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Author Topic: Help I have drain pain and new to PD  (Read 1152 times)
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« on: May 15, 2018, 05:25:37 AM »

Hi Iím new to this forum but I know I will be using it alot. So Iím 16 and my kidney is only working at 8% so Iím currently on PD for the second time in my life. I was on PD from 8 months old to 4 when I got my transplant. I also went on hemodialysis for 2 months when I got peritonitis from biting my catheter when I was 2. So when I was a baby I was on the cycler but when I was at clinic during training in April when it was time to use the cycler and when it began to drain me I had terrible unbearable pain in my groin and rectum area specifically my testicles penis penis head and my bladder muscles just contracted all of a sudden. So we decided to do manual or CAPD and itís going great in my opinion. I donít get drain pain unless itís almost empty or absolutely empty. So why do I have drain pain and what can I do to fix it my PD nurse says itís normal in adoscelene boys and in 2 weeks it should be fine. But on Monday when we tried the cycler again at home I was empty so the cycler was trying to suck me dry and I just canít stand the pain so thatís it. Hopefully I can get a kidney soon and my life will be back to normal.
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Posts: 4863

When all else fails run in circles, shout loudly

« Reply #1 on: May 15, 2018, 09:00:51 AM »

Hi Shon, I'm sorry I can't give you an answer, but just wanted to wish you well, and I'm sure someone will give you some advice soon.
Also I wanted to say that IF PD stays painful, don't be scared of 'giving Hemo a go'. With button holes and at home, it's nearly as independent and painless as PD


Love, Cas

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
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« Reply #2 on: May 15, 2018, 10:12:25 AM »

The PD cycler can be set up to leave a small amount of fluid in you so you don't get sucked dry.  Ask about tidal therapy.  And good luck.  You do get used to some features that may cause discomfort in the beginning.

Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
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Frozen in Alaska

« Reply #3 on: May 15, 2018, 01:26:24 PM »

I had sever pain at times in the beginning.  It did go away after a few weeks.  One thing I was told to try was make sure I was perfectly still during the initial drain.  It will keep trying to drain if you are moving around.  This takes about 9 seconds. At the same time I could control how hard the machine "sucked" by almost closing the catheter when the pain started and then opening it some when the pain went down.  It will get better.  Good luck
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« Reply #4 on: May 15, 2018, 03:02:59 PM »

Hi I'm new to PD. Unfortunately I get drain pain as well as constant pain when I'm dry during the day. I found with the new Amia machine I can close the catheter a little to reduce pain and a notification will appear saying "Slow Drain"  if it remains "Slow Drain" then it will skip and automatically go to the fill cycle. Im on Tidal for the rest of the night. Then for the last drain I try to get up in time to stop the treatment and leave 300-500ml inside me for the daytime. I don't know how the other cyclers work.
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