pd tube problems

hello just wondering if anybody is having the same problems as me i had my pd tube fitted in september of 2016 i started off with a machine but it was very painfull filling and draining so i put up with it for as long as i could and then i had to stop using the machine. i now do the bag exchange 4 times a day all was ok for a few weeks then i found i was not draining properly so my renal specialist sent me for an xray and found my pd tube had moved upto the top of my abdomen so i had to have an operation on new years eve and the surgeon decided to fit a new pd tube and sew it in place this time so it can not move again.all was going well fast draining and filling until 2 weeks ago when i started leaking fluid out of my exit site i was asked to attend leicester hospital day case unit they said i had pulled the stitches inside resulting in letting the fluid come out out of the exit site and to rest it for upto 6 weeks .after a week i was asked to attend lincoln renal unit to put a bit of fluid down my pd tube to flush it and it leaked strait away so now im being told they think there is a hole in the tube about 3cm inside of me i had to attend leicester general as the surgeon needed to check this for his self and he now agrees with lincoln so i have to now have another operation to have a new pd tube fitted within the next week so im now thinking is it me just being unlucky or has this happened to anyone else.

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  • Hello dave21gsl,

    I'm sorry that you goes through this. I knew how it was because I went through this and had three time surgeries. I'm using machine treatment goes well about month then stared horrible pain and its sacking my inside out. They switched manually first filling and draining works two weeks then horrible pian again. I had second surgery said my tubing was around up with intestines but second tubing has same issue, after all ( both surgery went same surgeon) I decided to get second opinion from different Hospital, yes I did third surgery and doctor said my tubing was too long and too deep that why was such pian. This time I'm happy that treatment going very well, only last draining has litter pian.

    My experience that you should get second opinion and to ask your nurses or other patients, don't hug one surgeon. Hopefully it is not too late, I have very bad experience for pd catheter wanted to express but because of language, expecial English writing, if I make you confused please excuse me. I'm praying for you🙏🙏🙏

    Good Luck

  • thanks for your reply im having my operation on friday and i will be asking the question about the pipe being in to deep thanks again dave.

  • Hi Dave, sorry to hear you have been having problems.

    I started CAPD 14 months ago and it transformed my quality of life which is as "Normal" as can be and still work full time with a very active life.

    In September last year I accidentally damaged my catheter and ended up with peritonitis, treated ok but kept recurring, the third time was after Christmas, my PD team decided that my catheter had been colonised with the infection so I went in for an emergency procedure to remove the catheter.

    My gfr is 8% so I am being monitored every week to check, the alternative would be for heamo for a few weeks.

    I will be having a new catheter in approx 2-3 weeks time after my peritoneum has "rested"

    It has been great today to have a real drenching shower again so I intend to make the most of it till the new catheter is fitted.

    Can't wait to get it done as I feel so much better when on CAPD.

    I have had little pain or discomfort from my catheter except for the peritonitis.

    Longing to be back on the transplant list.

    I have been for one attempt at transplant but after 10 hours was a no go as the donor organs could not be retrieved in time.

    The risk of catheter problems is relatively low and the gains far outway the negatives, like me sounds like you were just unlucky, have faith be positive and I am sure all will be good.

    By the way I am70 and am thankful for CAPD it has transformed my life.

    Best wishes

    Philip

  • thanks philip the date for my operation has come through today im being operated on friday at leicester general and i carnt wait to get back in the shower not been able to shower since before christmas good luck with your operation.

  • Hello Dave - really sorry to hear this. Mu husband has a PD catheter but has not had any problems with it - we have plenty of problems with the dialysis itself, but not the tube. Sounds like you have been unfortunate with this one. Do persevere with it - it sounds as if this has just been a bad start for you. When my husband had his PD catheter inserted, the hospital forgot to give him pain relief, and so he ended up having to have a urinary catheter as well which was totally unnecessary, and gave him something else to cope with. So these mistakes do happen. Wishing you all the best Jennie

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