u/corcorancole

Going to call my nurse about this tomorrow but I’d figure I’d ask on hers too

I’ve gotten lost dwell of 30 minutes for the past 4 nights now (using claria PD cycler at home) and I’ve been getting some drain pain pretty regularly, sometime it’s super painful.

I’ve also recently moved my machine further away from me so I don’t have to listen to it but I was getting drain pain before that

Any advice? Has anyone else experienced similar problems? I read about changing ‘tidal settings’ but I think my nurse has to do that from the clinic. Thanks for reading.

my clinic isn’t open so I have nobody to ask

Im on a home PD cycler, recently switched my prescription from 2.5% x 5000ml, 2 bags and then a 7.5 2500ml that stays in me all day.

Now my prescription is another 3000ml bag of the 2.5% but I don’t have those sized bags so they said just use the 5000 but it looks like by the end of the therapy that it’s using basically the whole bag.

Did my nurse program it wrong or is the extra fluid not being used going in the drain bag? Anything helps & sorry for the long post. Thank you!

I wanted to share this win with you guys which will hopefully be encouraging, especially to those who are just starting dialysis and might feel overwhelmed

For context:
I was very close to dying back in January and had to get rushed on to PD. I’m 24M so they started me on home dialysis quickly.

I used to go to the gym everyday, and in hindsight a big part of my identity was being in good shape and being a digital entrepreneur with the goals of travelling the world. All of that gone with the kidney failure and it rlly screwed me up mentally for a bit.

This weekend I spent with friends from my church at a cottage and while I couldn’t go swimming sadly, I was able to play pickleball outside for hours with no worries and play frisbee golf. Months ago I collapsed trying to catch a frisbee in the air so I am definitely getting better and better

Really lifted up my spirits showing me I don’t have as many boundaries as before. While I can’t lift weights anymore I can still be an active, relatively normal 24 year old! I’m hyped to find out what else I can do. Thanks for reading!

I’ve found that in the summer when I have my AC on my solution gets cold even on the PD warmer. By the time for the first fill the solution is cold and super uncomfortable

Anyone found a work around for this or do I just need to turn my AC down?

What are some small things about dialysis that bug you? Nothing obvious. For me it’s the noises my stomach is always making since having solution in my peritoneum all day lol.

I always hate when I can see my belt and transfer set under my shirt. Some shirts it’s fine if they’re baggy but I’m wondering if anyone has any techniques for hiding it better?

I swear every day I go on CapCut there’s a feature missing. I like to use the ‘bounce out’ CapCut animation and half the time I go to use it and it’s just gone. Gone from my favourites and gone from the app entirely.

Same with my fonts I use, they just disappear and re appear from my favourites.

Why does this happen? Is it just me?

(I use CapCut on the Mac btw)

Been using a PD cycler for a few months now and I’d say I’m about as used to it mentally as one can get, but I still have trouble sleeping.

I work from home and considering doing Twin bags/manual exchanges while I’m at home in an attempt to sleep better. Any advice or anyone have experience switching?

I’m 24 years old. It’s been about 5 months since finding out I have CKD and around 4.5 months since I got my PD catheter inserted. They are leaning towards FSGS or some type of Vasculitis but they aren’t sure what I have.

Has it taken anyone else this long to get diagnosed or is it just me?