NxStage at home VERSUS Fresinsus at Home - NEED INFO

[Lindia]

Hubby has been trying to get listed since May here in Wichita, Ks to take the NxStage training.   We have been LIED TO,  several times, about when he will receive training.   First we were told there was "NO WAITING LIST" and when he was sticking himself, we could train.   In our conference meeting, we made it very clear that training to go home was our number one priority.    We heard from the social worker about 3 weeks ago that the center, and our kidney doctor was mistaken -- there is a waiting list for training, and we won't be able to get in for months.     So, hubby called the training center himself, and was told that there is a long list - and its TO BAD that our kidney doctor didn't get him on the list earlier.   I am beyond MAD --  we sent a letter to his kidney doctor. asking him if there was some paperwork mixup, as his office told us paperwork had been submitted.   And to top it off -  the SAME WOMAN called from the training center today, with a "whole new story"  about how no one been added to the list in a long time, but we are now on the list !!!   and then she asked to speak to me ---  she would have no reason to know anything about me,  if they all weren't conferring and trying to get their stories straight - and the staff and Dr. know I am the type to KICK BUTT !!!

Sorry for the long intro to my question -- but I want to go somewhere other than DaVita, if my husband can get at home quality care with Fresinius -   one of the techs at our center said that Fresinius now has a machine that you can travel with ?    Is that correct ?      Any information would be appreciated.      Oh -  and how do you find out who the best nephrologist in town is - because we need to CHANGE .

[kporter85db]

At our clinic here in Springfield, MO, the Fresenius Hemo machine is not portable, but they do offer the Nxstage to patients also.

Good Luck

[Lindia]

Thanks - kporter -  I am so mad and frustrated right now.   

[Lindia]

Does anyone know if the Fresinius takes more water, special plumbing and special wiring ??   If so,  this isn't a problem, as we own our home, and I would like to weigh the differences between the two dialysis machines.

[del]

My husband uses a fresinius machine (we are in Canada and no nxstage here) I know of no fresinius that is portable or we would be fighting to get tit!! You do need special plumbing but it is just a hookup like you use for a washing machine and you need to have the dialysis machine and the water purifier on different electrical circuits.  Hubby did his pown plumbing and electrical.

[Lindia]

Thanks Del -   How much water does your machine use ? ?

[Desert Dancer]

Thanks Del -   How much water does your machine use ? ?

Hi, Lindia 

This came up a few months ago and I replied with my experiences with the Baby K:

http://ihatedialysis.com/forum/index.php?topic=22791.msg373038#msg373038

I hope that's helpful to you.

Can you perhaps find another clinic in your area that DOESN'T have a waiting list? Home Dialysis Central lists centers with home training programs:

http://locater.homedialysis.org/

It might be worth looking into, especially if your current clinic is giving you the runaround.

[Lindia]

Thanks Desert Dancer -  Why did you choose the Baby K ??  --  I see that it may offer more control over your treatments, and something was said about "one needle" dialysis ?   

[Lindia]

 

[Desert Dancer]

Thanks Desert Dancer -  Why did you choose the Baby K ??  --  I see that it may offer more control over your treatments, and something was said about "one needle" dialysis ?   

Primarily because I wanted to do nocturnal and that was the only machine offered to me for that modality.

Don't know anything about 'one needle' dialysis - I use two!

[Genlando]

I'm a Fresenius patient, and I got the same runaround when I told them that I wanted to go with the NxStage.  The home dialysis group in my town only dealt with PD, so nobody was trained on NxStage.  They delayed my training for almost 8 months, with no answer as to why.

I finally broke up the stalemate in March of this year.  I got a call from my "Case-Nurse".  That's the person that calls you every month to ask you how things were going.  I told her that I was seriously thinking about terminating my HD treatments, because I felt that my quality of live had drastically deteriorated with the in-center HD.  She freaked out!  She told me to try to hold out for a little while, and that she would follow up with the people in my center.  That was a Friday afternoon.

Evidently, this person has some clout.  The following Tuesday, the receptionist at my HD clinic stopped me as I came in for treatment, and told me that they wanted to speak with me in a conference room.  The HD Center Director, the Home Dialysis Director and the Technical Services Director were in the conference room.  They apologized profusely for the delay in my training.  They assured me that they would get some of the staff trained on the NxStage, and then get me started on the system.  My wife and I started NxStage training six weeks later.

I would definitely recommend that you bring this up with your Case-Nurse, or whoever it is that calls you every month.  As I said before, they must have a lot of clout at Fresenius, because they've solved every problem that I've ever had almost instantly.  They're a good resource to cut through the corporate BS or procrastination that you may encounter when dealing with people at your center.  Getting started on NxStage is just one of several issues that she has helped me with.

BTW, although the FDA hasn't officially approved the NxStage for nocturnal HD, there are many NxStage users that are doing nocturnal on the NxStage.  I'm considering this modality myself.

[lmunchkin]

Genlando, NxStage offers "Extended Dialysis" instead of Nocturnal.  I would do the extended but can't because of my work.  Check into it, but remember FDA has not approved Nocturnal on NxStage, but you can have extended treatments!  That is my understanding of it!

lmunchkin

[Lindia]

I'm a Fresenius patient, and I got the same runaround when I told them that I wanted to go with the NxStage.  The home dialysis group in my town only dealt with PD, so nobody was trained on NxStage.  They delayed my training for almost 8 months, with no answer as to why.

I finally broke up the stalemate in March of this year.  I got a call from my "Case-Nurse".  That's the person that calls you every month to ask you how things were going.  I told her that I was seriously thinking about terminating my HD treatments, because I felt that my quality of live had drastically deteriorated with the in-center HD.  She freaked out!  She told me to try to hold out for a little while, and that she would follow up with the people in my center.  That was a Friday afternoon. 



Hi Genlando -  We don't seem to have a "case nurse"  My Hubby has been on in-center since May.  We do have private insurance, but haven't heard from them.   I think there  are a lot more people training on PD, and they only have one NxStage in town to train on (if what I'm being told is the truth - I don't know what to believe anymore)   This is the info I'm geting from the DaVita people at hubby's DaVita center.    Perhaps we should call Fresenius and see if they are training anyone on the NxStage.   Did you have a NxStage center in your town ?     Can I just say --  I HATE getting the RUNAROUND  !      Its just terrible that you got it for 8 MONTHS !

[Lindia]

Sorry Genlando --- still haven't figured out how to use the "quote" function very well ...   

[Genlando]

Lindia,

If your husband started D with Fresenius a couple of months ago, you've probably gotten phone calls from somebody talking about "Right-Start."  This was where somebody regularly called and discussed the basics of doing HD.  The course is pretty basic--talking about foods to avoid, the importance of not missing treatments, etc. 

The nurse that did the "Right-Start" training should be calling you once a month thereafter.  Did your husband do the Right-Start training?

[kporter85db]

Genlandio, Lindia's husband  is currently going to a Davita Center.

[Lindia]

Thanks KPorter and Genlando --   all this information from people that have been thru this is really helping.  Its all kinda overwhelming !

[lmunchkin]

I bet this is all overwhelming to you, Linda!  Just settle down and take it slow!  As long as hubby is being D everything will work out!  Don't blame you for wanting the home D. especially with NxStage.  Take your time  with learning it all, there is no big hurry.  Soon you both will be home doing it and loving the time you spend together!

Iam serious, when I say that NxStage has really brought us closer together than any other Modality!  We are sooooo greatful for this "kick butt" little machine!  When I first trained on NxStage, I was like all nervous and I even told my trainer that I just can't do this, that it was too much!  You know what he told me? After the first week, he said He had a site he wanted me to check out and read, and then let him know!  It was IHD, this site.  I read all the uncertainty in Nxstage and found some who had the same fears as I!!!!!

Went back next day and said "okay man, let's do this".  When we finally got home to do it, it was just a work in progress.  Still nervous, but I was determined!  Now I got to tell you, I am not an educated person!  Never applied myself in school, I found it quite "NOT FUN".  I only graduated from school as to not be an embarrassement to my family.  Looking back, Im so glad I did graduate and wished I had applied myself alot more.  Well you live and learn, but back to my point!  If I can learn nxstage, You can too!

Its been over a year now, and I am comfortable with NxStage and my decision making!  My husband is happier, Im happier and his doctors (all of them) are happy, especially him not being in the hospital everytime!  We are definately Blessed!

Yea we so enjoy doing NxStage at home.  I know PD is a good modality, but I like this NxStage much better!  It works better for us and our lifestyle.  Plus, I like Cuddleling with my Man!  Teeeheee!!!!!

lmunchkin     

P.S. We act like teenagers again, we are so silly that way!

[Lindia]

Thanks lmunchkin -  I really need to think about what you said, and try to settle down.  Its really hard to handle that he should have been on the training list 3 months ago, and everyone at the clinic and his nephrologist office dropped the ball. 

I'm an easy going, noncombative person most of the time -  but when it comes to "Health Issues"  I am the opposite --  I don't want to have regrets down the road,  and I will do anything and everything to protect the people I love.   I usually go with him on Saturdays, but I think I will take the next one off -  I almost came unglued last Saturday, they were really upsetting me,  wanting to pull off more than he needed - they keep lowering and lowering his dry weight, and that is just BULL !   He's started cutting back on what he eats, so as not to go above his new "dry weight"  so, today, they lowered it more...    If I go in this week, I'm pretty sure that I would yell at them or pitch a crying fit ---    I know they call dialysis -  the BIG D -  but its also starting to mean "BIG DRAMA" to me - and I hate it.