I'm gaining

Good News. The center I contacted will let us come as a nocturnal patient.
Bad News only can run 3 nights a week because of reimbursement issues. They don’t actually have a nocturnal program started and I think they agreed to support us because I already have the training and experience. I have a lot of thinking to do.

Marty, Please know you have my support in whatever you decide to do for you and Dad. I’m glad you have a foot in the door, and if I know you you will make good advantage of the opportunity to change things for the better. I wish things were easier for you, as it seems you are always the one clearing a path! It just shouldn’t be so hard to do the right thing. Lin.

Well at least I am in a situation where both sides can gain. The center wants to start a program and I want to get closer to home. I think there is a reasonable chance we can come to some kind of a solution. Seeings how they don’t have a program; I am going to compile a list of questions of how they are going to handle certain things. This will give them more insight of what they are getting into and me more insight as to how well we would be supported. Funny usually they want to interview the patient and helper and now I want to interview them. Lin, thanks for your support just knowing someone cares may not make the road easier but it makes it worthwhile.

I may be in a situation similar to yours. my transplant center wants me to have a nephrologist and a dialysis center nearby. when I spoke to the nephrologist’s secretary/receptionist/person who makes appointments she told me they have a short daily program. now that nocturnal is finally working out it is not as appealing as it was originally but I’ll go to my appointment and get the scoop.

That’s exciting that you may have found a closer clinic. You bring up a good point about patients feeling like they must be “accepted” by a clinic and doctor through the interview process. In fact, the interview process is a two-way street. The clinic administration and doctor need to know they can meet your (and your father’s) needs and you need to know that this as well. They may have different ideas than you do. It’s kind of like interviewing for a job. You can be passive responding to questions or you can ask them questions about their company (or clinic in this case), their communication style, they emergency procedures, their backup procedures, etc. Your idea of taking a list of questions to be sure that you cover the important issues is an excellent one.

Feel free to share the general questions with folks on this message board if you feel comfortable doing so.

I will share my future experience with all. However, this is where I am at right now. I know to change centers, nephrologist etc. and to get things to work smoothly will take a great deal of effort on my part. I feel the same way I did when, I took dad to Saratoga. Here I am in a place where I don’t know anyone, don’t know if I can trust and don’t know what I am getting myself into but at least they already had a program. If I go through the whole deal with the center closer to home and I don’t like it, what a waste of time and energy. This really makes me debate a lot the issue of becoming my own durable medical company. If I have to expend the time and energy to change centers, nephrologist etc. Maybe I should use that time and energy to find out more about being my own durable medical supplier. If I can accomplish getting control over buying the machines, maintenance and supplies; I will never have to go through this again. If the center at home worked out it would be great for us and an open door for other patients; I give this some thought also. Anyone wanting to give their input into my situation is more than welcome.

Hi Marty,
I posted a message to the other thread with some suggested links to finding out more about becoming a Method II supplier. It listed me as “guest” because I was away from my computer long enough I was logged off without realizing it.

Marty I found a six year old article from Nephrology News and Issues:
I think you will find it interesting. The author credits people who helped write the article, and this is their company:
Durable Medical Equipment
So maybe you could talk to someone there who could give you solid information that is actionable. Then here is a link to a list of all the Medicare Providers in NY:
There is a search box and if you enter “durable equipment ny” you get a list that is not too long. Again there may be a business not too far from you that could provide information.

Bill, Thanks Again. I will make contact and see what I can learn.

Many a slip between the cup and the lip. So far progress has been slow. Trying to work both the center and own medicare provider at same time.
However in talking with the Rochester Center again; they aren’t sure if they are going to start a slow nocturnal program. They heard a new center was being built in the area and slow nocturnal was going to be offered in-center.
Now they question if they should start a program. I have no idea where this will end or when.

I forgot they also said the government was pushing for more home programs; anyone else heard this?

Hi y’all,

Interesting about the government “pushing” for more home programs. I’m not even sure what their mechanism would be to do this, and would love to know more about it if anyone finds out anything…

Also, I tried to post this before, but for some reason it didn’t work (maybe I wasn’t logged in?): I don’t understand how doing nocturnal home hemo 3 nights a week would save any money over doing it 4, 5, or even 6 nights a week, unless a new dialyzer is used at each treatment. Of course, there are incremental costs for using more dialysate, but once someone is trained and the machine is in the home, why should it matter financially whether it’s used 3 times or 6 times?

One more thing…even if the other clinic near you is starting an in-center nocturnal program, that still may not meet the needs of people who want to be HOME to do their dialysis (might or might not help to point that out to the clinic you’re talking to, Marty).

part of the cost of nocturnal is the person sitting at the computer monitoring. also there are the tubing, dialyzer, chemicals, saline and all the little bits and pieces, alcohol swabs etc. that add up.
in my case I saw a new nephrologist yesterday and we discussed the costs and the monitor is a big expense and not cost effective until at least 25 people in unit.
as to the government, they take forever to do anything. he went to a big seminar a few years back in Bethsesdal MD and left excited that there would be progress made and now, a few years later, still status quo.

I suspect the reason why the clinic is planning to do nocturnal home hemodialysis (NHHD) 3 nights a week is because Medicare will reimburse for only 3 treatments a week. Since the patient will be doing NHHD 3 times a week, the clinic will be reimbursed for the machine and supplies the same as for conventional home hemo or for in-center hemo. A patient doing 3x a week NHHD will use half the supplies of a patient doing NHHD 6 times a week.

I have talked with a number of clinics that offer NHHD and have attended meetings where people from these clinics discuss how they do NHHD. Although the program in Toronoto that started NHHD in North Ameria has offered remote monitoring, I’m not sure what percentage of clinics that offer NHHD offer remote monitoring now. I am aware that Fresenius is one of those that offers remote monitoring, at least in my area.

In 2003, an article in Hemodialysis International called “Evolution of Home Hemodialysis Monitoring Systems” by Diaz-Buxo, Schlaeper, and VanValkenburgh (page 353-355) discussed Fresenius’ NHHD program. This article reported Fresenius had 48 patients in 20 midwestern clinics doing 6-8 hour NHHD treatments every other day. These patients were linked to a remote monitoring location in Indianapolis. One screen monitored 10 patients. Two patient care techs monitored all 48 sleeping patients. During a one month period only 13% of the 571 treatments had any alarms. Almost 3/4 of these alarms were for changes in blood pressure or venous pressure that often resolved when the patient changed position.

Like your nephrologist, I think many clinics may be reluctant to start NHHD programs because they fear the cost of remotely monitoring sleeping patients would be too high. However, rather than every clinic having to have a staff member to monitor its patients, having multiple independent clinics band together to outsource remote monitoring for their patients could keep the costs of remote monitoring way down. Although this could be done by any organization or or dialysis corporation, the article states that Fresenius has the equipment to do hemo monitoring for non-Fresenius clinics as long as patients use Fresenius machines. Those of you interested in NHHD might want to pose this innovative and lower cost option with your nephrologists.

I suspect most patients worry about having a needle come out and bleeding to death while sleeping. The remote monitoring system could pick this up once blood pressure drops, but apparently no remote systems monitor for wetness on the bed. Therefore even those clinics that don’t provide remote monitoring can provide wetness detectors to wake patients up right away if there is a blood leak. I think this could ease patients’ minds about NHHD if remote monitoring isn’t available in their area.

Beth, I don’t know about all programs but in our program we don’t take BP’s all night. Just when we get on and off. So a drop in BP wouldn’t be caught. However, they do use monitors that detect wetness.

Does the wetness monitor notify you or is it hooked into a remote site where monitoring is done? From reading the article it sounded like the remote site couldn’t tell if there was wetness on the bed or around the machine.

I gather that the local NHHD program provides wetness monitors for patients and patients used them for a while. The nurse said that patients have told him they stopped using the wetness monitors because they were a hassle. This clinic uses a special taping system that is possible for one person to use to secure the needle (called Immobile FST, see http://www.moborg.com/fst_instr.html) and they use a clamshell to hold the connection between the needle and the line in place.

The wetness detector just notifies the patient. They are a hassle. Our patients use the securing system you mentioned. Catheter patients use locking boxing so the lines can’t come apart.

What kind of box are you talkling about? Who provided it? Or was it something they just created themselves?

Wow, you really pulled this thread out of the time warp, unregistered! Fresenius has developed its own, internal locking device to make it safer for folks to do nocturnal dialysis. If I remember correctly, Dr. Lockridge out of Lynchburg, VA, may have worked with them to develop it. The device is a blue plastic sort of “clamshell” device that fit over the connections between the lines. I tried for months to track down whether it might be possible to make this available to folks outside of Fresenius, but since it was specific to the type of lines they use, the answer was no.

At the Annual Dialysis Conference in Orlando this past February, folks from Mayo reported on a plastic dialysis catheter lock they’d developed to prevent accidental disconnects in the dialysis center (but also useful at home for folks who do nocturnal with a catheter). They are still fine-tuning it, but I’ve offered to list that in our Helpful Products Catalog (http://www.homedialysis.org/hpc/) if/when they get it on the market. Y’all will be the first to know.