CAPD and PAIN

[GeoffJ]

Hi

My First post here, sorry if I screw up.

I had a standard CAPD line inserted and then all training and a Baxter machine to receive APD. But the line never worked very well. The doctors decided that it was because I am so tall (6'2" is not that unusual?) Anyway the faulty line was removed and a new line inserted - it now runs down to void around my bladder (Douglas Void). So it is much lower than normal in my abdomen.

I have been trying the use the new line for 1 week. The line works perfectly in terms of filling and draining, so the doctors "were not wrong" about the previous line. However, there are two related problems with draining

a) When the machine carries out a tidal-drain (currently 4 times per night) machine I have discomfort that wakes me up. I have to sit on the edge of the bed until the drain is complete.

b) whenever the machine does a full-drain" I undergo around 60 seconds of acute pain as it takes the last few milliliters. I guess the suction is on my surface of my bladder (this really hurts)

Needless to say I have spoken to my the CAPD nurses. They have agreed to tweak the setup from 7 cycles done to 5 so I can get some sleep (this better, but hardly ideal). They suggest I take paracetamol and the tell me the full during full-drain will subside after 2 weeks.

I guess I am after some reassurance from anyone else that has this setup?

That us line into the void around the bladder, and the using APD. Does it all settle down after around 14 days? Do you get a night sleeps with no pain?

Regards

Geoff

[mhawk123]

Hello there Geoff,

I am sorry to hear of this with your Baxter APD and I hope you will not have to change to HD. Let us first deal with the pain. I had found that I need to empty my bowels more readily to avoid some of this. I had a strict bowel regimen of Colace, and Primose OIL. Also, you maybe overfilling which can also cause the pain. Good luck with this overbearing problem and I hope this resolves.

[GeoffJ in reply to mhawk123]

Thanks Mhawk123. I certainly go to the toilet enough....

I have attended my clinic today and the nurses are very concerned.

The best proposal appears to be to switch from the Baxter machine to another (something beginning with F).

This will be very expensive - retraining for me, a machine swap and ALL the Baxter suppliers I have will need to be binned.

They have given me until Wed to see if the pain subsides - if it does not then we swap machines and sod the expense.

😱

[mhawk123 in reply to GeoffJ]

I switch from Baxter to Fresenius machine with some resolution. GOOD LUCK with all. Perhaps a Kidney transplant maybe on the way?

[Bunkin]

I had problems with it too. I did go through a period of time where it didn’t hurt so there is hope