Sandy
Joined: 25 Jan 2005
Posts: 38
Posted: Tue Jan 25, 2005 10:41 am Post subject: Now on NXStage
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Today was the first day that my husband was on the NxStage machine at home. I cannot fully express my gratitude to the inventor of that fine machine. We drove 60 miles each way every day for three weeks to learn the system. I really pressed to get that for him and I am so grateful that we were able to do it. I highly recommend this to any hemo dialysis patient. The NxStage people are over the top with their customer service and their ability to do the right thing for the patients. How refreshing! My hope is that more people will consider this method and get out of center. I'm a decorator and know nothing of medicine so..if I can do this anybody can! Good luck to any and all who want to try this. Sandy
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advocate
Joined: 25 Apr 2003
Posts: 20
Posted: Tue Jan 25, 2005 4:35 pm Post subject: re: now on NxStage
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Congratulations! Great to hear that you find the customer service so good with this company. Please tell us more when you have the time. Can you say where your training took place?
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Sandy
Joined: 25 Jan 2005
Posts: 38
Posted: Wed Jan 26, 2005 3:09 am Post subject: NxStage
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The training took place at Piedmont Dialysis Center in Winston-Salem, N.C. The Nurse that trained us was wonderful, patient and a gifted teacher. Her name is Charlotte. Everyone there is pleasant! A wonderful change for us from the center he was going to...altho as I have posted before the nurses and tech's at the center were great, but the management and their practices were to my way of thinking horrendous! Does that sound a little familiar? My husband has now been on the machine about 1 1/2 hours...he is 1/2 way finished and feeling GREAT. His energy is soaring after treatment. He used to come home and go to bed for the balance of the day. Since starting NXStage he stays up and say's he is ready to PARTY!! I hope I feel that good soon! I must tell you that you are required to have a partner to do this treatment. It takes two...however after he is on the machine, I can do other things besides sit and monitor...I just need to be close at hand in case. I hope I have answered some questions. Feel free to ask others and I will try and respond. If I don't know, NXStage will be happy to answer them. Sandy
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Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Wed Jan 26, 2005 3:59 am Post subject: NxStage
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Was there any particular reason you chose this machine over the Aksys or didn't you have a choice. Is there a limit to the length of time you can run on the machine? From what I have read on the home dialysis board all patients so far have been very satisfied with this machine. If you ever need service on the machine let us know how you feel about that good or bad?
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Gene
Joined: 26 Jan 2005
Posts: 2
Posted: Wed Jan 26, 2005 4:19 am Post subject: NxStage
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Congratulations for getting in a better program. Great to hear your husband feels so well.<
><
>How are the start up charges for the program paid for ( training for staff and for patients)? Then how are the txs paid for if they are 6 days a week?<
><
>Was your husband trained to stick himself with the buttonhole technique?<
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>Is this program in Tom's River , NJ? Is this a wealthy community or is there affordable housing? Is it a very cold climate there? A lot of traffic?<
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>How has your husband's diet changed from traditional 3x week hemo? Is it more liberal?<
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>Can you provide a tel # to the program?
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Home Patients
Joined: 26 Jan 2005
Posts: 2
Posted: Wed Jan 26, 2005 4:39 am Post subject: Answers
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If you go to the
http://www.homedialysis.org/ site and click on Message Boards then click on HD for patients, you will find the answer to most of your questions. There are patients that are on the NxStage that have responded to others regarding diet changes, costs, ease of use, buttonhole technique etc. One girl even told about her trip to LasVegas with the Nxstage. One patients has also supplied a link to the NxStage website.
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DEO staff
Joined: 26 Jan 2005
Posts: 4
Posted: Wed Jan 26, 2005 5:50 am Post subject: Just one opinion---
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In reading many message boards and education websites as well as listserves, I see many sharing experiences with others, good and bad. There is an overwhelming amount of questions that individuals pose related to various topics, including home dialysis. Having been interested in this area, as well, I am wondering why the home dialysis (AKSYS, NxStage, FMC, etc) companies do not have detailed (education) material on their websites to cover these questions that potential clients, of theirs, have? Questions related to set up, costs, insurance seem to be most important. Additionally, I wonder why the dialysis companies (DaVita, Gam
o, FMC, RCG, etc) that provide in-center treatment do not have more information regarding this topic. It would appear, in my opinion, that providing this detailed information upfront, would save many individuals alot of stress and frustration in their lives, which is already filled with stress of having a chronic illness. Furthermore, would we, patients and family members, not like to see comprehensive education on the companies websites?<
>Not to downplay the many education sites that provide dialysis information, but do companies have an obligation to provide same? Roberta
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Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Wed Jan 26, 2005 8:35 am Post subject: Companies Giving Information
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Both the Aksys and NxStage Website have information and if you have a specific question they will call you or e-mail you with the answers. I suppose they don't get into the cost as it may very. If you buy 5 machines as compared to 50 machines, they probably offer a discount and prices are negotiated. Rather your insurance covers or not probably falls in the relm of responsibility for your provider. I have contacted both companies for information and received it but I still prefer to talk to patients. The companies can't really get into the "personal" experiences patients have because once they sell the machine to the center it's basically feed back between them and the centers.
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Sandy
Joined: 25 Jan 2005
Posts: 38
Posted: Wed Jan 26, 2005 1:04 pm Post subject: NxStage
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Wow! Let's see if I can answer all these questions. First off, comparing NxStage and Aksys. I looked at both systems and tried to weigh the benifits of both. NxStage came out on top because it is a single cartridge machine, simplified and does not require the user to do additional plumbing on their home. It uses sterile dialysite fluids. The machine does not require time to clean or re-boot as the cartridge is self contained and disposable. It is my understanding that NXStage will send out a new machine with-in 24 hours. Because they have been so professional and honest with us so far I have no reason not to believe that this is not so. In my opinion, most Doctor's do not push for home dialysis because of financial gain. They want to keep patients in-center. Only those Dr.s who really are interested in the welfare of their patients recognise that patients do better at home. The envirnment is better
for them, their clearances are better, etc. Speaking from experience only, my husbands meds for high bloodpressure have been halved already. Now about cost, he has a Medicare gap policy and there was absolutly NO problem with the insurance co. and medicare. Yes, we dialyse 6 days per week, 3 hours per day but that does not appear to be a problem. I think Medicare encourages home dialysis. In my experience, if a patient had access to a teaching facility and a group of Dr.s there, they probably would have a friendly ear towards this treatment. Sandy
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patient
Joined: 29 Oct 2002
Posts: 137
Posted: Tue Feb 01, 2005 1:44 pm Post subject: To Sandy
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Would it be possible to call you to ask about your experience with the NxStage?
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Lin
Joined: 28 Oct 2002
Posts: 337
Posted: Mon Feb 07, 2005 2:52 am Post subject: Availability
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Although it certainly sounds easier to use, less of a hassle for pts. and families, I'm not sure units will be rushing to make it available. I've read on other boards over time that it's even more expensive up front than the average dialysis machine. The units I've contacted say they no longer provide home hemo because of the cost associated with the program, and so I wonder where the NX stage, or for that matter ASKYS will fit in!<
>Maybe over time the price will come down and that will affect availability. Lin.
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thinker
Joined: 07 Feb 2005
Posts: 2
Posted: Mon Feb 07, 2005 6:42 am Post subject: and?
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what happens to the 'options' available to patients and fact that patients are to be made aware and offered these options. Federal oversight should mandate companies to offer and have available. Patients life not companies life.
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Sandy
Joined: 25 Jan 2005
Posts: 38
Posted: Mon Feb 07, 2005 8:01 am Post subject: nxstage
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Things are perking along. We are just thrilled about NxStage. Patient, you asked me to speak me about NxStage and I encourage you to call NxStage and speak to them. I dealt with Curt at NxStage and he can give you my number or vise-versa. I have nothing but praise. My husband is doing so great on this program. There seems to be a lot of concern about costs. I think that is totally unfounded. Medicare and our medicare gap policy is taking care of ALL the costs. Just make that phone call to the NXStage people and they will answer all your questions. We went to Atlanta for the week-end and got back home last night about 6:00pm <
>We then started treatment and finished about 9:30. We love the flexability! No more dread of having to go to center. No more vast quantities of fluid coming off! No more negativity. How wonderful! If I sound a little more OPtimistic it is because I AM!!!! Sandy
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Ginger
Joined: 07 Feb 2005
Posts: 2
Posted: Mon Feb 07, 2005 12:05 pm Post subject: NxStage
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Wow, Sandy, sounds like your husband is doing great on the NxStage. Can you tell me, how long does it take to set up for the tx and does he self-stick or have a catheter?
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Sandy
Joined: 25 Jan 2005
Posts: 38
Posted: Tue Feb 08, 2005 9:27 am Post subject: NxStage
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Ginger, The machine takes 18 minutes to prime and go thru the steps. Then it takes us about 8 minutes to do the necessary things we need to do. Jim has a catheter, however we have an appt for surgery for a graft in mid month. He has had several failed surgeries for fistula etc. I am just so positive about this method.<
>I want others to enjoy and feel the pleasure about not leaving home for treatment.
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Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Wed Feb 09, 2005 6:41 am Post subject: Enjoy the pleasure
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Sandy I am so glad you posted. And I agree with you 100%. The challenge is getting the home programs available for ALL patients who want it. I am terribly disappointed the government isn't putting more pressure on centers to offer home dialysis. They could put on the pressure for all patients who could to use a fistula so they could put on the pressure for home treatments.
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Roberta
Joined: 09 Feb 2005
Posts: 2
Posted: Wed Feb 09, 2005 12:50 pm Post subject: home hemo
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Marty<
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>Agree with you! Makes one wonder why? If patients can have options given to them, companies should be able to offer same (home hemo). The new regs stress much about home hemo and offering/educating patients on options, however, if the option (home hemo) is not available, then what good is it.. Certainly it would be nice if companies did offer home hemo to their patients. By offer I mean to connect them to a home program affiliated with their unit. money/politics, what would we do with them?
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Lin
Joined: 28 Oct 2002
Posts: 337
Posted: Thu Feb 10, 2005 3:33 am Post subject: Nxstage
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I don't think the units understand what the NXstage is. The last unit I contacted about doing home hemo told me they only have one home pt. and don't wish to have more, especially one like me who lives so far away and doesn't have city utilities ect.. She actually gave me the phone number for the Nxstage and told me they were a provider of service, so I should call them! I knew more about it than she did.<
>The NXstage even if it did cost more initially should be less in long run because of ease of use. Too, it would not need all the renovations that the other machines need to be used, correct? Lin.
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Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Thu Feb 10, 2005 5:48 am Post subject: Many Hurdles
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Lin, I think it goes way beyond what you are saying. In my experiences in our area I don't think they even have a clue what home hemo is all about. I think there is a real laziness in the field to just do what they know and not look or challenge themselves to grow even if it means helping the patients. I think with a little pressure from the government they may start educating themselves better. When the government put out the word on using fistula's; I heard that from every center I talked with and not once but numerous times.
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