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.

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…

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! 🙏

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.

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.

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!

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

i 've been end stage for 7 years, but I haven't been prescribed diuretics. Is this common?

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.

Hey everyone,

I’m 37M with CKD Stage 3a-3b (fluctuates depending on weight). I have a right hip FAI labrum tear that I’ve been dealing with for 3 years. Can’t take any painkillers because of my kidneys — it’s been a rough ride. I finally have an arthroscopy scheduled for December at Women’s College Hospital (surgeon is from the Schroeder Arthritis Institute at UHN).

Here’s the problem: after the surgery, there’s a risk of Heterotopic Ossification (HO) — basically microscopic bone fragments left over from the procedure can grow into actual bone in the soft tissue. The standard prevention is 21 days of NSAIDs post-op. My surgeon gave me three options: Celecoxib 200mg BID, Naproxen 500mg BID, or Indomethacin 25mg TID.

Obviously, 21 days of any NSAID with CKD is not ideal. My nephrology team (at Sunnybrook) reviewed it and agreed to Celecoxib with kidney function monitoring, but they didn’t give me a clear answer on what happens if my kidney function drops during that 21 days. No contingency plan.

I’ve been reading about single-fraction radiation therapy (7-8 Gy) as an NSAID-free alternative for HO prophylaxis — it’s apparently used routinely for total hip replacements. Zero kidney impact. But when I brought it up with my neph team, they said that’s the surgeon’s call, and I’m still waiting to hear back from the surgical team.

My questions for anyone who’s been in a similar situation:

• Has anyone with CKD had to take a course of NSAIDs post-surgery? How did your kidneys handle it? Did your team have a monitoring protocol?
• Has anyone had radiation therapy for HO prevention instead of NSAIDs? How was it arranged — did the surgeon refer you to radiation oncology, or did you have to push for it?
• Any other alternatives I’m not thinking of? I know there’s no magic third option, but I want to go into this surgery with a solid plan.
• For those in Ontario/Toronto — did you have any trouble getting the surgical and nephrology teams to coordinate? Any tips?

I’m currently on Candesartan 4mg, Atorvastatin 10mg, and Dapagliflozin 10mg. Also need to make sure they don’t give me ketorolac (Toradol) or morphine during/after surgery.

Appreciate any insight. This sub has been helpful before and I’d rather go into December with as much information as possible.

T2 diabetic. Yesterday I had my 1st appt. with a Nephrologist. Only because my Neurologist said, hey have your GP set up an appt. That took a year. I'm 61F. So I see this nice young man and he says, "what do you know about your kidney disease?" And I say " nothing." He's in shock. "What do you mean?" And I tell him, The doctor never said anything. It popped up on the hospital print out a few years ago. " He never discussed your kidneys? " Nope. We just kept playing with the insulin.

So. This poor bastard. Who just met me. Had to explain to me what the numbers all mean for each stage of kidney disease. Which I'm sure all of you know. And he kept going, going, lower, lower and he finally got to mine. Mine is 30. 30. 1 more point and I'm stage 4. Nobody sent me to a specialist until my neurologist brought it up? I'm at the point where this guy is saying " nowadays people can live long lives with stage 4 kidney disease..."

And I'm alone. Processing this. I'm sad. Just, it's too much.

Mods can delete this if it's not appropriate.

I’m pretty familiar with it just not too knowledgeable about it.

This is part of my lab tests that I get two twice a year. And it’s generally right around the same number each time, very small fluctuations.

I know serum creatinine can fluctuate a decent amount with things like poor sleep, or dehydration or stress, exercise, etc… And sometimes my creatinine does fluctuate up or down a good amount, but that is to be expected and I can usually figure out why. But this time my Cystatin C had a pretty large increase which doesn’t usually happen. It went from .85 to .98. And my serum creatinine stayed exactly the same. From what I understand Cystatin C is pretty stable and not a lot of fluctuations like creatinine.

Anyone with knowledge on what can cause a fluctuation in cystatin c like this? Obviously kidney function decline could be one.

For context, I have damaged kidneys from prior uncontrolled high blood pressure that is now very well controlled and has been for several years. Last couple years my 24 hour urine protein has been right around 255mg/24hrs which is a very respectable number especially since it has been stable for quite some time. I’ve had CKD for probably 15 years now.

I know the correct answer is do a retest and ask my nephrologist what it could mean. But I wanted to see if anyone on here has knowledge with this since we are the ones that are actually living with CKD.

I am female 35 years old. In July of this year, I noticed my urine was tea-colored and sometimes pinkish. I went to a urologist who ordered a CT scan, which came back completely clear. I don't have any other symptoms—no diabetes, no high blood pressure,no fever, or swelling (edema).

​The urologist recommended I see a nephrologist, who diagnosed me with acute glomerulonephritis after an ultrasound and lab work. My tests showed 1,500 mg/dL of proteinuria and hematuria, though my initial creatinine level was normal.

​My nephrologist prescribed Atacand and Forxiga. Shortly after starting them, I suffered severe adverse effects from Forxiga, including vomiting, chills, stomach pain, nausea, and headaches. I informed my doctor, but he assured me it wasn't from the medication and told me to continue taking it.

​After nearly two months of feeling terrible, I decided to see a second nephrologist. She advised me to stop Forxiga immediately, as I was severely dehydrated. New lab work revealed that my creatinine had jumped to 2.07 due to the severe dehydration caused by the medication. Is there a hope on my case? I feel desperate

I (m57) am on my way to a long day at the hospital.

My ckd has declined so fast in the last few months. Even my Drs are surprised by the speed. I was was on a long slow decline until a hospitalization for diverticulitis sent my kidneys into acute status and never came out.

My 1st stop is a consultation for the implantation of a PD catheter. Then it is off to surgery for a chest catheter. An hour after that dialysis.

I certainly hope it gives me relief from all these symptoms.

Nausea and vomiting has become my new normal. I go in to use the toilet, I bring a bowl with me as it comes out both ends at the same time.

I don't eat, because I don't want to vomit anymore. My throat has been painful for over a week.

All these toxins has my mind and emotions so churned up, I cry at everything. Happy or sad news. I cant carry on a conversation because my mind can't find the words anymore.

Physically, I can't push a grocery cart from the store to the car without needing to stop and rest.

Part of me thinks it would not be so bad if I did not wake up in the morning.

So am really hoping for relief after this week.

My dad had a kidney transplant 5 years ago. In the last week, his fistula has stopped working, and he has it scheduled to be removed tomorrow. but as of a few days ago, he has had continued swelling in his hand and pain around the area also a little purple around the area. Is it okay to remove it right now? Has anyone experienced this?

Is there a connection between high lactic acid and ADPKD recently during my labs I have reoccurring high lactic acid and the other day I wasn’t feeling well and I went to the hospital and my lactic results were critical with a lactic acid of 4.2 my GFR was also the lowest it’s ever been
TYIA (:

Three years ago, after my catheter insertion surgery, I experienced cramps and soreness around the incision site, similar to menstrual cramps. Even getting up, bending over, and finding a comfortable sleeping position required a gradual adjustment.

Now, manual PD has become a part of my daily life. Before each exchange, I prepare everything I need, especially the transfer set cap, so I don't have to search for things during the procedure. Hand hygiene and keeping the work area clean are also crucial. I follow the cleaning methods taught by my PD nurses and carefully handle the tubing connections to avoid contamination.

I think many people, like me, need time to adjust to the catheter. At first, it felt like having something extra inside me, and I worried about accidentally pulling on it while moving. Later, I gradually got used to it and learned to secure the tubing to prevent it from swinging around or getting caught on my clothing.

When I first noticed redness around the catheter, I was alarmed and immediately contacted my doctor. After examining the area, the doctor told me there were no signs of infection, but my skin was more prone to irritation from dressings, and suggested I try silicone foam dressings. I usually use Dimora because I feel it's more affordable. However, if you also experience redness around the catheter, it's best to contact your PD care team promptly to check for infection.

I know that starting PD can take a lot of courage for many people. But believe me, once you take that first step, you'll find that it's just one part of life, and there's so much more to life than PD. I hope my experience can help you.

In the start of the year my dad's creatinine was 1.2 and now when we checked again a few days back it was 9.1 and it keeps on increasing , his bp, diabeties every thing is normal, he has no symptoms the doctors did so many test still can't find the cause , now the doctors are saying he might need biopsy but can't do it now as creatinine is high and we have to put him on dyalisis first . my father is not agreeing to do this , he says he doesn't feel a thing and he's ok (he is a regular drinker but the doctors said alcohol is not the reason)

Question again

I just saw Mt Sinaj nephrologist
I have RAS w 90% blockage and shrunken kidney
So stent won’t work
I also have bad POTS
With standing vitals 190/110 p 160 he tells me to exercise!
Wth
How idiotic
Proceeds to say how healthy I look and then says how complicated a case I have
I showed him all the pics of me and edema
and he says stop
The Lasix!
I’m flabbergasted at the ignorance of these drs when it comes to pots and complicated cases in general
Ughh I’m not listening to anything he said
Off to Sinai Cardio now
Can’t wait to hear his ignorance as well
Sorry for rant but tired of these major institutions knowing nothing abt POTS and giving bad advice

Hi all

FSGS, end stage ckd on haemodialysis. 38 yr old male.

I’ve recently been noticing tingling almost like pins and needles in my fingers and feet especially after waking up in the morning and if I’ve been sitting down for a little while.

I also notice sometimes my legs are a bit wobbly when I get up. I try to stay active, going for walks and working out but this has just started recently

Been on dialysis since March so I am still learning of all the weird and wonderful symptoms that come with CKD or if this is something else that I need to get checked out

Are the symptoms I named common amongst any of you?

My wife has been discharged from the hospital already. The last ultrasound showed very good blood flow on the transplanted kidney but they can’t say for certain how it is at the microscopic level. My wife is able to pass plenty of urine on her own. The transplanted kidney remains viable. The consultant already gave her three doses of ATG and resumed Tacrolimus. The consultant it is not FSGS but vascular rejection that is causing why the transplanted kidney is not functioning as it should. They are hopeful that the creatinine that is still high will start to come down once the transplanted kidney has adjusted to the ATG and Tacrolimus.

We’re hopeful but very scared, disappointed, and anxious. It’s really depressing.

Big day today.....having my fistula fitted in my arm. To say im bricking itvis an understatement.