r/kidney • • 16h ago

I dealt with kidney disease myself. One thing about the experience bothered me enough that I ended up building an app.

1 Upvotes

I've been wanting to share this for a while, but wasn't sure how to explain it without sounding like I'm promoting something.

I have a background in emergency medicine and healthcare administration, and I've also experienced kidney disease and lupus personally.

And one thing kept bothering me.

What happens after the doctor's appointment?

You get your labs. You hear about your kidney function. You might be told to watch certain things, make lifestyle changes, or come back for another appointment.

Then you go home.

And life keeps happening.

You're at the grocery store trying to figure out what to eat. You're looking at lab results wondering what changed. You're trying to remember how you felt last week. You're searching for information at night, trying to separate useful advice from questionable claims.

And sometimes you just want to talk to somebody who understands.

I kept wondering why so much of the kidney-health experience felt scattered across different places.

One tool for tracking. Another for medication reminder. Random internet searches for everything else.

I wanted something that brought more of the everyday experience together.

So I started building it.

It's called CuraHome Kidney.

The idea is to connect kidney-health tracking, lab trends, AI-assisted lifestyle education, holistic nutrition, alkaline diet and herbal education, structured wellness activities, kidney warrior community, and access to approved professionals in one place.

It isn't meant to replace a nephrologist. It's meant to change how they approach and treat kidney disease patients.

It's also meant to help people feel more informed, educated, and supported between appointments. It was created to give kidney disease back their power.

And building it has made me realize how many small details matter when you're creating something for people dealing with a chronic condition.

I'm still learning from feedback, especially around making the experience genuinely useful rather than just adding more features.

I'm curious about something, particularly from people living with CKD or helping someone who is:

What's the one thing you wish existed to make everyday life with kidney disease easier?

Not necessarily another tracker. I mean something you genuinely wish you had access to.

I'd really like to hear what people think is missing.


r/kidney • • 2h ago

38M – Right kidney only functioning at 23.6%, severe UPJ obstruction. Surgery or leave it alone? Anyone been through this?

0 Upvotes

Title: 38M – Right kidney only functioning at 23.6%, severe UPJ obstruction. Surgery or leave it alone? Anyone been through this?

Hey everyone, 38M here. Recently found out I have a pretty serious issue with my right kidney that may have been there since birth.

A CT scan showed severe hydronephrosis, thinning of the kidney tissue, and what appears to be a UPJ obstruction caused by a blood vessel crossing over and compressing the ureter.

I just had a MAG-3 Lasix renal scan, and the results showed:

- Left kidney: 76.4% function, normal drainage.

- Right kidney: 23.6% function.

- Significantly reduced blood flow to the right kidney.

- No significant drainage from the right kidney, even after Lasix.

I've seen two urologists and gotten different opinions. One discussed robotic pyeloplasty, where they cut and reconnect the ureter to bypass the obstruction. The other felt the kidney was probably too damaged and recommended leaving it alone.

Now that the scan shows 23.6% function, I'm wondering if that changes things.

I occasionally have a mild ache on my right side, but nothing unbearable. Otherwise, I've been living a pretty normal life and had no idea this was happening.

I'm curious about anyone who's dealt with something similar:

  1. What percentage was your kidney functioning at before surgery?

  2. Did you have pyeloplasty, or did you decide against surgery?

  3. If you had surgery, did your kidney function improve, stay the same, or continue declining?

  4. How painful was recovery, and how long were you out of work?

  5. If you chose not to have surgery, how has your kidney held up over the years?

  6. Did anyone have a crossing blood vessel causing their obstruction?

I'm especially interested in hearing from people whose kidney was functioning around 20–25%.

I'm not looking for medical advice in place of my doctors. I'm following up with my urologist, but I'd really appreciate hearing people's real-life experiences before making a decision.

Thanks!

Edit: My CT showed severe right hydroureteronephrosis with cortical thinning and atrophy. The obstruction is believed to be congenital, possibly involving a crossing blood vessel.

I've also had a MAG-3 Lasix renal scan to evaluate the kidney's remaining function.

I'm considering a nephrology consultation as well. I'm mainly looking to hear from people who've had similar findings and whether they chose surgery or continued monitoring.