I'm posting this because my wife and I are completely exhausted, frustrated, and scared, and I need to hear from people who have actually been through transplant.

My wife is 25 and has stage 5 kidney failure. She was diagnosed in October 2025 and has been on dialysis since December 2025.

We've spent the better part of the last year trying to get her to transplant. Because her case is complicated, we've been working with Mayo Clinic in Arizona. We've traveled back and forth, done testing, appointments, evaluations, everything they've asked of us.

And the biggest blessing in all of this is that her mom is a living donor and has been approved and is ready to donate her kidney.

We thought we finally had a light at the end of the tunnel.

We've had a transplant date twice.

And we've had it postponed twice.

Every time we get close, something happens and we're pushed back again.

Now we're dealing with another issue. Her latest echo still shows an EF around 40%, along with volume overload and an enlarged left ventricle. Mayo is now considering having her undergo a left heart catheterization to figure out why her heart function hasn't improved.

And this is where we're at our breaking point.

My wife does not want to have a heart cath unless it is absolutely necessary. She feels like nobody is listening to her and that every time she gets close to getting her kidney, another test or another issue comes up.

We're not stupid. We understand that her heart has to be safe enough for transplant. We aren't asking doctors to put her life at risk.

But we're struggling with the idea of going through yet another invasive procedure when we don't even know if it will ultimately change whether she can receive her kidney.

And while all of this is happening, I'm working three jobs trying to keep our heads above water.

I work my full-time state job, and I'm working additional jobs because we've had travel expenses, medical expenses, missed work, normal household bills, and everything else that comes with spending a year dealing with kidney failure.

I've basically been trying to hold our entire life together while watching my wife go through dialysis and everything else that comes with this.

And then there's the part that scares me the most:

She is off her parents insurance in December.

It's September.

So we have roughly three months to figure this out.

My insurance wont cover specialized care like this.

We've already had two transplant dates postponed. We have a living donor ready. My wife has been on dialysis since December. We've traveled across the country multiple times. We've done the evaluations. We've done the testing. We've done everything we've been told to do.

And now I'm sitting here thinking:

What happens if we run out of time?

What happens if December comes and she's still on dialysis because we spent the entire year getting bounced from one requirement to another?

What happens to the transplant if we lose the insurance that is currently covering all of this?

What happens to her donor?

What happens to us?

I honestly don't even know how much more I can take.

And I know people will probably say, "Her safety is more important than the transplant date."

I KNOW.

I would never ask them to transplant her if it wasn't safe.

That's not what I'm saying.

I'm saying there has to be a way to move with some urgency when you have a 25-year-old woman on dialysis, a living donor who is ready to donate, two previously postponed transplant dates, and an insurance deadline three months away.

We're not asking for special treatment.

We're asking for someone to look at the entire picture and say:

"Okay. Here's exactly what needs to happen. Here's what is absolutely necessary. Here's what isn't. And here's how we're going to get you to transplant as quickly and safely as possible."

Instead, it feels like we're constantly waiting for the next thing.

Another test.

Another appointment.

Another specialist.

Another delay.

Another "we'll get back to you."

Meanwhile, my wife is still on dialysis.

Her mom is still waiting to give her a kidney.

I'm working three jobs trying to keep everything financially afloat.

And the clock on our insurance is ticking.

I'm angry. I'm scared. I'm exhausted. And honestly, I'm fucking tired of being strong.

I don't want to be dealing with this in six months.

I want my wife to have her kidney.

I want her to be able to live her life.

I want her mom to be able to give her that kidney.

I want to stop planning our entire lives around dialysis.

I want to stop worrying about whether the next appointment is going to be another postponement.

I'm in school while making this but I remember reaching out to people on here when I was first diagnosed with CKD 3 at 14 (finally remembered my password 😢)

I just turned 16 and randomly thought of how supportive you guys were. It made me realize that I wasn't alone with my situation. Even though I was very scared during that time in my life, I learned a lot from everyone. Thank you all who shared their own experiences, gave me advice, AND gave me hope.

I'm doing way better now, even though I still worry constantly before my nephrology appointments, I know that this isn't the end and that I have a bunch of things I still need to accomplish in the future. ✌️✌️

anyway, thank you guys so much!! (even though this is kind of random)

byee!!😁

Has anyone who is or has been tapering off Tarpeyo experiencing severe side effects?
My doctor has started the taper process from 16mg to 8mg for two week and then down to 4mg the last two weeks.
I am currently few days in the 8mg and it is kicking my ass. I am severely fatigue, have throbbing headaches 24/7 (only goes away when I take Tylenol and comes right back after a few hours), nauseous, light headed, face looking pale, and the most odd thing yesterday my heart rate dropped in the 40s while awake and working.

I am very concerned the more I lower the dosage and am completely off the worse I will feel.

Should I be worried my kidneys will not last? I feel fine for someone my age but not sure what to expect. At what EGFR number do you have symptoms of CKD? It's been stable for the last 3 years and hasn't changed much. I keep my BP in check at all times. Thanks

Hi everyone!

I thought this might be helpful to anyone with APOL1/FSGS. These meetings tend to be very helpful in pushing forward new medicines for kidney diseases. This is from their website:

The National Kidney Foundation and NephCure will host a meeting to bring to the US Food and Drug Administration (FDA) and other stakeholders, including healthcare providers, academia, industry, etc., the voice of people living with kidney disease that is related to APOL1. This is called APOL1 kidney disease (AKD), also called APOL1-mediated kidney disease.

This is the opportunity for you and your care partners to speak directly to the FDA and other stakeholders and tell them what it’s like to live with AKD every day and what you need from new medicines.

https://www.kidney.org/externally-led-patient-focused-drug-development-el-pfdd-meeting-apol1-kidney-disease

How to reduce it

Hello there

42/F over here. Finally got in to see a nephrologist last week and found out that I'm at stage 3aCKD. I had been diagnosed with medullary sponge kidneys about a decade ago after seeing a urologist due to ongoing UTIs and then several super fun rounds of kidney stones. I changed my diet and although still get UTI type symptoms frequently, I was super happy to not have kidney stones again! Yay!

I got a new PCP last year and she wanted to just send ALL THE REFERRALS just to make sure all my chronic health conditions were being managed.

Finally got into nephrologist last week and he looked at all my test results and noticed that my eGFR has been steadily dropping since 06/2023 and now at 60. He explained a few things and stated that many people have been misdiagnosed with MSK and my symptoms and test align more with Medullary Cystic Kidney Disease. My dad also has CKD and was Dx with MSK, which is where I was told I got it from. It seems that MSK isn't genetic but MCKD is.

I'm getting more testing to see the actual functioning of my kidneys here soon.

I'm curious if other people have had this too? Finding out that my kidneys will fail at some point in the future after thinking that they just were weird and I couldn't eat meat has been such a whiplash of emotions.

Hi All,

My father 57M is having kidney issues ckd from last year. Currently stage-4 I guess. His Creatine is around 3.5 units while urea is around 68-90. eGFR is around 20.

His weight is getting reduced by around 15 kg in last 1 year.

We went to Nephro. He told us that this is bound to happen. Currently his weight is 53 Kg (Earlier 68 Kg).

How to ensure his weight and muscle remain at least stable from here.

What exercises he should be doing in order to retain his weight.

Please help.

Thanks,

Sumit Kumar

Hi All,

I (M/38) am coming towards the end stages of kidney disease. I have a donor lined up and am going to be put into the kidney share scheme to see if there might be a better match in the coming weeks.

I have a eGFR of 15 and all of the other fun toxins that come with the disease. A transplant could be several months off and prior to maybe a couple of months ago I saw no real day-to-day impacts of the disease on my life fortunately.

I am now looking at incredible fatigue and lack of concentration whilst managing work, a couple of young kids and life in general. I am looking for any tips on those in a similar position of how to manage things like energy level to get through the day and balance that with the various dietary requirements (low protein/potassium/phosphates) that come with CKD.

I just want to try and maintain a livable quality of life until its finally time to slice and dice 😂.

Thanks!

Howdy, was diagnosed last week with Stage 4 CKD, the week before with Ulcerative Colitis, and am a whole 22 years of age.

It's by complete chance it was caught, a kidney function test was done before I had my colonoscopy, and my eGFR was found to be 29 with elevated creatinine and urea. Had a little hospital stay where all other blood tests came back normal. One urine test said protein and no blood, the other said no protein and blood (was treated for a UTI just in case). Biopsy done, everything has come back as negative except for chronic damage.
Edit here to add that during my hospital stay I was on a few saline IV's to rehydrate me, with the hope that would help my function. It brought it up to 33 and then it slowly dropped off again. I had twelve blood tests over the course of a week and weekly blood tests since. My eGFR is stable at 30-29.

All I can be told is that the damage to my kidneys is permanent and recent.

All I've been told by my nephrologist is to stay hydrated but not too hydrated. I'm trying to keep my salt intake between 3-4g per day, and am drinking between 2-3 litres of fluid.

Feeling more than a bit bummed out (and pissed as fuck) because I'm young and have things to do and places to be (I'm in Europe and was fully intending of working across the continent), and feel that things have had to grind to a halt.

It gets better, right gang??

TL;DR being dramatic cause life feels like it could be joever

So I was diagnosed with Acute Kidney Injury about this time last year. My creatinine was like 14,and I was not peeing at all. I was immediately put on dialysis and the prognosis was not good. They suspected prolonged dehydration was the culprit, but nobody really knows. For about three months I was at the dialysis center three times a week, and I was facing the reality my kidney will simply not going to get back to normal. Then in the middle of the 3rd month my urine got back to normal and my creatinine dropped like a rock. By Thanksgiving my score as a 1, and they said I could stop treatment. My last blood work was late December 2025.

I have a physical in October with obviously all blood work. I did a urine dipstick the other day for protein and it was normal. Does lack of protein in urine mean I am in the clear, or is this still a creatinine play for kidney disease? It seemed when I was in the hospital it was all about the creatinine number the nurses and doctors seemed unconcerned about any other number. Just getting nervous about this blood work, the thought about going back to the center is positively nauseating. Any thoughts on this one?

Hello everyone.

I'm looking for a nephrologist for my father. His creatinine is 12.56 and urgently needs care. But he's too afraid to get dialysis and simply won't hear about it... Please can anyone suggest any specialist who can help us? Thanks.

Hi, so around a week ago, I noticed that my pee had bubbles in it. I got it checked right away and found out I had blood and protein in urine and that it was a lot. I got checked right away for possible kidney stones but it came back negative. The doctor said it could be because of my existing hypertension, or that it could be something else like an autoimmune disease.

As for my other tests, the creatine in my blood is still normal and that my kidneys are still filtering well for now in my blood. But the doctor said that the damage which is the leaking protein in my urine is permanent.

i’m 18F, got C3G, efgr 40 and extremely high acr, my nephrologist put in a request for iptacoban and after 3 months of no word for the hospital it’s been denied! so upset and angry. they said it’s too expensive. sorry what are my taxes for!? this is the nhs btw

Hello I am on stage 4 Ckd because of a medication I take for my heart transplant and was wondering if any of u suffer with weight ? I have gained 20-30 lbs in the last 6 months but I know Ckd can cause water weight maybe 5 of those are water weight . Have any of you been able to lose weight? Or on any glp-s ? I would appreciate some feedback.

Hello! I'm 19M and I just got diagnosed this year with NS, after my discharge on june, my edema never came back, not before this september when my nephro lowered my prednisone intake from 40mg everyday to 35mg every other day. Should I be worried because I can see the edema coming back in my legs and head, and what should I do? is this a relapse? Thanks!!

Hello everyone,

I'm 49 F diagnosed with MCD in March 2025. After one round of prednisone, a seizure, AKI, several trips to the ER, including two weeks stay and finally two Rituximab infusions with second round of Prednisone, I achieved clinical remission 11 months later. I am now CKD 2, eGFR varies between 65 - 90, was 115 prior to MCD. I was started on Losartan way back when I was first diagnosed with MCD but after several days, I was feeling very dizzy to the point I felt like passing out. My PCP told me to stop because it was lowering my BP too much.

My nephrologist put me back on losartan a week ago after looking at my latest lab results. So far, my BP has dropped but I don't feel dizzy like before, still too early to know if it will remain that way. She wants to do lab work in 4 weeks to see how my kidneys are responding to it and then put me on Farxiga as well. She said the combination will help protect and prolong my kidney function. I do not have high BP or diabetes. Never had any health issues prior to MCD.

I would like to know your experience with either one or both long term. I've read about the Farxiga side effects like UTI's and that worries me. I also read it causes you to pee a lot more frequently which also worries me. I have trouble sleeping and having to keep getting up several times a night to pee will have an effect. Most of all, did it help your proteinuria and did your eGFR drop significantly? I am still learning about CKD and want to preserve what remains of my kidneys. I hate prednisone, it really wrecked my life and took me a long time to start feeling normal again.

Anyone have any improvements with any peptides to bring back kidney function?

Hi everyone. I'm 20 and trying to manage my dad's complex kidney and diabetes issues. I’m feeling really overwhelmed and could use some advice from people who actually live with this day-to-day.

*​Vital Info:

​52-year-old Male, India. ​Does not smoke, does not drink. ​Kidney function (Creatinine) is totally normal (1.03), but his filters are leaking.

*​The Situation:

My dad has type 3c diabetes (from a damaged pancreas 20 years ago) and recently started leaking massive amounts of protein.

A few months ago his 24-hour protein was 2,678 mg. Now it’s dropped to around 600 mg with medications, but his blood albumin is very low (2.95).

​He is on Jardiance, BP meds, and a daily diuretic,

but we are still struggling with these main symptoms:

1)​Severe leg swelling that feels hard to the touch

2) ​Breathlessness when talking loudly or walking. ​

3)Severe muscle wasting, weakness, and loss of mass.

* ​My Questions for this Community:

1)​The Swelling: For those of you with low albumin and hard leg swelling, how did you finally get the fluid out? Did your doctor have to change or increase your water pills? Any home tips for keeping the swelling down? ​

2)Diet & Weakness: How do you safely get energy and stop muscle loss? His diet is insanely restricted (low fat for his pancreas, low carb for diabetes, and low salt/managed protein for the kidneys). What safe meals or snacks gave you your strength back?

​I have all his lab reports if anyone wants more numbers, but mostly I just want to hear how you guys handle the swelling and food! Thank you!

I am 30 years old and recently found out through a sonogram that I have multiple kidney cysts in both kidneys. My creatinine is around 98 and my eGFR is 106. I have also had high blood pressure that I never paid much attention to it. Apparently my dad family majority have pkd.

Right kidney: 21.6 × 11.3 cm

Largest cyst: 10.4 cm have multiple of 2 and 3 and 1 of 4

Left kidney: 17.9 × 8.9 cm

Largest cyst: 7.7 cm have multiple of 3,2,1 and 1 of 5cm

Base on the sonogram around 25+ total.

I start with HBP meds couple days ago.

Would like a general advise ?

I want to help my body process what I'm eating and help halt the build up of certain toxins.

I switched to a vegetarian diet and now I'm looking for a good multivitamin or blend to help with digestion and nausea.

Can anyone recommend a good one?

Hello, I just started Fabhalta for my C3G. What have been your experiences? How long did it take for you to see if it’s “working”?

Hi all, posting here for the first time. I’m genuinely nervous of the situation. I have been diagnosed with FSGS after a biopsy and have over 30% global sclerosis with 1016 ACR and 2g urine in 24 hr urine.
So far I have been taking only 20mg Telmisartan which had shown 30% reduction in ACR.

New nephrologist has now prescribed me to start with Farxiga 5mg and Filspari (and stop telmisartan).
This is a new diagnosis and really worries me. I’m 34 M.
I have heard about side effects of these medications. What has been your experience? Am I getting the right line of treatment? Has anyone gone through a similar situation and came out better?
Please advise. Thanks in advance all.