types of Dialysis.....

[tyefly]

   Well I gave notice to my center that I was leaving and going to another center to start training with nxstage....   I was shock.....  two of the techs didn't even know what that was....   some of the other patients that I sit by said they had never heard of doing it at home....one women who has been on D for 7 years and a couple of others.....  I was shocked.... don't they tell people......  that was last night....   Now  today I was thinking .... I have been going to the center for three months   and not once did anyone mention to me anything about doing home hemo.....  sure  the social workers  ask me if I was looking into transplants  but nothing about homehemo.....    So now I am thinking about how many people are out there in centers that don't even know about nxstage and homehemo......   

[YLGuy]

My first center told me all about it and in the short time I was there they had demo's in the lobby.  The center I go to now has never mentioned it and I have been there longer.

[willowtreewren]

Our center already had some folks doing NxStage, but Carl had brought it up with his neph prior to going on Dialysis. He knew about it because his sister was already using NxStage.

Not everyone can choose to do home hemo, but if they don't even know that it is an option, that is very sad.

 

[tyefly]

  There may be some politics involved......  not sure.....   I had to change clinics (and drive alot further.....)to be able to get the training with nxstage.....  The clinic that I am current going to is a fresenius and they use those K machines.....  So I am thinking if they were to tell their people about  home hemo....then they would be talking about another type of machine.....   and people who are interested would have to leave that clinic and go somewhere else....     So   It is sad...that people can not be told  about all types of dialysis  independently  of where they go......   I think about the amount of clinics out there that are Fresenius and the Davita clinics.... neither one of them use the nxstage.....  anyway...    its is interesting....maybe someone else knows more.....

[del]

tyefly the sad part about it is a lot of the techs, nurses, family doctors have never heard of home hemo.  When you say you do dialysis at home they just automatically say you do PD?  nxstage is not available in Canada so we have to use a big machine at home.  It is not portable like nxstage.  We knew very little about home hemo and nothing about nocturnal when we started asking questions a few years ago.  I really think that during pre dialysis sessions people are given all the options available to them and not be fed wrong information from techs and nurses who sometimes don't know what they are talking about. 

Good luck with the  Nxstage. Home dialysis is the best!!  you set your own schedule!!

[Stoday]

Here in the UK the National Health Service covers the cost of dialysis no matter if it be in center or in the home. Home hemo is somewhat cheaper than in center, so the NHS perceives a benefit from home hemo. I get all the information and support I need so that I can choose to have home hemo if I want.

[Malibu]

I read about it on the internet!     Long before MM agreed to do dialysis I knew all about NxStage and PD, I thought we would do PD actually but low albumine put the kibosh on that plan.  I'm a pushy broad -- MM was told he was doing it at home!  Seriously though, I did it because I knew he would not sit there in a center...he would just come home and refuse to ever to back.  Good thing he occasionally listens to his wife!

[petey]

Don't know what it's like other places, but here (southeastern North Carolina) and with Marvin's "home" clinic (DaVita), there was NEVER any mention of any other type of dialysis other than in-center hemo.  Through my research, I learned about PD, and then I pushed Marvin's neph to let us try that.  We tried.  Didn't work.  Through my research, I learned about home hemo, and I pushed pretty damn hard for that!  We tried that -- and have been doing it for 2 and a half years (greatest thing in the world to us).

No nurses, no techs, no nephs ever mentioned PD or home hemo!  At first, we didn't know there were any options at all (young, naive children that we were).  We still get this response from nurses and doctors -- "You do dialysis at home?  So, you have a catheter in your stomach?"  ummmmm, what part of home HEMO didn't you understand???  One time, Marvin had to actually pull down his pants and SHOW an ER doctor that he didn't have a cath in the stomach before the doc would believe we were telling the truth.  Then we hear, "So you have a nurse come out to your home every day for your treatments?"  ummmmm, no ....

Also, at Duke (Marvin's main hospital), his neph has a standing order that I am allowed on the dialysis unit to cannulate when he's hospitalized, and I still have nephs and nurses standing around to watch and ask questions!!

We had to switch clinics, too, to do the NxStage training.  Marvin's "home" clinic was only 10 miles away, but to train for NxStage, we had to transfer to a clinic 60 miles away.  It was hell for the three weeks of training, but it's okay now that we only go to the clinic one day out of the month.

They just don't tell you here.  And, sometimes, they act like it pisses them off when you find out the other options on your own and then ask for them!!  Go figure!

[Rerun]

People at my center don't talk to each other.  We are far enough apart to not talk and so we don't learn anything from each other.  There are patients who know NOTHING about the dialysis they are on let alone different types.  Our Social Worker just gives them old handouts.  Our dietition is very good though.  She gets good information out.

I think each center should have support groups who get together on Sundays (when they are closed) to ask and answer questions.

The center and docs would HATE that.  OMG the patients might learn something.

[petey]

But, it has been our experience when Marvin was in-center that there are some patients who DON'T want to know their options, information, other patients' experiences, or anything else related to dialysis.  They just want to go, plop down in the chair, stick out their arm, sleep, and then leave.  And, if that's what they want, that's fine with me.  That, however, is not satisfactory for us.

[Hanify]

Thank God for IHD

[jennyc]

Here in the UK the National Health Service covers the cost of dialysis no matter if it be in center or in the home. Home hemo is somewhat cheaper than in center, so the NHS perceives a benefit from home hemo. I get all the information and support I need so that I can choose to have home hemo if I want.

Same for Oz, but even here there aren't that many who chose to do home hemo, even though here you don't need a home carer. They actually don't let a carer go to training, you must be independant to do home hemo. Hubby is only allowed to stay for the last day or so to become familiar with the machine. (the training nurse has never had problems with crashing she says becuase we run the machine at slower speeds and take of less fluid than people in center becuase its over a longer period of time, apparently the speed is less than in the US as well).

I can't wait to get set up at home. Like Canada, NxStage isn't in Australia so i'm going to get my Dr to put my name on a waiting list. I'm too young to be tied to the house all the time. Medicare is great but we are kind of shackled to what the beauracats decide. Mostly it's fine but sometimes they need a kick in the but to move forward in the best direction for the benefit of patients