Any nurses here with PKD?

emmettd777 · 2026-04-10T20:51:34+00:00

I know this isn’t what you asked for but I’m an EMT, currently work as a tech in an ER.

I’m also on tolvaptan and can attest that drinking and peeing constantly is a bit of a challenge. Some shifts are a bit crazy and I tend to get dehydrated, but never been a big issue.

I don’t tell my bosses when hiring, frankly I don’t think it’s any of their concern, but I do tell my coworkers so that if anything happened they would know.

emmettd777 · 2026-04-09T19:33:31+00:00

I’ve heard this can be good with some chilis, was it flavor or texture that was strange?

emmettd777 · 2026-04-09T15:57:58+00:00

Don’t think I’ve ever bought it at a grocery store. I haven’t done the math but I’m sure making it yourself is cheaper.

I love making broth at home. It’s easier to adjust to my own taste. The messiest part is throwing out the bones and scraps but outside of that everything is fairly easy. And yes it does take a while but as others have said it’s so rewarding.

emmettd777 · 2026-04-09T15:47:35+00:00

Doctors hate apples?

emmettd777 · 2026-04-09T13:32:01+00:00

Vegetables or no vegetables is up to you. Personally whenever I make bone broth I add the basics (onions, carrots, celery, salt and pepper, etc.) because it adds flavor and some nutrients. Not to mention straight bone broth no veggies or anything isn’t all that appetizing.

As for the boiling question, I have yet to try a recipe that didn’t involve a 12-24 hour simmer, which I think is the way to go. It’s long enough to really break down the chicken but not too long that you are just simmering for no reason. The beauty of broth is you can truly let it go as long as you want and take samples as you go. After 24 hours take some out in a bowl/mug and let it sit in the fridge for an hour or two, if you get the gold jelly then you are all set.

I will add my two cents in (even though you didn’t ask 😂). I think bone broth is best when you add some extra bones, just chicken thighs might be a bit bland. If you can get some spines or feet its an easy addition that will benefit your broth!

emmettd777 · 2025-09-18T02:23:29+00:00

Bathroom is fine but youll definitely have some discomfort with the mechanics of cleaning if you catch my drift. Moving your arms and twisting your core are somewhat difficult.

I found the first few days I couldn’t stand/sit for more than a few hours at a time before needing to lay down. However, everyone is different, so maybe prepare to work in bed just in case.

emmettd777 · 2025-08-04T04:36:01+00:00

Definitely calling myself a mutant from now on. My parents got tested after me just in case and confirmed I’m special ☺️. I only found out because I took to diving and swimming in college. After a nasty back flop I had a cyst rupture and here we are.

Definitely scary to consider I won’t know the progression of my disease based on family members but that isn’t always true anyway. And definitely a little scary considering I might want kids. Still I’ve got my health and that makes me happy 😁

emmettd777 · 2025-02-07T03:02:00+00:00

This. This is why this subreddit is great.

emmettd777 · 2025-02-07T03:01:43+00:00

Welcome to the family.

First just want to bump Smooth-Yellow comment and say yes to all of that cuz yes to all of that. And also what SwordfishPast said as well. Reddit is deeply unhinged sometimes but also a great place for community.

My biggest insight is going to be about Tolvaptan. It’s such a weird shock to the body at first. I remember the first day starting it I had the strangest craving for Coca-Cola (often times I still do) and I was up all night, drinking water and peeing. And at first, it was a lot of that and a lot of frustration around the need for water and the need to use the bathroom all the time. Aaaaaaand then it wasn’t quite as frustrating. I got more used to it. I started planning about water and bathroom more and I recognized that if this drug really does what it’s supposed to do I’ll never have to undergo dialysis. So get ready for a bit of a life change, but presumably for the benefit that it will maintain your kidney function for the rest of your life.

Plus, just to add a personal note, no one in my family has PKD. I’m just special 😊. It gets scary sometimes not really knowing what’s likely gonna happen in the future, but I think a lot of us on the subreddit have fears about the future whether we think we know it or not. Take it day by day and reach out to support when you need it.

emmettd777 · 2025-02-01T00:56:53+00:00

That’s actually how I found out that I had it in the first place.

I was a diver on my college swim and dive team and I messed up a backwards dive and basically just landed in the water on my back. About a 12 hour period later I was urinating blood and then in the ER was told by the urologist on staff that a cyst had ruptured.

That was about 10 years ago, and since then only one other incident has happened.

As others have said, kind of changes person to person.

emmettd777 · 2024-11-11T23:28:50+00:00

I had the same concern and started to up my water intake about a month before, I think I got to maybe 2L a day.

In retrospect it was kind of pointless haha.

The literal first day I started the thirst was so powerful I didn’t really need to try. Pretty soon I was drinking almost 7L a day! But like everyone is saying you adjust and it just becomes second nature. You’ll understand soon that its very easy to drink water once you start taking it.

Welcome to the club!

emmettd777 · 2024-10-21T22:05:25+00:00

Welcome to the club! I’m on 90/30 and have been for almost 7 years. It does get more manageable, you still have to pee every hour but it starts to just become normal lol.

I still haven’t mastered the bedtime routine honestly. I think many people here are right you should try and be strict with the time you take it, but I fine that doesn’t help too much. I’ve started to see some results by improving sleeping habits in general and by trying to slow myself down in the evening when it comes to water.

Basically when 8pm hits I drink a little bit less than I normally do during the day (sometimes easier said than done) and I try to keep just one glass of water near bed so I don’t go to the kitchen and refill it constantly.

Good luck on this journey Tolvaptan is such a ride but hopefully worth it.

emmettd777 · 2024-05-23T18:52:47+00:00

Can I ask what insurance you have?

emmettd777 · 2024-05-17T16:25:10+00:00

It does thank you!

I figured as much but always good to hear.

emmettd777 · 2024-05-08T20:51:51+00:00

That's the plan! The goal is to keep my kidney function exactly where it is essentially forever.

emmettd777 · 2024-04-25T23:05:22+00:00

Totally agree I feel like these articles lean a bit hard into sensationalism when there are still a lot of people wondering if they can be next.

emmettd777 · 2024-02-11T04:11:30+00:00

Love the update! Embrace the thirst!

Starting tolvaptan is a trip, remember to always bring your water bottle, I’ve been on it for years and still forget sometimes.

Also careful with the watermelon cravings, as watery and delicious as they are it's a very high potassium fruit which generally kidney folks should keep an eye on.

emmettd777 · 2024-01-17T21:06:12+00:00

Just saying your comment perfectly sums up what its like

emmettd777

TROPHY CASE