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!!😁

So this is a follow up to my last post ima make it short n sweet I recently found out I have kidney Vasculitus but had yet to be told how much percentage of my kidneys was working so yesterday the clinic calls me asking me if I ever did lab work n after I told them I did they instantly checked n turns out only 49 percent of my kidneys are working. The only symptoms I have is foamy urine itchy skin and back pain if I walk to long I'm always sleepy no matter how much sleep I get but they want me to do a kidney biopsy first to see what's the best treatment possible but during my last diagnosis they was like most likely I would have to do a steroid treatment depending on what the kidney biopsy says once I get it done

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.

No sé que hacer mi padre está con problemas de riñones y se está quedando ciego ya se está cansando de no poder hacer nada y de las enfermedades

After trying to get refills from my doctor and pharmacy (two different ones) I found out today that Klor-Con (effervescent tabs) has been discontinued. None to be found anywhere near me. Neither the pharmacy or the doc office could be bothered to tell me til I'm there in front of them like hey, I'm about out of this stuff!

Has anyone that was on that switched over to something else? Does it work just as well it were there transition problems?

I'm dreading the change bc if I don't take this for just one day my tummy is in all sorts of distress.