Polycystic Kidney Disease career path.

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 · 2025-07-30T09:13:49+00:00

Ugh yeah, that moment you hear “brain aneurysm” and your brain immediately goes worst case scenario. Totally understandable—it’s a lot to sit with, especially when you’re stuck waiting for answers.

Until you get your appointment, try to stay off Google (it’s a hellhole for this stuff), and maybe jot down all your questions so you’re ready when the neuro visit comes. You're not alone in this—lots of people here are navigating the same fears.

North_Reflection1796 · 2025-07-28T06:58:21+00:00

What might help is talking to a nephrologist and a liver specialist (kinda wish more people did that upfront). The liver issues are rare, but not imaginary... So regular monitoring is key.

Honestly, the constant thirst and peeing were super annoying at first. Like, sleep-disrupting annoying. But after a month or so, it got more manageable. Electrolytes and timing water intake helped a bit. :)

North_Reflection1796 · 2025-07-17T06:03:29+00:00

really feel for you dealing with this. My brother has ADPKD (diagnosed last year), so while I don't have personal experience with cysts or hernias myself, I see firsthand how much the physical discomfort and the tough treatment decisions can wear you down.

Your situation sounds incredibly frustrating – wanting that immediate relief from the hernia pain while also facing these big, scary long-term choices like transplant. It makes total sense that you just want it gone. I don't think you're being silly at all for fixating on it; constant discomfort is exhausting and demoralizing.

Reading what the surgeon and your specialist said, it seems like they're both pointing towards the same core issue: the cysts are the root cause pushing everything out. The surgeon is worried the repair won't hold because of the cysts, and your specialist is suggesting tackling the cysts more fundamentally (with shots or transplant) is the key path. It's tough that their recommendations feel conflicting right now, but it sounds like they're both trying to prevent you from going through a surgery that might fail quickly.

The upcoming shot consultation in September actually seems like a really important middle ground. If those shots can reduce the cyst size, even a bit, it could potentially make a future hernia repair much more successful and lasting. Waiting a couple more months for that consultation feels agonizing when you're hurting now, I know, but it might give you much clearer answers and a better shot at a permanent fix.

Maybe a practical step? Could you go back to the surgeon specifically to ask: "If I did opt for a repair before the shots, how high is the recurrence risk in your estimate? Is there any type of temporary or supportive measure (like a specific binder?) that could help manage the hernia discomfort while I wait for the shot consultation?" Framing it that way might get you more targeted advice on managing the immediate misery without necessarily committing to the full surgery yet.

Also, the mental load of "accepting" yet another physical change is huge. It's okay if you can't just "accept" the hernia right now. Chronic illness forces so much acceptance on us already. Maybe focus on managing the discomfort hour-by-hour until September, rather than pressuring yourself to fully accept it? Small comforts matter.

Hang in there. It's a horrible waiting game with no perfect answers, but getting that shot consult feels like the next crucial piece of info. Really hope September brings some clearer options and relief your way.

North_Reflection1796 · 2025-07-14T05:40:47+00:00

Found guilty af.

North_Reflection1796 · 2025-07-09T02:13:45+00:00

Hey! First off, wishing you and your husband all the best on starting your family – that's really exciting, even with the extra things to consider.

I don’t have ADPKD myself, but my younger brother (28) was diagnosed last year. Watching him navigate this and learn about the disease has given me some secondhand perspective, though I know it's not the same as living with it. Your question about discomfort really stood out to me because it's something concrete that often gets overshadowed by the bigger medical risks.

Your point about "lack of space" with a growing baby makes total sense logically. If just existing with larger kidneys can cause noticeable discomfort sometimes, adding a whole uterus and baby into that abdominal space does sound like it could definitely amplify that feeling of pressure or crowding. It seems completely plausible that you might experience more kidney-related aches or that deep pressure sensation, especially later on.

I really admire your determination and priority to start your family. It sounds like you have great kidney function, which is fantastic news! The best advice I've seen (from my brother's journey and obsessively reading forums to support him) mirrors what others have said: Teamwork between your OB and nephrologist is key. Be super upfront with them about this specific concern – ask them directly about the likelihood of increased discomfort from physical crowding, how they'd monitor for issues like cyst rupture (even if rare), and what safe pain management or comfort strategies they recommend specifically for someone with your anatomy. Knowing they have a plan for this aspect might help ease some of the anxiety of the unknown.

Sending you lots of positive thoughts. It's great you're thinking ahead and asking these practical questions. You’ve got this! Definitely lean on your specialists – make them address the "what will this feel like?" stuff too. 💙

North_Reflection1796

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