We are new to this board and it really looks like a good one. I have been on dialysis since Oct. 2004 due to an auto immune disease and have been going to a dialysis center 3 times a week since then. We have been researching the option of hemo home dialysis with the NX stage machine. I have been told by my Dr. that I am a good candidate for it, and he says he has been contacting the company every week to try and get one of their nurses trained, so they can train us. He says that they are dragging their feet, and he is really getting no response. My question to anyone is, who would we contact next if my Dr. seems to be getting no reply. Obviously we would really like to get it started as soon as we can, and are not sure where to turn or how to locate a clinic in Wisconsin that might be able to help us. Thank you in advance for any information you are able to provide.
Thanks for the welcome, it’s nice to get information from others going through this. We are in Neenah, Wisconsin. From what we have been told there aren’t many places around here that do hemo dialysis at home, and if they do they use the kind of machine I now use at the center.
Thanks again!
You can look at the different kinds of equipment available for home hemodialysis from the home page of Home Dialysis Central at http://www.homedialysis.org. Each machine maker’s website is provided so if you like what you read about the machine(s), you can contact companies to find out if there is a clinic in your area that is using that machine OR you can suggest that your clinic consider a different machine.
Even if you’re at a Fresenius clinic where they typically use Fresenius machines, they have a “2008K at Home” machine that has a lower screen. This makes it easier to use when you’re sitting or lying down than the traditional 2008K machine that’s used in-center.
Thanks for the info. The first place you mentioned is only about 5 minutes from my house. We contacted them when we heard about the new NXstage mnachine, and they had never even heard of it. I am going to try and talk to my Dr. again this week, hopefully tomorrow when I am there and see if he has had any luck contacting the company. We had also heard from the Manager at my clinic that the company wanted at least 10 people to sign up, apparently they don’t seem to want to do it for only 1 or 2 people. I think tomorrow we will also call the company since we have had no response to the e-mail that we sent them. It is frustrating but we are determined! Thanks again for all the info. We really appreciate it!
The Marshfield Clinic (111 miles away from Neenah) offers the NxStage machine–I heard that from one of the NxStage folks just yesterday.
It’s: Saint Joseph’s Hospital
123 Northridge Street
Marshfield, WI 54449
Phone: 715-387-7101
Fax: 715-389-7310
It probably sounds like 111 miles is far away. But it’s important to remember that once you’re trained, you only have to visit the clinic once a month, so a home clinic can be as far away as you’re willing to drive once a month. On our “coverage” maps, we put a 120-mile radius (about 2 hours) around each center for that reason. So, if the center 5 minutes from you doesn’t offer what you want, think about going a bit further afield.
Thanks for the information! I think we will check into that and see what the training process is. I will do whatever I have to do so that we will be able to make life a little easier for us. I was really hoping that the clinic I am going to now would be able to get it going, as it’s only about a 25 minute drive for us. It looks though like it is going to be quite a while before they get it going, and it is starting to feel like we are getting the run around from someone, not sure who though!
Thank you again!!
As I understand it (and last I heard), NxStage puts a few roadblocks in the way of individual dialysis clinics, having to do with a minimum number of patients they must sign up to be part of their program.
If it turns out you can’t use NxStage, use whatever machine they offer. I use the same machine as at home as I did in-centre. It’s not that much more complicated to do. If you can and want to switch later, much of the knowledge and experience you will have gained will carry over and it should be a breeze to switch.
I personally have no regrets about switching to home hemodialysis from 3 times per week in-centre, but I think it’s better to go into it for the health and lifestyle advantages rather than with ideas about making life easier - kind of like the choice between PD and hemo. You still have to do this stuff. It doesn’t do itself, plus, you’re now responsible for everything: treatments, supplies, etc. But the dietary and fluid advantages of dialyzing every day (except one or two a week) are hard to resist.
We could use the same machine that I am using now and train on it only 5 minutes from my house, but have chosen not to for a variety of reasons. The main one being expense, we have a well and do not have the money to have the plumbing and electricity upgraded. My comment about “making llife easier” obviously means, my health better…that is the main reason we want to start at home. Also, just in general, not having to travel, putting an extra burden on my Parents to get my Son to school because I am not home…and many other things. I did not mean to make it sound like it was not for making it better for me…
Thanks!
That’s what my husband is going to do. We are about 100 miles from the Davita Home Memo unit in Atlanta. As of 11/05 they had 54 home hemo patients (10 using NxStage machines). The Director said to call her about a week ahead of time and she would be ready for us to train. We’ll both be there a week or two, then I’ll come back home while Hubby continues to train for a few weeks. Once he’s home, everything will be handled online, or over the phone, except for a once a month trip to the clinic.
BTW, we tried to get a NxStage from 3 of the local clinics – Davita and Fresenius – but they were not cooperative. Thanks to online support from Gus and Beth we didn’t give up! NxStage took a few weeks to come through w/ the info but they did get us hooked up w/ the unit in Atlanta.
I hope all works out for you and that not too far in the future we will be able to be doing the same. We are going to try and talk to someone tomorrow when we are there, and see if they have any new information. I am not going to settle for answers like “we’ll see what we can do”…we are going to see what we can do instead. I have really found out that you need to take charge of your own health care, and that is what we plan to do! We are glad that this board is here, it helps to have other people to talk to! Thanks again!!!
I have really found out that you need to take charge of your own health care, and that is what we plan to do!
We put together another site to help people take charge of their kidney health. It’s called Kidney School, and it’s an interactive, tailored kidney learning center in 16 modules that you can go through on-line or download. The modules cover treatment options, coping, nutrition, sexuality & fertility, anemia, lab tests, heart health & blood pressure, staying active, working with the care team, alternative therapies, and much more. It’s free, and you can go to it at http://www.kidneyschool.org.
it is a great way to go and certainly has a proven track record…also there is no blood involved and patients do very well…you won’t have to travel as far and will still be able to stay at home…
:lol: Probably not. Everyone here is partial to one or the other, based on their own experience and situation. In my husband’s case, he hasn’t even started dialysis but he already knows he cannot do PD. He has PKD and his kidneys are so large they are already crowding the other organs – there is no room for anything else in there! If you’re on PD and doing well, that is wonderful. Be careful, take good care of yourself, and make it last as long as possible.
Based on what I’ve learned online the majority of PD patients like it very much – until they start having problems. I’ve not researched it but I would guess from what I’ve read online that after just a few years, for a variety of reasons, most of them are doing HD. Then the debate starts over which clinic and which machine.
IMO, the only point which is NOT debatable is that every dialysis patient possible should be doing it at home.
Be careful, take good care of yourself, and make it last as long as possible.