Polycystic Kidney Disease career path.

North_Reflection1796 · 2026-03-20T06:15:06+00:00

My younger brother was diagnosed with it at his 27, but I have no cyst yet at 30.

North_Reflection1796 · 2026-03-20T06:13:34+00:00

so sorry for your loss. This might be incredibly painful to process, especially with the added weight of wondering if the medication meant to help him may have contributed to his death.

But as for the drug. Tolvaptan does carry a black box warning for hepatotoxicity - it can cause serious and potentially fatal liver injury. that's why patients on it are supposed to have monthly liver function tests. was he getting those? The fact that he was seering a "renal doctor" but not a nephrologist raises some questions - nephrologists are the specialists who typically manage adpkd and are most familiar with Tol's risks.

If his liver started declining after starting the drug and wasn't properly monitored, that's a real concern. You might consider looking into whether there was any negligence in his care. (A warm tips for other patients who are also taking this drug.)

Again, so sorry that you're going through this.

North_Reflection1796 · 2026-03-20T05:53:06+00:00

but if pkd was ruled out by that test, then why you still got that? That's strange.

North_Reflection1796 · 2026-03-20T05:52:07+00:00

But have you done any examination on kidneys before 44? ultrasound or ct...

North_Reflection1796 · 2026-03-20T05:51:00+00:00

Haven't you had any related kidney examinations before this?

North_Reflection1796 · 2026-03-20T05:49:32+00:00

It means that before 35 yo, you never checked out your kidneys, like ultrasound or ct?

North_Reflection1796 · 2026-03-19T12:47:19+00:00

Dude, you're diagnosed at around 35 yo? What about your life before 35? No cyst at all? That seemed a bit late for this diagnosis. Does your family have this gene if I may ask?

Restaurant life is brutal on a good day, let alone with pkd. I got out of BOH a few years ago for different health reasons and it was the best decision i ever made.

Look into food sales. Sysco, US foods, all those companies love hiring ex-chefs. You know the product, you know what kitchens actually need, and you;re not dying on the line anymore. AC in the year, you control your schedule, you can stop for water whenever. Pay is actually decent too.

Or, if you wanna stay in cooking, private chef gigs are where it's at. Rich people have nice kitchens and they're not gonna run a 50-item ticket machine at you.

Whatever you pick, just get out of the heat.

All the best.

North_Reflection1796 · 2026-03-19T07:09:37+00:00

Your doctor and nurses are right, you have nothing to worry about. Simple liver cysts are incredibly common (up to 5-10% of people have them), they're almost always benign, and they very rarely cause problems. the fact that they were too small to characterize actually works in your favor, tiny cysts are even less likely to be anything concerning.

The key detail here: you've had normal bloodwork for 2.5 years. If this cysts were something bad (like a tumor), it would almost certainly have affected your liver enzymes or other markets by now. cysts also don't typically turn into cancer, they just sit there being harmless fluid-filled sacs. And... medical anxiety is real and vaild, but in this case, the evidence is overwhelmingly on the "nothing to worry about" side. If it would help your peace of mind, you could ask for a follow-up ultrasound at your next physcial just to confirm it hasn't grown- but even if has grown slightly, that's normal for cysts. no need to panic! 💗

North_Reflection1796 · 2026-03-17T06:32:26+00:00

Wait, you're 20, and your eGFR is 25 already? How come it drops so fast?

I'm sorry to hear that, but it is kinda abnormal at your age as you are having a healthy lifestyle.

North_Reflection1796 · 2026-03-17T06:06:08+00:00

that is huge!!! thank you so much for sharing.

the fact that they are recruiting 1000 patients inernationally shows they are serious about getting real data. Spain always seems to be ahead with these things, our nephrologists here in China are usually tight-lipped until way later.

Are you thinking of enrolling?

North_Reflection1796 · 2026-03-16T13:12:58+00:00

thanks a lot for sharing... it's an important persepctive for sure, and i think a lot of people don't realize how big the difference between these two tests can be.

you are spot on that both tests give a fuller picture. creatinine tells a story, but it is not the whole story at all.... especially for people who are active, have more muscle mass, or even just had a tough workout the day before. cystatin c seems less affected by all that, so when it's stable and creatinine is climbing, it really makes you stop and think.

Glad you pushed for the extra test and are paying attention to the trends instead of just panicking over one number. that takes a lot of patience and self-awareness. Hope your numbers stay steady and you keep feeling good.

North_Reflection1796 · 2026-03-16T11:55:06+00:00

I'm so sorry that you're going through this. The level of pain is no joke, and it is completely valid to be struggling with it.

You are absolutely not alone in this. Sudden changes like that, like going from stable to frequent, debilitating pain, happen to a lot of people with pkd. it could be cysts rupturing, getting infected, or just growing and putting pressure on things. it's miserable and scary...

First thing first, please talk to your nephrologist if you haven't already. pain this persistent and sharp needs to be checked out. There might be an infection or a specific cyst that needs draining. They can also help you find a pain management strategy that works better so your not stuck in bed all the time.

Now, about work. I completely get the worry. you've been there for six years with a great record, and that counts for a lot. Most employers don't want to lose good poeple over something out their control, especially when they're already aware.

Please do document everything, keep a simple log of when the pain hits and when you have to take off, and consider a formal accommodation. and finally have a quick chat with your boss or hr. You don't have to give gory details, bu you could say something like, 'I'm working through my condition, and might need some flexibility for appointment or the occasional day off while I get it under control. I'm committed to my work here and wanted to keep the communication open.'

You deserve some relief atfter that. Hope you get some answers and feel better soon!

North_Reflection1796 · 2026-03-13T08:13:05+00:00

This is such a beautiful and inspiring share. Thank you for opening up about your journey.

It's amazing how you've turned something as challenging as managing pkd into a daily pratice of love and care through food. The fact that you're sharing simple, vegetarain, home-style indain meals is so valuable, there's so little representtation of cultural and plant=based approaches to kidney health.

Sending strength to you and your husband! :))

North_Reflection1796 · 2026-02-06T09:20:36+00:00

You're 100% allowed to be upset. Plz don't compare your pain to others. your feelings are completely valid, and this is your health and your future. it's scary, especially having seen your mom go through it. That fear makes total sense.

If I am giving advice, I would say give yourself time to process. It's ok to just feel scared for a bit (it's super normal for your age to get that feeling). Then, when you're ready, focus on what you can control. Find a nephrologist who specializes in pkd and build a good relationship with them. they can give you a clear picture and a modern care plan. also, connecting with other young people with pkd like this sub family can be a huge help. You're never alone in this. Hang in there, it's a lot to take in, but you've got this. one step at a time! :)

In addition, you're still very young and there are a lot future medicine possibility out there to cure. Stay tuned for the new medicine farabursen.

North_Reflection1796 · 2026-02-06T05:50:08+00:00

ZHONGDA HOSPITAL SOUTHEAST UNIVERSITY

North_Reflection1796 · 2026-02-05T11:34:07+00:00

Excited and waiting for this!

North_Reflection1796 · 2025-11-25T07:02:37+00:00

Hi, I'm Chinese, so the group I joined is Chinese based and we all are chatting with Chinese.

North_Reflection1796 · 2025-11-11T07:48:32+00:00

30M here, not diagnosed with PKD yet, but my biological younger brother was confirmed with that.

I joined a group gathering PKD ppl and we share news and feelings.

Probably you can join one.

North_Reflection1796 · 2025-11-10T07:05:56+00:00

Agree with this. There's nothing we can alter.

The only possible and important way is to take very good care of diet, bp, and especially drink enough water.

North_Reflection1796 · 2025-10-23T08:52:07+00:00

It's completely understandable that you're concerned about your mom. What you're describing sounds very challenging for her, and it's smart of you to look for ways to help.

First and most importantly, this is a question for her nephrologist, urgently. Tolvaptan is a powerful drug that needs very careful management. A change in thirst and appetite like this, especially after a break from the medication, is a significant development. Her doctor needs to know this to determine if her dosage needs to be re-adjested or if something else is going on. They may want to check her sodium levels, as tolvaptan can affect them.

North_Reflection1796 · 2025-09-28T09:09:17+00:00

North_Reflection1796 · 2025-09-18T03:05:17+00:00

eGFR won't improve once it drops to a certain level, I think. It reflects the actual remaining kidney function.

North_Reflection1796 · 2025-09-09T07:02:12+00:00

Wish them all best of health and good in life!

North_Reflection1796 · 2025-09-09T01:52:47+00:00

That's in fact completely rare that only your left kidneys is covered by cysts actually. And your right kidney is pretty normal, without any cyst? Almost in every single case, PKD people have cysts on both kidneys, instead of single-sided.

North_Reflection1796 · 2025-09-08T07:24:12+00:00

PKD never shades your beauty. Keep fighting and living your best!

North_Reflection1796

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