I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: kitkatz on November 16, 2007, 09:50:32 PM
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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.
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... 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?
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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.
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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.
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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.
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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
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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.
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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!!
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I got trained on nocturnal hemo in three weeks. Depends on how quickly it all sinks in I think
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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.
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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
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:grouphug; 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.
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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 :boxing;
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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!
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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.
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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?
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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
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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. :cuddle;
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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.
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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!! :cuddle;
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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!! :cuddle;
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. :cuddle;
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Thanks folks. I am trying to keep it together and not go off my rocker.
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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.
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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
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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!
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I'll add my 2 cents worth...
Kit - first let me chime in on how encouraging your 9 years have been. I whole heartedly applaud your next step. Now just getting there....
With my training, the time-line was like this:
1. Learn how to self cannualte in unit 2 months before actual training. (with hopes of establishing buttonholes)
2. Start in-center training - originally we had budgeted for two weeks but because of my access issues and the fact that I dialyze solo - we extended my training to a total of 16 business days.
first week - familiarity with system. (I just watched)
second week - I did all of my set-up and run
third week - alone in room dialyzing.
My training started on a Tuesday at 9am. Then the training was integrated into a dialysis run. (I dialyze roughly 2:45) if you add 40 mins for my take off. (I always had some sort of snafu) That had me leaving the unit by 2pm on most days. (By the end of the training period, I was out the door by 1:30pm)
So, yes, as a teacher your schedule would be screwed up. Any chance that they can teach you over the x-mas holidays? or maybe Easter Break? I know the feeling of "I want it now." - (I am an instant gratification junkie) but for me, the months that I waited to start NxStage really flew by. (in hindsight)
I think that where there is a will there is a way and you certainly have the will. (just look at Epoman, Black and Adam W as examples - their proactive stance really worked out for them)
Best of luck and congrats on your Wedding Anniversary as well!
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Of all people, the clinic dietician is going to look into home dialysis for me. There is light at the end of this long tunnel, and it may not be an oncoming train. Fresenius is going to open a new center in Loma linda and will have home dialysis unit there. I may be able to train there when it is ready to go. They will probably work with my weird schedule. She is also going to see what the hell is going on! Hurray!
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:bandance; Good Luck!
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Finally, some good news. I know you will find a way to do this, Kitkatz. You are such a fighter. I am so glad someone is listening to you and trying to find a solution. :cuddle;
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Hoping you get the training you need on your time :thumbup;
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Of all people, the clinic dietitian is going to look into home dialysis for me. There is light at the end of this long tunnel, and it may not be an oncoming train. Fresenius is going to open a new center in Loma Linda and will have home dialysis unit there. I may be able to train there when it is ready to go. They will probably work with my weird schedule. She is also going to see what the hell is going on! Hurray!
Be sure to learn all you can about the Fresenius machines which are used by their home dialysis patients. You may want to try another clinic which will train on the NxStage.
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They are planning to use NX stage I think with me.
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Oh Katz Nxstage is wonderful!! I am almost through my second month with it and it is like a miracle. I feel so much better already. :bandance;
Earlinda
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Holy moly it's great to see you Earlinda. :cuddle;
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I threw that into the mix to open up a discussion - glad to see it was civil! Point is us dialysis providers have lives too - kids, etc. It is not unreasonable to stay at work till 6PM - but evenings can be alittle hard on us. It is a dilemma either way. I wasn't trying to be mean either, just realistic. Put the shoe on the other foot - how willing would you be to change your work schedule? We have families too.
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It took us a bit longer to do the NxStage training as my hubby had surgery after the first week of training, then we were back for another week and the center changed ownership so we had to wait another week until all of the paperwork was done. Think we actually took 16 days (from 10-1 each day). When do you dialyze, we did the training as my hubby was dialyzing.
I would see if you could get the training book from NxStage (I think it is even posted somewhere on one of the users groups). You could study the guide and get the procedures down before you even started 'training'. If you learn the cannulation techniques from your techs or nurses at your center now, you will be way ahead of the game. That was the hardest part for us. The machine isn't hard at all. You can do it in you sleep once you get used to it.
Have read your posts, wishing you the very best in your pursuit!! Keep up the faith! You can do it...
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I threw that into the mix to open up a discussion - glad to see it was civil! Point is us dialysis providers have lives too - kids, etc. It is not unreasonable to stay at work till 6PM - but evenings can be alittle hard on us. It is a dilemma either way. I wasn't trying to be mean either, just realistic. Put the shoe on the other foot - how willing would you be to change your work schedule? We have families too.
Dialysis workers -true- have families too- but you GET PAID MONEY to be there, and plenty of medical professionals work all kinds of evening and night shifts....Kitkatz, on the other hand- is the reason you have a JOB- you know- accommodating the CUSTOMER?
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I threw that into the mix to open up a discussion - glad to see it was civil! Point is us dialysis providers have lives too - kids, etc. It is not unreasonable to stay at work till 6PM - but evenings can be alittle hard on us. It is a dilemma either way. I wasn't trying to be mean either, just realistic. Put the shoe on the other foot - how willing would you be to change your work schedule? We have families too.
Dialysis workers -true- have families too- but you GET PAID MONEY to be there, and plenty of medical professionals work all kinds of evening and night shifts....Kitkatz, on the other hand- is the reason you have a JOB- you know- accommodating the CUSTOMER?
I agree with glitter 110%. My mom for instance has to accomodate our lives and changer her ours at work during certain times of the month, to accomodate thr customer. My dad, he normally works at 7am, but because of Black Friday, he ha to be in at 4am... to accomodate the customer. Dialysis patients are YOUR customers... therefore, accomodation is part of your job.
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No that is not true and I hate when I hear people say that regarding the customer and why I have a job. That is a ridiculous statement. Please! Just what do you mean by that? If you mean payment well guess what we all pay for Medicare so therefore I too want results for the money I pay - does that mean I get to chastise all the patients that take dialysis for granted because I am paying? NOT! Believe me you don't go into health care for the salary and I have done my share of working evenings, nights, Holidays and having to get my butt in a car @ 4AM to drive to a dialysis clinic so patients can get treatment in snow and ice because they need an RN there to run when most people can take the day off and stay home. It is quite presumptuous for you to make a statement like that. There has to be a compromise between patient and staff and usually it all works out in the end.
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I work in a state run mental retardation facility. One of the Doctors once said that the people that lived there were his bosses. They were the reason he had a job. Our individuals are funded by Medicare. I have worked mandated shifts, holidays, ect. It is my choice to work there. Working there is your choice. If you don't think of the people you provide a service to as a consumer or customer, what do you think they are?
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What are "they"? People that need tender loving care - I really don't think of them as "customers" neither. I don't categorize at all. We are not each others "bosses". We are in this together - no compartmentalization needed. I'm alittle old fashioned - customer is too PC.
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I just don't see why people aren't expected to have somewhat of a normal life on dialysis. After hours training for people that have full time jobs that mirror the hours of the training sessions doesn't seem so far fetched. Most of people can not afford to take the time off work that would be required to do it during the day. Kidney disease just like many other disease it can devastate a family's fiances. When a person has an illness structure and routine is important . Being a productive member of society and contributing to the welfare of your family helps you feel "normal". I respect your views as a health care professional. The majority of health care professionals are over worked and under paid. One of your earlier statements was put the shoe on the other foot. Put yourself in the place of someone like Kitkatz who has been doing this for nine years. put yourself in the place of some of the others here. Kidney disease is like someone ripping you into shreds and putting you back together again. You may look whole on the outside, but emotionally, spiritually, and physically it changes your entire life. If you have experienced any kind of devastating illness, I apologize. I don't want seem cold hearted. I don't know you or your health history. You may know what I mean. Everyone has their own crosses to bear.
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Hi Kit
I've been off site for awhile. Hope this isn't a "late" reply. We trained on NxStage - My husband is on dialysis. Our training was ~ 5 weeks, which was long and here is why. 1st we were the 2nd patient, so the nurse, the best every!, was still learning. 2nd We had to establish the buttonholes and his veins are mischievous. and after the buttonholes were established they had to train me to stick him, that took a while. Lucky for us he is retired and I have a job that I could be flexible with the hours. every day we ran ~ 2 1/2 hrs. there is ~ 30 min set up and 30 min cleanup (this is if everything goes right). We were there ~ 4 hrs each day. Depending on your buttonhole situation and how fast you and your partner (I am assuming someone will learn with you) are able to learn the machine and sticking is how fast your training will go and you will be able to be home, home sweet home. I hope your center will be flexible and work around your schedule, but keep in mind they are just a business. I am glad to see someone is going to look into the training time issue for you. Keep fighting for what you need and good luck.
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No that is not true and I hate when I hear people say that regarding the customer and why I have a job. That is a ridiculous statement. Please! Just what do you mean by that? If you mean payment well guess what we all pay for Medicare so therefore I too want results for the money I pay - does that mean I get to chastise all the patients that take dialysis for granted because I am paying? NOT! Believe me you don't go into health care for the salary and I have done my share of working evenings, nights, Holidays and having to get my butt in a car @ 4AM to drive to a dialysis clinic so patients can get treatment in snow and ice because they need an RN there to run when most people can take the day off and stay home. It is quite presumptuous for you to make a statement like that. There has to be a compromise between patient and staff and usually it all works out in the end.
BS- not all dialysis patients have just medicare-My husband worked to get his medicare and paid in for 30 years - so YOU DO NOT pay for HIS medicare, you pay for your own if/when you need it. we also have a choice to which center we use- 'you and your patient's are NOT 'in it together' and the idea that they (dialysis peoples) should have to accommodate staff is ludicrous!!! They are your customers- or they could choose to be Davita's or whatever other companies are in their area- And surely if they paid you minimum wage you wouldn't stay.. I mean, you do make alot more then McDonald's- those are lexuses in the parking lot! not old Honda's!! At the end of the day- you go home to a normal life- with a nice paycheck...my husband comes home and experiences vomiting and nausea, and deprivation of liquid-no salt almost no fruit- no ice cream or cheese....he is weak and tired when his dialysis is done. You get off work and go about your normal life..It is your JOB, it is his LIFE. You can always go find another job- he can't quit or he DIES. I think its presumptous of you to even begin to think a patient should have to accommodate you.
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I agree, "WE" are not in this "TOGETHER" and you said it very well. My question is why are there some clinics that say you need 2 weeks and others 4 or 6? Mine said 4, and it was about 4 hours a day. My husband works a lot and due to the distance the clinic was for me, he did not get trained, I am the one who does all the tx. I think they should have the nurses trained before training the patient. All they need to be trained on is the machine. They already know how to stick and the buttonhole teqn. is not that hard, watch a 30 minute video. I still don't think I even needed 4 weeks, 2 -3 is plenty. Nxstage must have a training protocol that they made Davita agree to, maybe they are not sticking to it?
Kat, I am with you, and if there is anything I can do to help you - just let me know. We can start at chain letter or something!
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Touchy touchy there - I can see you are a bit angry - take a yoga breath! It usually always works out in the end where a compromise can be reached. Please don't fault me because I get a decent paycheck and am not on dialysis. I don't know what you expect of us! Isn't working in dialysis as a career enough? As for the Medicare that is a pretty low blow - I've been working since I was 15 and I'm 49 now. Actually about 90% of patients ARE on Medicare, the commercial patients are few and far between. I'm not looking to argue but you obviously are. Whatever. Sorry if you can't see somebody elses point of view.
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my husband is 50 -he too worked his whole life- so why do you feel like YOUR paying for his medicare? the other 90% of people on medicare also worked for the benefit they get..Medicare is not a handout- how dare you act like it is!
Sorry Kit I didnt mean to hijack this thread- back to you........
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I agree - medicare is not a hand out, stop talking down to ppl like you're so high and mighty!~
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Sorry if you can't see somebody elses point of view.
It seems to me from reading this thread that you, JerseyGirl, are not able to see things from another's point of view. You work in the medical profession where peoples lives depend on receiving care, I mean we are not talking about dental work here. There is no time off for the patients, and if we are in this together as YOU say we are. then there is NO time off for YOU. You have the choice (unlike me) so if you don't like it ....well you know what you can do.
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Myopic & predictable responses. Fact is with my 21 years of dialysis experience you would WANT me to take care of you instead of the poorly trained RN's and PCTs High and mighty maybe because I KNOW dialysis. I can look at the entire picture of a patient's past medical history and coordinate care with the individual patient in mind. With knowledge comes power. And guess what, my patients LOVE me. All I am offering is a different perspective. I have always admired this group of patients and caregivers for your ability to discuss issues. Fact is for 1 of you there are 10 that actually don't give a hoot about their care.
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Well we have experience with people like you who think they know EVERYTHING, and guess what?? Nobody knows everything and I'm tired of reading you're very snotty responses, get off your high horse and pull the stick out of your butt! TRY dialysis, I DARE YOU! You'll be singing a different tune then!
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Oh that's nice, "narrow minded and predictable responses". For being somebody that "I would WANT" to be taking care of me, you really know how to win my heart.
With knowledge comes power.
With arrogance comes ignorance.
Nobody here is asking for a spoon feeding, I happen to be one of the most independent people I know (regardless of health), we just want what is right and just. To expect us to rearrange our lives to accommodate your schedule is preposterous.
This offering of a different perspective you speak of so innocently... All I am offering is a different perspective.
......is snide.
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JerseyGirl, I have no doubt you are good at what you do, unfortunately, like many who have been in the same profession for a long time, you are locked into the whole "this is the way it is" mentality. And 21 years ago, when you started, in center-3 days a week was the way it was. No more. And with changes in technology, modality, lifestyles, and outcomes, comes changes in the delivery system. Accomodations must be made on both sides...for instance, my training nurse came to our home when we were ready to begin cannulating to teach us how, as opposed to making us haul our machine to the center for the 5 days we'd need his guidance. I'm pretty sure that's not in his job description, but he accomodated us in order to allow us to maintain normal work and life schedules. We accomodated him by starting our treatments very early in the morning.
Please keep in mind JerseyGirl that, whenever you want, you can walk away from dialysis. We can't (well, not without dire consequences.) That reality makes for a huge difference in our approaches to our care.
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Sorry if you can't see somebody elses point of view.
It seems to me from reading this thread that you, JerseyGirl, are not able to see things from another's point of view. You work in the medical profession where peoples lives depend on receiving care, I mean we are not talking about dental work here. There is no time off for the patients, and if we are in this together as YOU say we are. then there is NO time off for YOU. You have the choice (unlike me) so if you don't like it ....well you know what you can do.
Now George, dental care is important too. I work in the dental field. With the exceptions of a few rare occasions, most people don't die from it. That is another thread. :rofl; :rofl;
What I want to say is please don't stereotype people with ESRD. It can strike anyone at any time just like other diseases. It shows no mercy. Rich, poor, educated you get my drift. And for every 1 health care professional that does a good job and truly cares there may be 10 that don't. We all have stories we can tell.
I am glad you take pride in what you do. You wouldn't have spent 21 years doing it if you didn't.
What started this whole thing was the time training would take and it would be a hardship for someone to take that time from work. I guess some of these people could quit their jobs and go on Medicare which you seem to be against. In this world of 24 service such as Wal-Mart ect... why couldn't there be an option for off hours training. If it suited the patient and there were health care professionals that make a choice to work it, what is wrong with it? Why not accommodate patients a little so they can have a normal life.
If suddenly you had to do dialysis how would you do it? When would you do it? Would you continue to work?
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Kitkatz, is there any progress on the training situation? Something has to work out. Keep pushing--think of Epoman! Get out your big stick!!
JerseyGirl Re: scheduling My husband worked for the airlines for 38 years. Ice storm hit-he stayed overnight. Hurricane--he went in hours before schedule to be there on time. He rarely had Christmas, Thanksgiving, Easter off and missed lots of the kids activities. BUT, he knew going in to that field that the hours and days were crazy. It was his job. My DIL is a labor and delivery nurse. She works odd hours, weekends and holidays. It is her job. She could work in a doctor's office and work 9 to 5 with weekends off. If that is what you choose, great. But if there is a need for later hours, I am sure there are wonderful nurses that would be willing to have a job. As was said earlier, things have changed in the past 20 years. Lots of centers have nocturnal shifts. It is not asking too much for training to be done when working people can be there. None of us asked to be in this position. I did nothing to cause my kidneys to fail. I don't have diabetes--no family history. I have lived life well, worked, raised a family and played by the rules. I am sure all of us hope you never have such a life altering event that leads to loss of health, job and the life you knew. Please don't be insulting to us; we have all been insulted enough by what life gave us. Working with people with a certain disease is NOT having the disease. When you go home, you can go about the rest of your day and not think about what you are drinking, eating, did you take all your meds, can you have enough energy just to get a shower before falling into bed, will this be the night you sleep or are up for hours vomiting?? The 4 hours, 3 x week is a very little part of our lives. You don't see the day to day reality. Again, please just show a little compassion to all of us here that are trying to make the most of what life has dealt. We are grateful for good medical care. I adore my nurses and neph. I am sure your client, customers, patients feel the same about you.
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Excellent said my dear Paris ;) :2thumbsup;
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:clap; Well said Paris.
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I'm a Dialysis patient and at my job I've had to work weekends including Sundays, Shifts starting at seven am and others ending at eleven pm, while also having to go on dialysis, I don't think it's too much to ask for someone else to do the same when it's needed. So I guess you can say I dismiss out of hand the notion that having a life means someone should only have to work bankers hours.
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Fact is for 1 of you there are 10 that actually don't give a hoot about their care.
Kit does give a hoot and she is trying to make a positive change in her life regarding her treatment. She should be encouraged to become more independent and less reliant on the clinic system. This will save your precious Medicare money in the long term!
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Of all people, the clinic dietician is going to look into home dialysis for me. There is light at the end of this long tunnel, and it may not be an oncoming train. Fresenius is going to open a new center in Loma linda and will have home dialysis unit there. I may be able to train there when it is ready to go. They will probably work with my weird schedule. She is also going to see what the hell is going on! Hurray!
Back to you Kitkatz. I hope things are going will with the new center and the possibility of training. If not, is there a light at the end of the tunnel anyway? I don't know if you typically work through the summer or not, but as a teacher, do you have the option of taking the 8 weeks of summer off? If nothing else has worked, maybe you could train then. Keep pushing Kitkatz, there will be a way.
Alene
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Lets stay on topic here, and remember everyone has a voice and an opinion.
Sometimes it gets a little heated, so lets take a breather and offer Kitkatz advice about switching to home dialysis.
Sluff/ Admin
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Any more news on the training Kitkatz?? Hubby has bee on home hemo nocturnal over a year now and it is fantastic. Would never want to go back to in center. Suggest to them to change their hrs for the day when you need to train. Instead of going to work early in the morning they could go in later and finish later in the day. Only work the same number of hrs. They waon't have to make this adjustment for all patients just the ones who cannot rearrange their schedule. I am a teacher too kitkatz and I know that it is impossible for us to change our schedule.
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I agree that the center that is offering the training should be flexible when beginning the training program for their patients. When they set up their Hemo @ Home program, they must take into consideration that the in center HD patients have arranged their lives around going to the center for treatment. For many, that is the worst part. The training program should be setup to move them from one side of the center (the in patient side) to another side (the Hemo @ Home side) during the same time. However, because 5-6 days on treatment will change- the patient will have to be flexible enough to change the 2-3 days off to 5-6 schedule for only a very short period of time. It should be the focus of the center to get the patient on Hemo @ Home as soon as possible- better dialysis, better health, better quality of life. The center and the staff should be aware of the "training schedule" and be flexible enough to even "go home" with the patient for a few days to make sure everything is safe and the patient is comfortable with their setup. This is helpful in the long run because it may mean fewer problems "down the road" that may require more time with the trainer. If that means the trainer has to work "odd hours"- so be it. The patient will be then out of the center, enjoying the freedom of life again. Those who choose to become trained to work with Home Hemo patients, should enter their training knowing fully the commitment they need to make the program successful. We patients know that, we are committed to living life- we chose that when we signed up for dialysis.
The Dialysis centers' focus should be on patient care whether it's in center or at home.
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I have my people working on it. Lordy, I started a conversation here didn't I? Calls are being made and someone may be able to get me NX stage notebook. We shall see.
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Can you tell we love you, Kitkatz?? We want the best for you and apparently, we are williing to fight for you :boxing;
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Did the number I gave you help?
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I am waiting to see what the center can do before I call Alvin and the troupes in NX stage.
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Kitkatz,
Please let me know if I can make any phone calls for you. All I need to know is where you live. I still have folks that I consider friends on the "inside" (inside DaVita At Home and NxStage) a few of them owe me favors.
If that doesn't work I think that there are enough of us here to raise enough of a stink to get you what ever you want.
If I could train you myself I would!!!
kruep
(Kristi)
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Somehow, I missed the start of this thread, but 6 weeks boggles my little mind.
I just started (again) Home training and they are talking about having me home for Christmas! I'm not sure if I'll be ready by then! I gotta get up the nerve to "stick" myself!
Renwick
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I know the feeling about being afraid to stick yourself (i had a hard time giving myself epo shots) :P but i hope you get over that fear soon and you are home for Christmas doing your home hemo :) Good luck to you Redbomb and keep us updated on your progress, i'll be sending good positive thoughts your way my friend :cuddle;
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There may be another center in Rancho Cucamonga that has home hemo and may be able to take me with my crazy scheduling difficulties. They are currently looking into it. Why is every center's head person Linda or Donna?
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Great news, Kit. All my crossables are crossed that this works out.
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Great news, Kit.
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I hope this works out Kitkatz. You have been working so hard toward the goal. Crossing fingers, saying prayers---whatever it takes :grouphug;
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kitkatz, I hope they can do what you want them to. Let us know. :cuddle;
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Oh Kit, I pray this will happen. Keep us updated.
Love, Mimi
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Good luck, Kit. Just keep that big stick swinging :Kit n Stik;
Adam
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I am still awaiting any news on this possible new center that is in the picture now.
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good luck
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Kitkatz -- It sounds like you will find a way to make it work. I did and feel great on the Nxstage machine. I did have 6 weeks of training but I was not in a real hurry to get back to work and had trouble with my first set of buttonholes and had to establish another set. This took an extra week. I am now in my fourth month at home. The best part besides being able to eat what I want is that my time is flexible. I can go on early in the morning or late at night. If I want to go out on a Sat. night I just do a treatment in the morning. The next step for me is going nocturnal.
If you can establish buttonholes before your training it will be much shorter, probably closer to two weeks.
Hang in there.
-Mark.
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They said tonight" Home dialysis? There is training in the area for you if you want us to get you ready for it."
What do you all know about the Baby K machine for home dialysis?
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Don't know anything about the Baby K machine but do know that I'm happy this option is opening up for you. All the best with it Kit.
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kitkatz :yahoo; I happy to hear that it is being offered. Len and I trained on the Baby K one week before his transplant call. I think because we had used the 2000H for 4 years, the newness of the K scared me. The K is missing some modules that I used a lot, automatic profiling (we always used profile 3), automatic blood pressure settings, ie, where you could set it to take every 15, 30 minutes, and it didn't have on-line clearance information. We were told that there were modules available to do those functions. Good luck. Any idea when you might start training. :cuddle;
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Thank goodness--it was time for some good news for you. This is great. Can't wait to hear when you can start training. :grouphug;
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This is a good time to train, when school is out. How long will it take?
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Baby K and not NxStage? Well, anything at home seems like an improvement to me! Hope it works out for you!
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All I know if you need more space with the BabyK for the water treatment unit and the potental to make some upgrades to your home's plumbing and electrical systems exist. I'd PM Hawkeye and ask him...he works for FMC