drain and fill pain/no sleep

[jshabanian]

I have being doing PD for a couple of months now and still have drain and fill pain all the time.  I am on the cycler at night and the pain keeps me from sleeping.  I have tried different positions and rocking back and forth and nothing seems to help. 

I switched the cycler to tidal mode and it does help with the 2 drain and fills in the middle but I still have pain with drain/fill's #1 and #4.  I use lidocaine in the bags and that only helps a little and sometimes not at all.

I have an appt. next week with the surgeon who put in the catheter.  I hope he has a solution to this problem because I don't know how much more I can take.  I don't want to stop PD but the pain is unbearable.

Does anyone have any experience with this?

Thanks,
janet

[highway61]

I have being doing PD for a couple of months now and still have drain and fill pain all the time.  I am on the cycler at night and the pain keeps me from sleeping.  I have tried different positions and rocking back and forth and nothing seems to help. 

I switched the cycler to tidal mode and it does help with the 2 drain and fills in the middle but I still have pain with drain/fill's #1 and #4.  I use lidocaine in the bags and that only helps a little and sometimes not at all.

I have an appt. next week with the surgeon who put in the catheter.  I hope he has a solution to this problem because I don't know how much more I can take.  I don't want to stop PD but the pain is unbearable.

Does anyone have any experience with this?

Thanks,
janet

I have been on PD for a little over two months and have had that off and on. It doesn't sound like I had it as bad as you have it. I was able to deal with the worst of it with the PD Shuffle. You know you have to shake it to the left, and shake it to the right, if you can do it with some heft you may even sleep tonight.

You may need to have your catheter checked. I was luckier than that. It has been working for me. My cycler runs an eight hour cycle with 4 exchanges.

[jshabanian]

Thanks hiway61!  i will try the pd shuffle.  Anything to get relief.  I run 9 hours 20 min. with 4 exchanges.

[jeannea]

When it won't drain, I sit up. When it's worse I stand up and dance around. When it is at the worst, I stand up then lay my stomach over the bed with my feet still on the floor and cry. Lucky for me that's not often. I hope they have a solution for you. I hate to keep saying the obvious, but draining is harder if you're constipated. Hang in there, breathe through the pain, and hopefully things will get better.

[Joe]

I haven't experienced anything that acute. As highway mentioned, when I do have drain pain I find pinching off the line and doing the PD shuffle to reposition the catheter seems to help. I've found I needed to pinch off the line so I break the suction of the catheter inside.
Hope you find a solution for this.

[highway61]

Coolness, Joe! I never thought of pinching the hose. I have just done the PD shuffle to move the catheter around to keep it from sucking on things inside. Thanks Joe.

 

[Joe]

highway, you have to get the suction broken or the cath won't move. I've found once I get that done, I'm usually ok for the rest of the session.

[jshabanian]

I saw the surgeon today and he basically said there was not much he could do for the drain/fill pain.  My problem is that I had many hernias that he repaired when he put in the catheter.  There were many adhesion's from previous surgeries so he had to place the catheter low.  He says every time we mess with the catheter by trying to move it surgically, we take the risk of making it not work. With as many adhesion's as I have I don't want to take that risk. 

Just the thought of having to go back to hemo makes my skin crawl.  I will deal with the pain and be thankful it doesn't last long.  He also suggested putting the lidocaine directly into the catheter and waiting about 10 mins for it work, and then starting the exchange. 
When I go for my clinic appt. tomorrow I will ask the nurses how to do this safely.

Janet

[billybags]

Good, at least the Doctor knows what is going on and you got a good explanation why it is doing this, still doesn't make it any easier though does it.

[highway61]

Joe you are a genius! Last night I had a drain that was hurting and I pinched the hose and the cycler alarmed but the hose did move inside since that when I hit the 'OK' and 'Continue' button the drain trucked own well. Thanks Dude! You rock.