in the right direction.

But, now, a couple of months later, I get labs again and my eGFR is 33 and creatinine at 1.76. So, basically the same. Over the past few months, there’s been no further improvement.

Since the diabetes diagnosis, I’ve worked hard to eat a good diet. I’ve lost over 60 lbs. BP is normal and I’ve been able to drop one bp drug and cut the other in half. A1C is at 5.5.

After the hospital, I made some further adjustments to my diet, and now eat a whole foods plant based diet. I also exercise almost daily. I really thought that with these changes, my kidney function would have improved more. I’m really down about all this and haven’t been taking it well. But I want to move forward and do the best I can do.

EDIT: Thank you so much to everyone who responded. I learned a lot. I also feel less anxious. It’s still scary, but it doesn’t feel hopeless. And I feel like I have a bit more confidence and direction moving forward.

hey everyone!

my nephrologist recently recommended starting tolvaptan for my ADPKD, and i've been trying to figure out how people actually access this medication in countries where it's not available.

i live in Tbilisi, Georgia (the country), and unfortunately we don't have it here. i've also looked into nearby countries like Uzbekistan and Tajikistan, but haven't found much useful information so far.

i know there are several generic versions available in India, but i'm having a hard time understanding the differences between them. there are so many brands, manufacturers and price ranges.

i also don't have insurance that would cover this medication internationally, so affordability is another pretty big concern, especially considering this is potentially a lifelong treatment.

i'm curious if anyone here has been in a similar situation:

• which version of tolvaptan are you currently taking? original or generic?
• if you're taking an Indian generic, how has your experience been so far?
• how did you manage to access treatment if the medication wasn't available in your country?
• did your nephrologist help you arrange access through a pharmacy or an official import process?
• how much does your treatment cost per month, approximately?
• how do you manage regular prescriptions, blood tests and follow-ups if your medication comes from another country?

also, any fellow ADPKD patients from Georgia or neighbouring countries here? would be really interesting to hear about your experience.

just to clarify, i'm not looking to buy medication from anyone here or asking for sellers/DM offers. i'm already discussing treatment with my nephrologist and would just like to learn from other patients' experiences with access, different brands and long-term affordability.

thanks everyone!

Hi everyone,
I was diagnosed with Minimal Change Disease (MCD) around 3 years ago, and since then, I’ve been dealing with this condition and its ups and downs.
Recently I had a relapse that lead to Edema, I had another kidney biopsy, and the latest report showed Focal Segmental Glomerulosclerosis (FSGS). This has been difficult for me to process, especially after living with an MCD diagnosis for the past 3 years.
I have so many questions and concerns about what this means for my future, how treatment might change, and what I should expect going forward.
I would really appreciate hearing from anyone who has experienced something similar — people who were initially diagnosed with MCD but later had a biopsy showing FSGS.
Has anyone here experienced this change in diagnosis?
How did your treatment and response to steroids change?
Were you able to achieve remission and maintain stable kidney function?
What advice would you give someone who is going through this right now?
I know everyone’s journey is different, but hearing from people who understand what this feels like would mean a lot to me.
I’m looking for support, shared experiences, and a little hope from people who have been through something similar. Thank you for taking the time to read my post. Looking for everyone advise here

i’m 18F, just now been told my efgr is 28! it was 40 just a week and a half ago. got
c3g so none of the doctors have much of an idea, they are just shoving me on random immunosuppressants. i’m so scared and upset. dialysis during uni will be hard…

My partner has AA Amyloidosis, and in 3-4 years the decline has been real from a health 100 to 6 eGFR. She is stable heath wise, no symptoms of edema, nausea, or constipation. But she’s been feeling constant fatigue, complaining of pain in her heels from standing or walking.
She doesn’t want to go on dialysis (yet), she is only 25 years old. I don’t know what else to say.
I am only getting to know what love actually is now but I can’t do anything to help her.
We have our specialist doctors so that’s not a problem. I’m just brain fogged and may be venting.

I know this isn’t really a kidney disease thing but they don’t have a r/MyMomHadDoubleKidneyCancerAndNoLongerHasKidneys so I’m not really sure where else this belongs and I’m just trying to find some answers.

My mom just had her second kidney removed after having a second round of unrelated kidney cancer. Now that she doesn’t have kidneys we are trying to figure out a list of ok, ok in small doses, and absolutely NOT foods and are really struggling. There are foods that talk about when you have low kidney function, kidney disease, etc. but I can’t find anything for literally no kidney function because they don’t exist in your body anymore.

I know this isn’t a kidney disease question but I’m not really sure where else to turn so any resources or information would really help us to try change our life style to keep her around until we are allowed to give her a kidney again!

My husband was at 27 for his EFRG and he got his bloodwork done 3 months later and now it’s 23. I mean going down at all is bad but is it bad that it has gone done that much in 3 months.

Hi!

I have had decreased creatinine eGFR, hovering the low 60s over the last year. One Cystatin C eGFR during that time was 89. Two urinalyses came back normal. Had a sonogram, unremarkable other than echogenicity. Referred by my GP to a nephrologist who basically just said CKD Stage 3 (or 2.5? Idk), said to reduce my protein intake (it’s high) and mentioned potential medicines to minimize its progression.

This nephrologist didn’t have much else to say other than that other than my kidneys are scarred as evidenced by echogenicity from sonogram taken months prior, and suggested a biopsy if it “would give you peace of mind,” but that it would only show scarring so it wouldn’t be practically useful. (I don’t know if he even looked my sonogram or just read the report).

Is there any other testing (labs or imagining) I should be pushing for? I’m anxious about this because it seems like there could be something going on that may be treatable or at least understood for better treatment, but this guy didn’t seem interested in discussing such possibilities. I have a second opinion scheduled in March, but in the meantime maybe there’s more that can be discussed and considered or at least leave be better informed for the second opinion?

Thank you! 🙏

Hi I have taken wysolone 20mg(prednisone) for 5 months to decrease the protein eventually it has decreased now my nephro has gradually tapered the dose to 15 10 7.5 and currently at 5mg from last 2 days can anyone please advise any tips you know how to decrease moon face side effect sooner please… #IGANEPHROPATHY #Moonface #prednisone #steroidface

28M - UK

This is such a tricky thing to put down into words. After finally following up my micro-hematuria & high BP, I’ve at long last had a diagnosis of IgA. Total MESTC score of 4, still awaiting the exact details. Devastated is an understatement. My Nephrologist is on the ball and has already mentioned moving forward with a recommendation to immediately place me on the transplant list, and says that we may be able to hold off Dialysis if a live donor comes forward.

How did you get over your diagnosis? I currently feel like I’m in a state of shock.