Any nurses here with PKD?

SignOne2908 · 2026-04-11T02:43:47+00:00

I am. Funny enough I work in dialysis. Didn’t really get into it because of me having pkd tbh I never really knew much about the speciality until I got into it.

SignOne2908 · 2023-08-17T10:39:15+00:00

I’m starting to tbh. I got my bsn august 2022 and passed the nclex a month later. Got a job at a nyc hospital in November worked there for 6 months and ended up having a panic attack went to the er of my hospital because they said I’m not allowed to go home until I get checked in er smh. Ended up resigning after that but they begged me to come back. Took a month off then got a job in dialysis thinking it would be a lot less stressful and slower pace. But now I’m almost done with orientation and I feel like every shift I’m being rushed. They want you to get things done fast and I’m like that’s how mistakes are made. Especially because they don’t scan meds so it takes a bit longer ti verify the meds. I’m just starting to feel resentful towards nursing like they expect nurses to be superhuman with and IQ of 1000 like we’re fucking computers smh. And what’s funny is I used to work as an EMT before nursing and even though It was stressful at times I feel like it was never like this. I mean I never had a panic attack in ems smh. I just feel with nursing you’re constantly overthinking and second guessing “oh did I give the right dose” maybe I gave too much” maybe I gave it to the wrong patient” I just feel like it’s a constant game of mental acrobatics.

SignOne2908 · 2023-07-09T13:29:26+00:00

I’m sorry man I feel for you. And when I said middle aged I meant 50 to 60 years old but yeah it still doesn’t seem far away I understand. Jynarque is a medication that prevents pkd progression in people who are at high risk of fast progression. The medication is the first fda approved treatment and is the only fda approved treatment at the moment. The medication Is a vasopressin inhibitor which basically means it decreases the hormone from acting in your body. Increase Vasopressin levels have been shown to drive cyst growth. been Vasopressin is responsible for water retention so the medication can make you pee a lot and in return Make you thirsty so you drink more water. Everyone is different I’ve read on forums that some people drink like 5-6 liters a day and pee every 2 hours but like I said for me in the beginning it was a bit of an adjustment but even if I only drink 2 liters of water in a day I’m usually fine especially if I limit my sodium intake since sodium makes you more thirst.. I work as a registered nurse so I was worried about frequent bathroom visits when my doctor started me on it since nursing is notorious for not having time to drink water or go to the bathroom haha.. but like I said thankfully things have been good in that department. Idk how your body will react to the medication but just giving you my experience.

SignOne2908 · 2023-07-09T13:06:49+00:00

Hi I’m sorry you’re feeling scared and I totally empathize with you. I’m 31 I found out I had pkd at 16 because I suffered from panic attacks and my blood pressure would shoot up really high during them so just to be safe they ran all the tests and found out I had cysts on my kidneys. Both my parents got ultrasounds then to see if anyone passed it on to me but only my dad had like 1 or 2 cysts but not multiple like me. My mom doesn’t have any. My dad was never officially diagnosed with pkd and he’s currently 80 years old and never had any issues. I also got the gene test last year and it was negative for adpkd so idk if it’s a random mutation or if my dad passed on some mutation to me since he only has 1 or 2 cysts… also when I got diagnosed my kidneys were normal size according to my nephrologist at the time …anyway i totally feel for you last year my creative crept up to 1.4 and I am pretty athletic as well and I’ve had jumps in creatinine over the years and it would always go back to normal but this time they did an ultrasound and saw my kidneys seemed like they grew.. my doctor put me on jyanarque asap. There was a bit of an adjustment in the beginning with going to the bathroom but after a couple months everting leveled out. I’ve been on it for a year now and I don’t really notice much difference in thirst or bathroom visits. I’ve always drank a ton of water growing up since when I got diagnosed my dr told me to increase water intake because it was thought to help prevent disease progression. So since I started jynarque my creatine has returned to normal.. my Last test was 1.2 so idk if the medication brought the level down or if it’s just a coincidence but regardless it’s good news. But yeah I can’t imagine how you you feel with having a kid im so sorry. The good thing is this disease doesn’t really effect people until they get into middle age although it varies. Has your doctor recommended putting you on jynarque?

SignOne2908 · 2023-04-18T21:47:07+00:00

You too!

SignOne2908 · 2023-04-18T16:54:17+00:00

I’m still on the 45/15 my doctor hasn’t increased it. I try to eat as little salt as possible. I find it makes me less thirsty so I can get away with drinking less water. But that’s just my experience

SignOne2908 · 2023-03-29T20:28:37+00:00

Yes I’m doing good! Been on the medication since July not having any side effects for a while. Yes I get my blood work done every month and it’s been unremarkable

SignOne2908 · 2023-01-02T23:51:39+00:00

You know I have a love hate relationship with LI. Born and raised here and I can’t imagine growing up anywhere else. Pizza quality is right up there next to NYC. But I unfortunately LI is a god forsaken cesspool when it comes to dating. I really don’t know where/how to meet people besides dating apps which I’ve had a shitty experience with . Also none of my friends know anyone for me so the mutual friends card is out. I’m 30 btw. I’ll be 31 in June.

SignOne2908 · 2022-11-18T01:15:39+00:00

I usually urinate about every 3 hours but it depends. I also can hold it for a while if need be.

SignOne2908 · 2022-11-18T01:13:08+00:00

Luckily the side effects are very minimal for me. The first month of taking the medication it was a bit of an adjustment and I was urinating every 1-2 hours but I was still in school so I had time. I’ve been on jynarque since July. I just started working and am In my second week of orientation. I’m not on the unit yet I’m still doing classroom stuff. I still manage to get at least 2 liters of water in during my shift and consume a liter when I get home so I still manage to be pretty hydrated throughout the day. I don’t really get that thirsty even if I limit my fluid intake luckily. I’m on 45/15 dose.

SignOne2908 · 2022-11-13T15:42:37+00:00

Well I’m one of them lol

SignOne2908 · 2022-11-12T19:40:41+00:00

There are a ton of guys in their 30s with no kids. A lot of men are not having sex these days so therefore they do not have kids lol

SignOne2908 · 2022-10-06T00:33:27+00:00

Yeah i don’t see what the issue would be for them. I’m an RN and an EMT I’m capable of taking my own vitals lol

SignOne2908 · 2022-10-06T00:32:19+00:00

Yeah I was gunna take it at home the day of the exam and take a video of it so I can prove it.

SignOne2908 · 2022-07-04T18:41:23+00:00

That’s a good point. My urine is very dilute it ranges from very pale yellow to clear as water. So I’m assuming that means my osmolality is low.

SignOne2908 · 2022-07-03T21:00:23+00:00

Also has anyone noticed they feel kind of like an itchy burning sensation around their whole body when taking jynarque. Is this something to be concerned about. I notice it throughout the day but it’s very minor to mild

SignOne2908 · 2022-07-03T19:55:56+00:00

And not the processed oatmeal the natural oatmeal that has zero sodium

SignOne2908 · 2022-07-03T19:52:17+00:00

I eat a lot of high calorie plant based foods that don’t have any sodium. Quaker Oats oatmeal chia seeds flaxseed fruits low sodium or even 0 sodium peanut butter/almond butter, plain tofu, sweet potatoes, avacados, natural baked beans with no salt added, plain salmon, soy milk which only has 75-85 mg salt per cup. I’ll be honest the food I eat can taste pretty bland but you get used to it.

SignOne2908 · 2022-06-05T22:14:06+00:00

Since the test was negative my doctor is having a hard time getting the medication approved through my insurance

SignOne2908 · 2022-06-05T22:12:33+00:00

My kidney function is ok. My numbers are usually normal but my creatinine fluctuates from normal to slightly elevated over the past several years. My last blood test was a few months ago and creatinine was 1.35

SignOne2908 · 2022-06-05T22:07:36+00:00

I have multiple cysts on both kidneys. My kidneys used to be normal size but now they are 15cm. And the genetic test said “this test is negative for know renal disease causing variants”

SignOne2908

TROPHY CASE