To make home hemo dialysis any sort of a reality to an increasing # of patient then we are going to have to find a way to work outside of the system
as George Harper had too. He had been independently doing his own dialylsis for years and traveling. At the drop of a hat the unit management was changed and the priviledge was taken away. It was only through becoming his own provider that he got it back. The real question isn’t why aren’t patients doing home hemo. The real question is why aren’t the programs available. Bill, I know it doesn’t seem as though enough patients are interested but I have some faith that it will grow. Our nocturnal program is seeing a steady growth pattern of patients wanting to be in the program. I can remember the time when they didn’t know if someone was going to call and ask but now the calls are steady. They don’t have a waiting list of 10 or anything but they usually have some ready to start when one is done. And they have beefed up to handle more than 1 patient being trained at a time should the situation arise.
There aren’t enough programs, and supposedly the reason units aren’t offering them is because not enough people are interested. Well, I for one have to wonder if this is the truth. Neither of the two units I’ve been in ever offered me home hemo, and one of the units was an FMC unit that supposedly has the largest home program. When I got discouragement because of the well/septic problem I was very critical telling management (if it was such a problem) they should be putting that in their brochure so that prospective pts. would know what to expect, waiting for their reply because as you and I both know many without town utilities are doing home hemo. However, it is an added expense, and perhaps is more cost effective to have only home hemo pts. that don’t require extra equipment and monitoring. However, I think before they give someone advice should test water first instead of assuming it’s a problem. Even the “city” water near where I live, comes from wells, the only difference is chlorination and that’s not a huge problem, even if one has their own well. In fact, newer homes where I live all have disenfection, it’s the code now. You’re right Marty, it’s bs all around. I’m so disgusted I’m ready to call every unit back (didnt keep hard record) and ask again about home hemo, keeping track and putting the names in a letter to CMS showing them that things aren’t working the way they are supposed to, all smoke and mirrors. Lin.
Lin, There really isn’t much extra expense if you have a well and use an RO.
Our nocturnal program gave up the DI tanks for those on City Water because it was less expensive to have the RO’s. Although the initial cost of the RO is more the maintenance is far less. You don’t have to keep changing them. The only additional cost a person on well water “might” have is that they need to change their filters more often. I know when we started we had a very small water softner given to us as part of the program. I changed filters alot more than other patients. However we installed a larger water softner for the whole house and it cut my filter changes substantially. This is why I question the validity of the places that say they have home hemo programs. If they were really into it they would know this stuff. I have yet to hear of 1 patient that entered our nocturnal program that they couldn’t take care of in one way or another.
The center you’re in probably wants pts. in their program, and for some reason the two I’ve contacted don’t. They still have the certifications and are listed as having the programs, but aren’t really knocking themselves out to get pts. to apply. I’m not perfect, not a rocket scientist, ect… but trully believe that if they can train pcts, they can train me too. I have what they have, a desire to learn. Perhaps I have more at stake because for me it wouldn’t just be a job or career choice, it would be a lifestyle. It would be affecting my very life. My opinion (and have no fact to back up, so just my honest feelings!) is that they couldn’t find another reason to turn me down, so used the well/septic excuse, but we all know it’s just an excuse.
Pat emailed me inviting me to come up there to the Rubin Center. Boy oh boy, if I lived closer would be packing a bag lol I’m glad that you both have what sounds like a super program up there. Who knows, maybe it will spread. Do you suppose the Rubin Center would be interested in coming to NW NJ, or at very least Orange County NJ? I know of at least one prospective pt.! Lin.
Have to believe Rochester doesn’t want patients either they never called back. They didn’t even offer an excuse. Guess they can’t find one when your already trained and already have the water setup installed and working.
I’m hoping someone somewhere comes up with the perfect setup that can be used at a minimum of fuss or cost (dreaming?)
The reason given for the DI costing more was because of the upkeep. We did check and it is costy to change them out, but of course depends on one’s water, minerals, iron content ect. how often that would need to be done. Yes, we have a whole house on demand water softener so that would not be a hurdle.
The DON called a few units today that she knew had programs. She was told both weren’t taking on any more pts. and were just keeping the few they had. The nurse from the one unit will call back when she comes back from vacation. I’m still hammering away, hoping for a break! Lin.
Lin, Seems like a step forward if at least the Don is trying to help.
Hi Marty, I asked for her help because she made it known she has some connections and offered to call around. I didn’t know if she would have the time, but today she came over and told me the news. I’m trying really hard to kind of not focus on the negatives. Maybe I’m beating a dead horse, but unless I try will never know. Even if I can’t yet find a program, I want to become involved in getting more programs, and this site certainly has made that easier to do. Thanks again Marty for being willing to share a good thing with others! Lin.
Lin, I really want to see you get into a home program. You are a good patient advocate and what you experience yourself will not only benefit you but others. I haven’t hit the lottery yet but I have you and the DON in my prayers. There is one thing I think the both of us know for sure patients don’t really have the right to choice of modality and it’s way too hard to get it. I’ll be honest I couldn’t have gone through what I did to get dad into slow nocturnal if I had also been a patient. It was emotionally and physically exhausting. I was up all night trying to collect phone #'s to make calls and find leads to programs. I am not a big person when I started the journey my weight was 125 when I finally (over a year) got into the program my weight was 95. My friends would look at me and say; I don’t even know if I could go through what your going through if it was for myself. Nobody could understand the lack of support or the lack of programs. It doesn’t make sense to those who aren’t familiar with dialysis and to some of us who are.
Hi ya Marty, You know that I have the utmost respect and admiration for what you’ve done. I can only imagine how hard it must’ve been for you, especially since you didn’t get much if any support, and there were nay sayers. I know too that you love your dad enough to want the very best for him. When I first came on another board with problems and concerns it was you who said “hey why don’t YOU do home hemo”. True, I’m not on it, but have listened to you and others, and too have read the studies you pointed out to me and seeing what I do believe in it. I want to help make it a choice. Always open to suggestions on how to do that. Now, go put your feet up lady, and that’s an order. Gosh, with all you have done and do now you deserve a break.
For comparison sake your weight is almost my dry weight lol Mom was short and fat, dad tall and thin, I’m tall and fat lol Gosh, they said I was supposed to lose weight on dialysis but have gained. Trying to peddle my butt off on exercise bike…Lin.
Lin, Good advice. I’ll take it.
Hi Lin,
I’ve been thinking about efforts to try to find a clinic that offers home hemo. It sounds like distance from the training clinic is one of your barriers.
When I started working with dialysis patients 26 years ago, we had patients from throughout the state of Kansas. Some lived way out in western Kansas. They came to the Univ of KS Med Center near the state line in eastern Kansas (several hundred miles) to learn home hemo because their only other option was in-center hemo. These patients had labs drawn locally and results sent to the hospital. They came to clinic appointments every 6-8 weeks. I don’t know if this would be possible in your situation, but if you found a clinic that offered the treatment you wanted and respected your ability to learn it, maybe it would be worth driving a longer distance to have this.
If it’s the training time, perhaps you can do things that will save you days of training time. Ask your DON to let you read the training materials they use to teach new nurses or technicians about dialysis. If you were in a home hemo training course, you’d have to learn this basic information and it could save you time in a future home training program and give you a sense of control over your dialysis no matter where you dialyze.
Do you know how to operate the dialysis machine, what the buttons and alarms mean, how to string the lines, etc.? Machines are slightly different, but they all do essentially the same thing. Some of the newer machines are much simpler than the machines that are used in-center so if you learned how to operate your in-center machine, you’d be a step (or more) ahead.
Do you know how to do your own sticks? If not, this is something that you could ask a nurse to teach you and it is something you probably should learn to do if you want to do home hemo. Most home hemo programs want patients to use their partners for extra hands but they want the patient to take primary responsibility. Although most clinics require a partner for a home hemo patient, some don’t for certain types of home dialysis. I’ve known patients who were unsure if they could learn how to do their own sticks, but when they did, they felt much more in control. By doing their own sticks, they didn’t have to worry about who was putting them on dialysis. Most have been proud of how problem-free their dialysis access has been.
So far as the water system, I know that Medicare will only pay for either an RO or DI, not both. So far as well water, you might want to read this article from AAKP Renalife magazine about nocturnal home hemodialysis (NHHD). It was written by Mary Lou Pederson, a nurse at the Northwest Renal Network (covers AK, ID, MT, OR, and WA). The article states explicitly that people that have well water can do NHHD.
http://www.aakp.org/AAKP/RenalifeArt/2003/finalwishes.htm
Hi Beth, Thankyou so much for both the encouragement and information.
The reason it’s not feasible to travel a great distance or relocate is because I have a son at home who is chronically ill. He’s not younger, but does depend on husband and myself as he’s no longer able to drive ect… As husband works long hours and days is unable to take off from work to train for months. He is however able to take off a vacation day here and there or even a few days to train to help with cannulating as access is in upper dominant arm. I would be amenable to setting up and running tx. but the program I’m looking into doesn’t have computer monitoring and requires a fulltime partner, and this partner would have to do the training right along with me. The first program (the one that turned me down because of the well and septic concerns) was an FMC program, slow nocturnal with computer monitoring. That setup would’ve I think been perfect for me and my family. I’ve found a unit in Elizabeth NJ too, but think it might be the FMC unit (moved) but will check it out.
Thankyou for the link; I think I’ll print out the info. to take with me when I visit units to apply just in case the well/septic thing becomes an issue again. I never trully believed it was an issue, just a roadblock that was thrown in my path. I’m Medicare primary now and wondering if that will make a difference in whether they will have different rules now than when I had private ins. primary. Thanks again Beth;you’re a doll! Lin.
because I live in south NJ and my dialysis unit is in upper east side Manhattan my transplant unit wants me to find a nephrologist here. turns out the center they recommended runs a short daily program and I may be able to transfer. since I have had problems with various things it would be beneficial to have a closer center. my appointment is 9/16 and I will report how it goes. I don’t have any real info yet.
but if there are centers here in south NJ there may be something in NW NJ. is there any central place to look for them.
Hi Lin,
I’m glad that you found the info I posted helpful. In my experience, although many clinics require someone to be present during a dialysis treatment, many times that person is in the home, but not in the room 100% of the time. Some clinics train helpers less time than they require patients to be trained. A few clinics do not require a helper for home hemo. Some clinics have remote monitoring, but most do not. It seems to me that the remote monitoring is more likely with nocturnal home hemo programs than with conventional or daily home hemo.
Have you checked the Home Dialysis Central database recently? We recently added FMC clinics, including 3 home hemo programs in NJ – Englewood, Phillipsburg, and Newark. Sorry my NJ geography isn’t good enough to know if any of these are near you. If you find that the clinic in Elizabeth offers home hemo, please ask them to let us know. The only clinic we have listed in Elizabeth told us they only offer PD.
Hi Spiderwoman,
The Home Dialysis Central database of clinics is where you should be able to find most of the home dialysis programs that exist in the US. If you search for your area and check boxes for any of the treatment types you’re interested in, you should get a list of clinics that are in that area. If you’re near the border with another state, you may want to check more than one state for home dialysis programs there as well. If you happen to talk with folks from clinics that are NOT on our database and learn anyone offers home dialysis, please suggest that they notify us to add their clinic to our free listing.