PD not going as expected

[Geiser100]

Ever since I've had my catheter put in I've had problems. I have bad pain when dry during the day. It's almost paralyzing. It's like a stabbing pain near my rectum and privates. I have pretty bad drain pain that makes me jump out of my skin, and now just recently I've been having painful fills. Im still doing manual exchanges but I start the Amia cycler Monday and quite frankly I'm terrified. The doctor says wait 6 weeks for the pain to go away and that it's normal. I'm just so stressed out. PD was supposed to be easy and the better choice. I feel like I made a mistake. If this pain keeps happening I can't see myself doing this every night.

[kickingandscreaming]

I'm so sorry that you're having such a rough time with PD.  It shouldn't be that bad.  Have anyone suggested that the catheter might be in a bad position and needs replacing?

As far as pain while empty that supports my previous thought about it being badly positioned. Maybe you can leave some fluid in at all times. 

I hope you can can find a way.

[Charlie B53]

I'll Second that vote for poor positioning of the cath.

While on PD my Nurse taught me I could 'Move' the cath slightly by squeezing the bag during an exchange.  Sort of like a water hose gone wild, the high pressure can cause it to 'move' and locate in a better position.

During a manual exchange it the very beginning of the Fill instead of hanging the bag "Hug" it as tight as possible.  This can create a lot of pressure and increase the flow, hopefully enough to make the cath move.

It wouldn't hurt to call your PD Nurse and verify that you will not cause yourself any injury.  Then again, some people are of the school it is far better to ask forgiveness rather than get permission.

It worked for me.  The moving the cath thing.  But I have very often done that other thing, later ask for forgiveness.

[Shaks24]

Talk to your nurse about using the "Tidal" setting when you start on the cycler. It leaves some fluid in you for each exchange except the last drain. It helped me big time with drain pain when I transitioned from manuals to the cycler. Almost 5 years later I still use the Tidal setting although I have not experienced drain pain for a long time. Have faith as there are tweaks they can do to improve the situation. Typically drain pain goes away with time on PD. As for feeling the catheter while you are dry, as others have stated if this continues it should be checked out with a scan or xray for possible repositioning. I've never done hemo but in my humble opinion, PD is the way to go if it works for you.

[Marilee]

Same here: Hubby started PD and had tremendous pain. We told the nurse and she said, "Yes, that's Drain Pain" (something nobody warned us about before the surgery). It turned out, though, that the catheter had moved. An X-Ray showed it up where the appendix lives and it required a second surgery in which they 'tethered' it into position. Hubby still gets drain pain or slow drain if he's lying down for the drain (so much for "while you sleep") but if he rolls over just so or sits up it usually resolves. I think it took him about 3 months to get the hang of it. Even now though (a year into it), I sometimes see him contorting and kinda poking on his tummy trying to jog the catheter loose (like it's stuck in a corner or something).

[Whamo]

PD isn't working out for  me either.  After almost six years on PD my PD lining is getting weaker.  That means I'll have to add more time on the machine or go back to doing hero.  I did that for two years and hated it.  What's worse is that because of my weak veins they'll probably use my leg vein.  That's a painful way to go.  I'm close to a transplant, but on/off the list.  My skin cancer and plastic surgery and skin graft must heal before I can be considered back one the transplant list, along with another colonoscopy.  I hate those.  I hate dialysis.