They said....Home dialysis

[kitkatz]

So I got a phone call today from the Redlands dialysis center concerning home dialysis.  She asked me what I knew about it and I told her I had been reading on it on line.  She asked me questions and I was able to answer them.  Then...

Some people stand in the way of progress...

So she tells me I have to take five to six weeks off of work because it is a six hour a day training and they do not have any capabilities of training me after my work shift.  I said: Isn't NX stage supposed to be used by people who have a life?  So I am supposed to put my life on hold to do dialysis.  I told her that it was ridiculous to expect me the change my entire life to do the home training.  I asked why can't you do it after my work schedule.  No, no we can't we are not big enough.  Well crap!

I think I am calling NX stage and asking them what I can do about this schedule conflict.

[Black]

... I think I am calling NX stage and asking them what I can do about this schedule conflict.

YES!  Call NxStage. 

The time frame they gave you is outrageous.  Mike's first day of dialysis was his first day training on the NxStage.  He trained for 14 days; I trained for 10.  With your years of experience you will learn very quickly and will probably need only 10 days at most.  I cannot imagine why you would ever have to be there for more than 4 1/2 hours and most days less than 4.

Is there another clinic with a NxStage program near you?

[thegrammalady]

don't put that stick away. i'd ask for an exact explanation of what you will be doing for 6 hours.. bet they can't tell you.

[paris]

Kitkatz. Call Alvin!  Maybe he can pull some strings and get a better answer.  There has to be a better plan than what they are telling you. 

[Aldente]

When I was offered the opportunity to go on home hemodialysis I was given two options:

First, I could do nocturnal hemodialysis which required the use of a full size dialysis machine and water treatment equipment.  This equipment required special plumbing and electrical connections.  Training for that system was six weeks.

Second, I could do daytime home hemodialysis using NxStage System One.  As you already know, this is a very compact and portable machine. With the addition of the Pureflow unit to make dialysate this is still a very compact unit that requires only minimal installation for the Pureflow unit.  Training to use this system for me and my partner was two weeks.

Because your dialysis center mentioned six weeks of training I wonder if there is some confusion as to which modality they are offering.  I would ask to talk with the training person to confirm the training times and the modality they are proposing.

Good luck.

[karen547]

yea a bit off topic here but i have a life and i'm on hemo-dialysis... please think before you write kitkatz and anyone else

[paris]

Kit has been on dialysis for years, mother of 2, and teaches full time.  She has an extremely full life. I think she is looking for a better quality, long term answer.

[del]

Kit get out that BIG stick!!  Tell them to train you.  I think they do have you confused with training for nocturnal on the big machine. It took us 5 weeks to train on that.  We were not at the training 6 hrs a day most days just while we were doing the treatment.  that's when the training was done.  Hubby was on the machine 3.5 - 4 hrs a day.  Once his treatment was finished we were finished training for that day!!

[tamara]

I got trained on nocturnal hemo in three weeks. Depends on how quickly it all sinks in I think

[Gram2Twinz]

There seems to be a great disparity in the length of time required to train for home hemo using the nxstage.  My hubby and I have been  in training for 4 weeks, expecting to finally come home with the machine at the end of next week. The training session length depends upon your dialysis center staff and how familiar with the machine they are. At our center, we are the first to be trained and our training nurse is just learning along with us. So because of that, we have had two weeks at the beginning that were simply to help our trainer become familiar with the machine while it is used with an actual patient. One other delay, was the recommendation by the facility that we have 2 sets of buttonholes established BEFORE we can come home. With only one established set, we realized that another 6 or 8 days of daily use to get the second set of buttonholes established. We had a lot of problems getting that second set established, so our trainer helped us insist that we were only going to use one established set of buttonholes. Now that that issue has been resolved, we are anxious and excited to be home in a few days.
The machine itself is very "user friendly". We have well water, so we will use the bags instead of the Pureflow. So that shortened the length of training time also.  The hard part for us is having to learn about patient care, assessments and basic "nursing duties" that are needed to ensure the best dialysis and healthcare. We are not nurses, hubby has not been in center very long (3 months on HD) and there is alot to learn if you're newbies! The machine is easy, the human part- more of a challenge for us anyway.

Our suggestions before beginning home hemo training with NxStage:
Ask alot of questions about who will be training, what experience do they have with the machine, what type of access is needed, will the trainer come home with the machine, perhaps for a couple of visits to ensure a safe setup and storage of supplies if necessary.
The more informed you are going into training- the shorter the training will be.

[okarol]

Good info Gram2Twinz. I hope you will go to "Introduce Yourself" http://ihatedialysis.com/forum/index.php?board=14.0 and tell us your story!
Thanks.


okarol/moderator

[angela515]

  I hope you get some answers hun... you deserve to do it on YOUR time.. and they should be able to work around your schedule.

[goofynina]

Dont you give up Kit, and remember, we are behind you all the way, i am sure the last thing they want is the members of IHD to come up in there and start a riot 

[kitkatz]

yea a bit off topic here but i have a life and i'm on hemo-dialysis... please think before you write kitkatz and anyone else

Ummm, I do not understand here.  I have been on dialysis nine years and would like to make some changes.  This has been in center hemodialysis, along with the full work schedule teaching special education 6th graders, in addition to being a mother of two college age kids and a wife of 23 years.  I was thinking when I wrote what I was saying.  I have had a life on in center hemodialysis for NINE years. and would like to make some positive changes in it!  Catch up with me, then we will see how happy you are to spend so much time out of your life in a dialysis chair with no say so over when you go on and how it is done.  I am tired of this and was asking for advice!

Kit has been on dialysis for years, mother of 2, and teaches full time.  She has an extremely full life. I think she is looking for a better quality, long term answer.

Right on the nose. That is exactly what I was trying to say!

[jbeany]

6 weeks is ridiculous.  And so is 6 hours a day for training.  Most of my training days started at 8, and I was usually gone by noon.  The training took two weeks, Monday thru Friday.  The second Friday was my first day at home.  The biggest issue was sticking needles, and if I had it to do over, I would have started learning to stick myself long before training, so that there would have been no issue with learning that at all during the Nxstage training.  If  your hubby is going to do your needles, he can learn before training as well - he can start learning while you are still on in-center.

You go girl!  I know you can make this work.

[JerseyGirl]

While I empathize with you I'll bet part of the reason is that the training staff work M - F 9 to 5.  Do you suggest they change their schedule for you? They are offering you training but apparently not on your schedule.  Is that wrong? 

[Joe Paul]

While I empathize with you I'll bet part of the reason is that the training staff work M - F 9 to 5.  Do you suggest they change their schedule for you? They are offering you training but apparently not on your schedule.  Is that wrong? 

Thats just mean

[Romona]

don't put that stick away. i'd ask for an exact explanation of what you will be doing for 6 hours.. bet they can't tell you.

They must think you are independently wealthy and can afford to take time off. It is so frustrating to live in a nine to five world. It would be nice to be able to do things after working hours. It would be less of a hardship (not much less) to be able to train after your school day has ended.  You are certainly not a newbie to dialysis, I bet you'd catch on very quickly.

Stupid question here, can you do it during the summer? It seems so cruel to make you wait. 

[KR Cincy]

Six weeks does seek like a long time, but they always overestimate how long it will take. They told us 4-6 weeks and we finished in 12 days (which would have entailed over 2 weeks of vacation had I been back at work yet.)

It's worth making some calls to see if there are alternates...in the end, it'll be worth it but I know it makes for some hard decisions now.

[paris]

This might not be my place to say----BUT, Kitkatz has been on a huge emotional rollercoaster for the past few months.   Take a few moments to read about who she is and what she is talking about before you reply.  The last thing she needs is for answers that aren't helpful or supportive.  We all want to offer help, but I think we need to be responsible in our responses. Those that have been trained on Nxstage probably can give the best insight.   I just want to tell Kitkatz that I am so sorry for the disappointments you have dealt with lately.  I hope a solution can be found and you can get the Nxstage training.   Romona had a good idea, even though it is months away till summer break.    Grammalady - I think you can feel Kitkatz pain and frustration. 

Mods--if this isn't a post you are comfortable with---please feel free to delete.  I just wanted Kitkatz to know I have her back!!

[Wattle]

This might not be my place to say----BUT, Kitkatz has been on a huge emotional rollercoaster for the past few months.   Take a few moments to read about who she is and what she is talking about before you reply.  The last thing she needs is for answers that aren't helpful or supportive.  We all want to offer help, but I think we need to be responsible in our responses. Those that have been trained on Nxstage probably can give the best insight.   I just want to tell Kitkatz that I am so sorry for the disappointments you have dealt with lately.  I hope a solution can be found and you can get the Nxstage training.   Romona had a good idea, even though it is months away till summer break.    Grammalady - I think you can feel Kitkatz pain and frustration. 

Mods--if this isn't a post you are comfortable with---please feel free to delete.  I just wanted Kitkatz to know I have her back!!

I agree with Paris. Kitkaz has a life - a VERY full and demanding one. Don't throw stones unless you have walked in her shoes for NINE years.

We hear you Kit. Hang in there.   

[kitkatz]

Thanks folks.  I am trying to keep it together and not go off my rocker.

[Black]

While I empathize with you I'll bet part of the reason is that the training staff work M - F 9 to 5.  Do you suggest they change their schedule for you? ...

Yes, they should.  Kat might be able to rearrange her schedule to be at the center by 2 PM  for a couple of weeks, and they could rearrange their schedule to have the training nurse be there for her from 2 to 5:30 or 6:00 for a couple of weeks, until she is trained.  There is no reason for her to have to train longer than that considering the intelligence in her posts and her many years of experience with dialysis.

... They are offering you training but apparently not on your schedule. Is that wrong?

Yep, sure is wrong.  Kat has worked very hard to remain in the work force and keep some semblance of a "normal" life, the least they could do for her is to schedule training around her work for a couple of weeks.  Considering the thousands of dollars she will be saving the clinic and Medicare by moving to home dialysis, they should be eager to do whatever she needs.

[kruep]

As one who was training patients on NxStage what you were told is outragous!!!.  You should be at the clinic for 3-4 hours a day.  It sounds like they are not wanting to work.  Your best bet would be to get a hold of the Regional director, not sure which company you are working with or which state.  If it is DaVita, if you will let me know which state I can probably put you in touch with the right person.  At my clinic we always worked with the patients, I even trained over the weekend if it helped the patient.
Let me know if I can help.

kruep

[skyedogrocks]

6 weeks is ridiculous, it definitely does not take that long.  You are a smart woman, I'm know you will catch on right away.  It took us 3 weeks during a normal dialysis session.  We would get there at 7:00 and done by 11:00 am.  Why the heck would you need to be there 6 hours?

Kit, do you stick yourself?  If not, I would have your center start to show you, that will definitely help with time!

Lastly, our nurse works with the schedule of all the people she trained.  Call NxStage and see what they can do for you.  They really are nice and willing to help you. 

Stick to your guns and make them work with you!