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Author Topic: Isnt it my decision? a rant...  (Read 4929 times)
RichardMEL
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« Reply #25 on: January 31, 2012, 09:11:38 PM »

I agree with TGL on this doc. What a horrible thing to say "Did I give you permission?" what the...? naughty girl!!! Go to the corner or I'll spank you (oh wait, you might like that  :rofl;). I also agree with DD that you deserve a proper explanation as to why they (the doc/the team) feel you should not attempt pd again - clearly there are/were reasons you stopped/changed to HD those previous times - I know very little about PD so I hesitate to comment further on that aspect, but in general I feel the way you were treated, as you have presented it, was pretty poor. I think he(?) should have put it as "You've been on PD twice before and it hasn't worked out because of X and Y. We feel it probably isn't the best choice for you to attempt it again because of Z" - something like that. I dislike it when medical people say "no you can't" without explaining why. If the reasonong is sound then fine, I will go with their judgement because that's what they're paid to do (and I'm sure in your case it isn't personal or anything) but I despise being treated like I don't need to know, or couldn't understand it, or something.

However GLM I do think you need to go back and think about why PD didn't work out for you those other times - be it the catheter pulling issue, or whatever. On the surface recommending against going back to PD seems to make sense given you've had two goes at it and it hasn't worked out, but as Karen and others suggested this may be through no real fault of your own.

Time to get assertive with this guy I think. I don't mean rude or anything, but just to ask for a reasonable explanation as to why the team thinks you shouldn't try PD again. If the explanation doesn't make sense, ask questions until it does (it's your right!). I find most people are more willing to accept bad news if they understand it in context with an understandable rationale, rather than just a flat "no" -  It's like in my IT job, say someone comes along and says "We want to run this thing on your server" and I could say "no" or I could say "Well, this really isn't a good option because we don't have enough storage space, memory or CPU to meet your requirements" - well, that hopefully would make more sense and they might then move on to "How can we work with you to find something that works" - so yiour next step perhaps should be "Well OK, so PD may not be a good idea.. but I have this financial issue, like many of us do, what can you recommend to me that might make things easier? Is there a closer D unit I can use? What about home hemo? Where's my bloody transplant?!" (well ok, maybe not that last one!!).

I always deal better with these medical types when I feel like I'm part of my own treatment team and being treated with respect as someone who can understand the issues and implications for me, and work with them to make informed decisions. I hope you can get that kind of thing happening too.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
gothiclovemonkey
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« Reply #26 on: January 31, 2012, 09:43:10 PM »

i told him it was mostly finacial reasons that i wanted to try for pd again, due to gas, and im not remembering the exact words i used, but i must have sounded funny, because he laughed? it kinda irritated me, but i was just ...okkkkk? then he left. as usual.
i asked about home hemo today, they dont do that apparently, heck 2 of the 3 people i asked, didnt even know what i was talking about, they said, yes we do pd....  :stressed;
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