Hello fellow board posters :)

Discussions for Patients, Family, and Friends HD For Patients
#1

Hello to everyone on the board. I have been reading this board for several days now and by doing so I realize I have a lot of questions about a lot of things concerning home hemodialysis.

I am 39 yrs old, didn’t know I had kidney problems until a visit to the hospital occurred in May of 05, at which point I was immediately admitted and started dialysis. I am now trying to get into home hemo and am due to start training sometime soon with my wife being my helper.

I go to a Fresenius Clinic 3x a week. We have had no social worker in the clinic in the last 6 months, and just recently they scaled back the Doctor’s weekly rounds to once a month. I honestly feel like I can take better care of myself at home; in center I feel like I am just a patient number that has to dialyze.

I also feel like I am getting bad information from clinic staff on some of my questions; for example, I asked a nurse the other day what exactly the buttonhole technique was, and she told me she really didn’t know exactly what it was, but she thought it was something placed under the skin, like a button, and you used the same site each time, but that they didn’t do those in this area, and there was no real benefit from it. Reading this board, I get an entirely different opinion on it’s use and the benefits. I am more inclined to believe the people posting on this board, since it seems to be so widely used by the many posting here.

I have so many more questions, but will not bombard you with all of them right now since I have some time before the ball starts rolling. They have already come out and inspected the apartment and said that we would be able to do it here as long as the landlord would allow us to install a 220 outlet and a drain; the landlord has agreed to do this. The only problem now is that currently there is only one nurse available to do the training because the second nurse is going on maternity leave soon and will not be available.

I am really interested in finding out about NxStage and eventually switching over to that, but first things first and right now that is to get me home doing treatments and then we can go from there.

Richard

#2
#3

I am a social worker. I am concerned that no social worker has been at your clinic in 6 months. Is there a social worker assigned to your clinic who hasn’t visited often or hasn’t visited on your days? Have you asked the clinic manager to speak with a social worker? If the clinic manager doesn’t think patients need a social worker, he/she may not be pushing to have one. Many nurses don’t know what a social worker does or can do to help patients.

The federal regulations that govern dialysis clinics require that clinics have a social worker and that the social worker performs specific tasks. If your clinic hasn’t had a Medicare survey in a while, there hasn’t been any pressure to do anything different. However, if the Medicare surveyor visits your clinic, when he/she asks about social worker coverage and looks in charts for social worker notes, if none are there or if they’re not there at the frequency that the federal regulations or clinic policies state they should be, the clinic will get a citation and will be forced to have a social worker.

I’m also concerned that you’re not getting the education that you need. I’m not too surprised that staff in the clinic don’t know about the buttonhold technique. Although this technique has been around for years, dialysis staff have been using the “ladder technique” of rotating sites as long as I’ve worked in dialysis (1978). I suspect that the nurse was thinking about something called the LifeSite which was a button-like catheter. There were problems with the device and the company that made it has gone out of business.

So far as the doctor not seeing you more than once a month, are you being seen by a physician assistant or nurse practitioner three times a month? The federal government changed physician reimbursement a year or so ago to encourage doctors to see their patients more often rather than less. When a physician assistant sees patients 3 times out of the month and the nephrologist sees the patient once, the physician’s office gets the maximum reimbursement. If the physician only sees patients once a month and there is no physician’s assistant or nurse practitioner to see patients, the doctor is reimbursed at the lowest level. When I worked in the dialysis clinic and patients complained about not seeing the doctor, I always suggested that they make an appointment to see the doctor in his/her office. This gives you more privacy than talking with the doctor about your personal concerns in the dialysis clinic and gives you the opportunity to plan ahead and have a list of questions rather than trying to remember things that you want to discuss when the doctor drops in.

Incidentally, Medical Education Institute runs other websites that may answer questions that you have:
– Kidney School at http://www.kidneyschool.org
– Life Options at http://www.lifeoptions.org

Please tell your doctor and other staff at your clinic or doctor’s office about our websites where they can find free information to share with their patients.

#4

Hi and welcome. If you are interested in the NxStage I would try to find a clinic that supports it rather than planning on switching. They put a lot of money into training you and getting the equipment and generally aren’t very supportive of changing. I would also think a Fresenius unit would not offer a NxStage because they are competitors.

I have used both and they are both great machines. The NxStage is smaller and easier and you can travel with it. Right now it takes more supplies but that will be changing significantly when they start having us make our own dialysate at home.

I have never been treated in center but am unusual in being able to start home training on my first day of dialysis. I have only used buttonholes (well you use sharps to start them, but never done sticks in the “ladder” method).

Glad you have found us, we are all happy to answer any questions you may have.

Cathy
home dialysis 9/04
NxStage 3/06

#5

Hi Richard,

In my opinion, if you’re really interested in the NxStage you need to start there. After the clinic pays for your training, their machine, and installation, they will not want to switch you to a NxStage. Besides, if it is a Fresenius clinic they use their own machines and will not be eager to use a competitors machine.

You need to go to the NxStage web site, get contact information and ask where is the closest center using their machine. Even if it’s not nearby you can still go there to train and then you’ll only have to go back once a month. The clinic where my husband plans to go is 100 miles away, but it is the closest one using the NxStage.

Glad you found this group – great source of info!!

Lorelle

#6

welcome Rich and Stacey! My name is Lin. and I’ve been incenter for five years next month. Initially I was in an FMC unit but couldn’t go on home hemo with them because I couldn’t afford it; I felt let down at the time but there trully is a silver lining because now I’m in a unit who is going to start a home program using the Nxstage machine. We our currently planning an addition to our home and a special corner where I can do my txs… I hope you can find a training center that offers Nxstage. I wish that the list of units who offered home hemo would mention which machine they use and types of txs offered for pts. who might have a preference. Good luck to you. When do you start training? Lin.

#7

I agree with Lorelle and Lin,

you need to find a training center already offering NxStage. Switching from one machine to another is not an easy task unless its ordered by the Doctor and is urgent…

#8

Gus wrote:

Well Richard, here I am, anything you need to ask or find out I am here to assist on making your decision, so fire away! … you can also search this board for already answered questions…

Thanks Gus, I am sure we will need all the assistance we can get, since we are not getting very good information otherwise.

Beth wrote:

I am a social worker. I am concerned that no social worker has been at your clinic in 6 months.

Beth, at the time of my original posting, we had not seen a social worker for at least 6 months but, since the posting, they have hired a social worker so hopefully things will get much better in that regard.

I’m also concerned that you’re not getting the education that you need.

We are also very concerned that we are not getting the correct information from different people at the center.

So far as the doctor not seeing you more than once a month, are you being seen by a physician assistant or nurse practitioner three times a month?

When the Doctor quit seeing us weekly we were assured that we would be seen by a nurse practitioner once a week, but that hasn’t happened yet. We keep hoping though.

Cathy wrote:

Hi and welcome. If you are interested in the NxStage I would try to find a clinic that supports it rather than planning on switching.

Cathy, we have been in contact with NxStage since my original posting, and the closest place to us is about 8 hours away. They are trying to open a center in Birmingham, Al, but nothing is concrete, and it will be at least 6 months before that happens, if it does.

Lorelle wrote:

In my opinion, if you’re really interested in the NxStage you need to start there

Normally I would agree but, with no center around to train at, my options are very limited.

Lin wrote:

welcome Rich and Stacey

Thank you very much, Lin :slight_smile: In fact, I would like to thank all of you who responded to my original posting. You made me feel very welcome, and I really do appreciate it a lot. :slight_smile:

#9

Hi

I’m new too, I started in 12/01/05 in center. Had alot of the same prolems you talked on. I got out into home by looking into this page. All the folks here, have been very very open and more than able to give information. I was able to look at all the machines.

As for getting home you have to be set that is the way to go. I made the choice and did almost all the work myself with help of this web page. I’m home now on a nxstage. The center only had babyk’s and nxstage. The other centers were to far, the center I started and got trained to do home hemo have the market almost to them selves.

The one problem is who your doctor is with, they will give you a hard time when you want to make choices on your own after you do your homework. They have and the center want the doctor to invest into the company.

But stick with it and don’t take no for answer.

Bobeleanor :smiley:

#10

Hey I must agree with that, I remember dealing with the Dr. situation…some Drs don’t have a set mind to think for the home patient resulting in us patients beeing tagged as a complainer.

#11

bobeleanor wrote:

I started in 12/01/05 in center. Had alot of the same prolems you talked on. I got out into home by looking into this page

I am hoping that I can accomplish the same thing you did by using this page. I have already been able to get more correct information from here than I have anywhere else. :slight_smile:

As for getting home you have to be set that is the way to go

I am past ready to get home. I have this phobia about going to center, for some reason, and would be much happier at home, if for nothing else, but the mental part of it.

the center I started and got trained to do home hemo have the market almost to them selves.

I am running into the same thing here, but it isn’t the NxStage that has the market in this area. The closest Nxstage to me is Atlanta, Ga., which is a good 8 hours from where I am located. Still, I am trying to think of a way that I can arrange to go and get trained and on their program, even with the distance between us.

The one problem is who your doctor is with, they will give you a hard time when you want to make choices on your own after you do your homework

Well, I am not currently happy with what is happening with my Doctor, so if I have to switch I will. I have had the same Doctor since last May, who I have been very happy with but, just recently, he quit making weekly rounds at the center, and we will only be seen once a month in center by a Doctor, and it will not be the same one that I have been using since starting dialysis. The center is now making my choice on what Doctor I see and we, the patients, are not very happy about this new change.

#12

The “guest” posting is from me, I had forgotten to sign in before posting to the board and didn’t want there to be any confusion.

Sorry :slight_smile:

Richard

#13

I don’t think you would be able to pull it off training 8hrs away. You have to go back once a month to the clinic to see the nephrologist and get supplies such as gauze etc. We travel 5 hrs one way and thats about as far as I think one could push it.

#14

Marty wrote:

I don’t think you would be able to pull it off training 8hrs away.

Marty, I fully agree that 8 hrs would just be too much for travel once a month. However, I am trying to find out if they have a NxStage training center in the New Orleans/Baton Rouge area since my in-laws live there and I could stay with them while training and so forth. Plus it is only about 3 1/2 to 4 hour drive from here. :slight_smile:

#15

I am trying to find out if they have a NxStage training center in the New Orleans/Baton Rouge area since my in-laws live there and I could stay with them while training and so forth. Plus it is only about 3 1/2 to 4 hour drive from here.

Try Tulane University’s dialysis center (if they’re back up & running after Katrina). They’re unverified in our database, but we believe they do offer DHHD, in which case they may use th NxStage machine. Their phone # is 504-582-7979, and they’re located at 1415 Tulane Avenue #HC13.

If you call them, please ask them to verify their information in our database! I didn’t see anything in Baton Rouge.

#16

Dori wrote:

Try Tulane University’s dialysis center (if they’re back up & running after Katrina). They’re unverified in our database, but we believe they do offer DHHD, in which case they may use th NxStage machine. Their phone # is 504-582-7979, and they’re located at 1415 Tulane Avenue #HC13.

Dori, thank you! I had already located the Tulane information in your database and had called but the number is disconnected. I will keep trying to reach them over time and when I do I will try to verify their information for you.

I think my closest training center for the NxStage unfortunately is going to be in the Ga area which is just to far at this time. The representative did mention that they are trying to get a center set up in the Birmingham area of Alabama but that is at least 5 months away.

I think my best bet at this time is to go ahead with my training with the big “F” company, when they get around to training me, and just keep my options open for later.

#17

Or, try calling Tulane information or the phone company information to get the real number…

#18

Dori wrote:

Or, try calling Tulane information or the phone company information to get the real number…

Thanks Dori, I will give that a try. Maybe I will have better luck.

I did talk with the NxStage Representative that handles the Florida area and he said that they just made a presentation in New Orleans and will have a center opening there possibly within a month. He didn’t have all the details and the rep. that I needed to talk to, that handles New Orleans wasn’t in, but he is going to have him call me with more information.

#19

.Hi

the center I started and got trained to do home hemo have the market almost to them selves.

I am running into the same thing here, but it isn’t the NxStage that has the market in this area.
The closest Nxstage to me is Atlanta, Ga., which is a good 8 hours from where I am located. Still, I am trying to think of a way that I can arrange to go and get trained and on their program, even with the distance between us.

The center I went into and the center I went to train were the same company , NOT run by nxstage. The centers did not use nxstage on floor. The center I trained in was a hour away and they offered housing during my training (free). My things are shipped right to house. I do at this time have to go into city for once a month lab report.
bobeleanor :slight_smile: