how to get used to drain pain?

[curiousmind2019]

So I am back on manual PD as I cannot figure out how to work with the cycler without rolling on floor in pain.

This is my situation. On manual, I can control the speed and I typically slow it way down (2ml/seconds) when I drain so that the sharp pinch becomes more of a bruising pain. However, I have notice that even so, pain always kick in before I'm completely dry. I don't think I have ever gotten to a spot where the transfer set is open and there's nothing coming out. I usually have to close the transfer set due to pain before that happens. So if that's the case, how will I ever get over the initial drain phase if I move to the cycler? I understand that it will keep trying as long as it detected fluid even if I'm in pain and that I can't close the transfer set to bypass it when that happens (the Baxter Amia doesn't have an option).

Also, draining slowly by controlling my transfer set helps me avoid the 'punch in the stomach' feel, this is different from the drain pain and another source of discomfort. On the cycler, it looks like it is going really fast.

I did have an xray this week to check on the catheter position and doc thinks that is ok. .. So it's like, now what?

How did you guys / gals do it? How did you transition from manual to cycler?

[LutherPDX]

Like I told someone here, recently - there really isn't anything to do, your body eventually gets used to if for most people. I'm sure your nurse has given you tips about changing positions, sitting up or even standing up. Keep trying this. I had terrific pain but now I can sleep through the night while the cycler does it's thing. Give it time, good luck.

[3Kidneys]

First off, I’m guessing you’ve talked to your PD nurse?? Has she adjusted your machine to tidal, or made adjustments to your machine to leave a little fluid in your body as it goes into the next cycle?? AND there may also be something wrong with your machine . You also should be aware when on the cycler you will be laying down, so generally that alone is going to leave some fluid in you.

I do get drain pain, but after working with my PD nurse it is kept at a minimum. Are you dry during the day?? My machine is set on tidal, and when the machine goes into the drain mode, it leaves some fluid in me. Then it fills with additional new fluid. Rarely do I have drain pain between cycles. It is generally at the end of the last cycle if I do. And what I do when I feel it start, I turn my catheter to the off position and either sit or stand up., then open your catheter and let it run. The reason the machine keeps trying to drain is the computer knows how much fluid its put into you and you should get at least that much back out, but if you haven’t gotten it out it’s going to keep draining. But be sure to talk to your PD nurse about possibly adjusting your settings.

[jriegs131]

I had the worst drain pain when I started PD. My PD nurse suggested drinking water before you hook up to your machine. It worked! You'd think having a full bladder would give the catheter less room and cause more pain, but it didn't. Also, what helped a ton was raising my machine. Originally we tried raising it 12 inches higher than my bed. But, in the end, we had to go about 14-16 inches. My machine was set to tidal and I don't do a full drain in the middle of the night anymore - just once when I start and once when I end. Those full drains are painful though. It does eventually get better.

[Hidden]

Just wondering how things are going with your drain pain? I am 48, with PKD, and had my catheter placed on Sep 9 and have to flush every day because of excruciating dry pain. I also have very bad drain pain which makes me very nervous for starting the cycler. We have the Home Choice Pro at the clinic here in London, Ontario, and I understand it can be set to Tidal but still the initial and end drain. I brought up my concerns with the PD nurse and before I have even had my training she says that the cycler may not be for me?! I am what they classify as “small” (5’4, 140lbs) and that I may feel more pain for that reason? So now I am not sure if I should just stick with manual..... or do the training and try the cycler. I’ve had nothing but problems in these first two weeks after my surgery, so PD and me are not friends right now. I really hope this will get better!

[curiousmind2019 in reply to Hidden]

Hi, sorry to hear about ur PD troubles. I didn’t get any better at drain pain after this initial post. I ended up doing manual which is like having an alarm clock every 3-4 hours to have to stop everything and do exchange. I would take ur time in training, u don’t have to rush into cycler training, do try when u r ready . If u r able to get on cycler, it might be better longer term since they can do more exchanges on cycler . It was depends somewhat on whether u r fast or slow transporter. I am slow so it means I need to dwell for a long time anyways and cycler less helpful. Hope u figure out what works for u.