I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: chuckt67 on November 07, 2012, 09:02:02 AM
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My mother had a 50% overfill, 6 straight days of upperchest/shoulder pain which on the last day i discovered a slit (cut) on the transfer tube, and the beginning of a quick decline and end of peritoneal treatment. The nepherologist wasn't even going to refer us to hemo because she perceived my mothet as having access issues. I got het Primary to do the referal and she's getting hemo, just in time. The graft surgeon did some modifying without telling us. We only found out because it clotted and another surgeon fixed it, Also there's been a piece of cloth or twine protruding from a small wound that has stayed infected and won't heal. It seems to be anchored and cannnot be pulled out. I don't know if it's from the graft placement procedure or the unclotting procedure. We saw the graft surgeon a few days after the declotting. He started off by saying 'this is a little bit emabarrasing... Now, my mothers hand has been freezing and painful all the time, especially during dialysis. We were told by her new kidney doctor that this was from 'stealing' (to much flow in the graft). While talking with the graft surgeon, he started to explain his modification, but he said something about PD. I interupted him and said we were never told why the PD failed. He said that in our file the PD physician wrote the failure was because we didn't follow the treatment plan. This crushed us. Then he said he wanted to go back in and 'Open Up' the graft flow. Because of what we were told about the 'stealing' we said we weren't sure if opening the flow would be a good plan since she can barely tolerate the hand pain as it is. We assume he didn't like our reply, since he kind of dropped his clipboard and threw his hands halfway up in the same gesture, said 'Well, i guess you're going to have to talk to your nephrologist about it, then.' Then he stood up and walked out, promting my mother to look at me and say, surprisingly for the first time, 'I'm going to die, aren't I'. I had thought the last few seconds were disturbingly humorous until she said that. To wrap it up, a few days later I'm looking at her online medical record from the provider, and i notice the removed the 'stage 5' from the renal disease diagnosis from 2009, making me angry but i'm used to it. They are always trying to hide or change something, but then at the bottom of the list i see a recent entry for 'Peritoneal Dialysis Catheter Disorder'. I believe that at least it's a confirmation that the failure is not our fault. Any clue's as to what 'Peritoneal Dialysis Catheter Disorder' means or has anyone every heard the term used?
ChuckT
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I think it is Latin for " I don't know "
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I think it is Latin for " I don't know "
Those crazy doctors and their Big School Latin, what fun.
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Steele syndrome can be really painful.. I have it myself, but it doesn't cause me pain. I have stiffness, and my hand gets cold and turnsa greyish blue, but only while I'm on dialysis. In my experience, if the doctors can find a way to blame you for the problem, they will. I was blamed for the failure of both my kidneys, plus the peritonitis infection that ended my PD treatment, and left me with no choice to go to hemo.
if there was a cut in the tubing, that's not yours or your mother's fault, unless one of you made the cut. That sounds more like an issue with the tubing
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I hope and pray things improve for your mother.