Looking for answer for you

Hi all. I have been picking through all the Topics on the IHD site here and when I find stuff that really makes me unhappy, I ask my nurses.
Here are a few of the things I have got back.

What I sent: They have adjusted my dry weight over 3 times in the past 3 weeks. The tech that sets up the machine likes to pull to much off> I am not the only person who cramps and feel like the ladies across from me if she sets there machine it is most sure of they will get cramps I seen one lady in tears she was hurting so bad. I think it is the techs fault for being trigger happy with the machine

What I asked: Is there a Dialysis Patent's Bill of Right?

If not, shouldn't there be one? If I was treated like this guy, There would be real trouble….there has to be someone to report this to, and if there are what consequences could the patient expect.

What I got back: Every facility has to post the pt rights and resposibilities- the area ESRD Networks may have examples of these on line somewhere- but they are pretty generic

NEXT

What I Sent: I was recently informed I will no longer be receiving carnitor because of bundling. It has helped my neuropathy and blood pressure, I no longer almost pass out during treatment. Do the people who make these decisions ever visit treatment centers? I don't think so. I also read that U.N.O.S. is going to change their criteria for kidney transplants.

What I Asked: I found this on the IHD message board, do you have insight? There are two parts here. I am not sure which the patient would be most interested in…the meds or the changes in criteria.

What I got back: Everything is changing now that meds are in bundle- cheaper more allergic iron might come back in play, less ESA doses- lots of not good things coming the pts way- all so the big boys can still make their huge bonuses.

The people I work with are experts in this field. We fight an up hill battle trying to get the one piece of equipment installed that is meant to provide the patient a GOOD Treatment, and provide the clinic a tool that shows what id happening During and after the time you spend in the chair. Lori Hartwell use to work for us and is our biggest supporter.

I will continue read and see if there are beter answers from my resourse. I am pretty proactive about my Health Care, and if I end up in a chair, I will not be the most loved person by the clinic administrators. If they are going to make money from me, then they are going to damn well earn it.