Oh, I fully intend on calling her back when she returns from vacation. With this program I would need someone to train with me, because as she put it she’s the only one involved and she goes home at 2pm; there is no real monitoring. Don’t they have to have monitoring/support staff available? No, they don’t really have a program per say. I specifically asked what the setup was and was told she had not trained a pt. in a very long time, and there were no pts. currently on homehemo.
With the FMC program they insisted anyone with well and own septic have DI, not RO. DI being very expensive to recharge/clean is the extra expense they wanted me to pick up. I was/am even willing to put in a disenfection unit hooked up to whole water system. When she said we had hard water and that wasn’t compatible told her we have on demand water softening unit.
I was hoping that now that I’m on Medicare primary other rules would apply and they would have to take me. Husband already knows a great deal about the machine, and recently the tech. at the unit even showed him how to find the schematics. As to my condition, problems ect… he also has learned a great deal about dialysis and pitfalls so totally understands those things too. Doubt I could find a more supportive or eager to learn partner. Well, I knew this wasn’t going to be a peice of cake, but have to wonder at the same time why it has to be so difficult. Again, I think some units offer programs on paper, just so they say they have one. This unit is in a major metro area and so I’m sure if they really wanted home pts., and sought them out, their program would be bustling. For comparison sake it is a non-profit program, as was told by training nurse. Thanks for all your support Marty; it means more than you know! Lin.
Lin, When you run home hemo all they are suppose to have is a nurse available for you to call during your run time. The program in Syracuse had 2 nurses so they let the patients run anytime between 6am and 9pm. I can run during the day as a home patient because our training nurse works from 8 to 5 in-center so she can be reached if I need her. Hog was on the DI’s read the tech boards RO’s are better anyway. The better water carbon tanks are in the RO’s and they take out the chlorine. If you don’t have a Better Water RO with the carbon tank it is nothing to go down to a plumbing store and purchase a filter tank and get supplied with the right carbon filters. They are not $100.00. If the staff really knew anything they wouldn’t be talking like jerks.
Husband is licensed water treatment operator part time and can’t understand why the roadblocks in regards to water. Doubted that water tx. was the real setback, but now it’s happening again, so now we wonder if anyone with technical or water tx. background is even involved with these home programs. I would never want to overburden my home systems if that is the case, but when we’re talking about water tx. and disenfection I have some serious doubts to whether anyone really knows what is good, and what is not, or whether by now there is a better way of handling things. I should think there is a co. who has made a unit that addresses all the problems, at a price all can afford.
A tech. that for instance works in unit gets only a smattering of knowledge (involving water tx.) and then only as it involves incenter equipment and water treatment. This training nurse talked as if it was Baxter who had the people who make the decisions. She also said there was no monitoring, and she was the only one, and worked only till 2 pm so I would be limited as to when I ran txs… She also said she would have to check with superiors and see how much time they will allow her, to work on things. When people say they don’t have programs because no one ever asks, this could be the reason why! It’s so difficult to overcome the objections. No one mentions objections in regards to pd, incenter , or getting a txp, even though those things have drawbacks… and yet when one wants to do home hemo it’s like beating your head against a big brick wall. The only ones who support you and help you are those already on home hemo., and of course Dori and Beth… Lin.
Lin what I am trying to tell you is that it isn’t all that expensive and complicated. There is no more mystery in the water than there is in dialysis.
The RO units (at least the one I donated to the center) was around 4000.00
I think they have cheaper ones now. It really doesn’t matter what your husband knows (except it is great morale support) The dialysis machine and Water Treatment Equipment is considered Medical Devices and the home hemo programs are required by law to take care of these. The dialysis machines and water treatments have to be attended to by “certified” personnel. If my RO goes down they send me a another one by UPS ND Air we hook up the lines and I either send the broken one back, or wait until clinic and take it back. Once at the center the “certified” people repair it and do a water culture and it is then used again when needed. If a patient is closer than I am they sometimes go to the home to make repairs. All the fuss is totally eliminated when you have people that know their job. Don’t mistake hooking up the lines as a big deal all the connections are quick disconnects you just plug the lines in to the machine. At first is was Fresenius who did our dialysis machine repair. Then a couple of guys who were certified to fix Fresenius Machine and certified in water treatment started their own business. The center hired them to do our dialysis machine and they are great. The center personnel still take care of our water treatment. It really is simple. It is the uneducated that are making mountains out of molehills. At first I was totally overwhelmed and scared by everything I heard because I thought everything was a mountain. It just isn’t. Lin I could set up a home hemo program and I am
good at nothing but being a good organizer. You get a good training nurse,
“certified” techs and their are no mountains to climb just work to be done.
Why I mentioned that husband is licensed in water tx. and repair of
certain equipment is not because I would allow/expect him to repair, but rather to relate that because of his experience he realized they are making a mountain out of a mole hill! He has actually taken college credit courses and state exams for his residential and industrial licenses and so has a lot more training than any tech. I’ve met so far, at least in NJ. He (and I ) both realize that there are all sorts of methods to acheive desirable results, and none of them are (or more importantly should be) expensive. When I signed up for the FMC program through PineBrook unit and they started throwing roadblocks in the way in regards to the water tx. I had husband speak to the technician because he was much better able to counter the excuses why our home wouldn’t be suitable. The tech. was very knowledgable, but didn’t know near enough. Again though, no one ever visited our home to find out exactly what we have or do not have, and certainly no one tested our well water. We were just led to believe that all well water is icky, and all city water is not, which is proposterous. All water can be treated, and tested, and at a minimum cost. The reason they wanted the DI is supposedly because RO takes a lot more water, and would be a stress on well and septic. Lin.
the reason I chose Rogosin is because they don’t require a partner, but I feel that having one is a very good idea. I don’t believe you (I mean you, Lin) aren’t capable of bringing home the training and passing it on to your husband.
I know there are machines which use far less water but don’t know how available they are. as I’ve said before, a machine which can run a dialysis session on 6 gallons of water would be ideal. if your water is not suitable you could buy distilled water for that little usage.
no, they don’t make it easy on you.
That is why the training nurse gave me the number of AKSYS, but she misunderstood, thinking they provided home hemo. I wish I could talk the management at the unit I’m in to offer home hemo with the AKSYS machine. The social worker told me yesterday that the reason staff doesn’t mention home hemo is because they don’t want to get people’s hopes up, only to have them dashed.
We just got one of those nifty new front loading washing machines that uses 15 gallons of water compared to the 40 my older top loading machine used. I figure the water saved would be used on hemo. lol
Well Helen you know we already have the manuals for FMC machines, Critline, ect… Also have info. on the AKSYS and Allient Advantage machines. I wish the colleges would offer a course on all this stuff, and we could get credits for it.
The Bergen County College does give a PCT course and I almost feel like taking it and buying my own machine, but that’s not feasible. Hopefully if things continue to be a problem, units might consider the new technology of AKSYS and Allient for pts. like myself that live in “the sticks”. I hope things are looking up for you and home hemo. Lin.
I wanted to address Lyn’s questions regarding programs in NJ that offer home hemo. I have heard that Lillian Booth Dialysis Center will very soon be offering short daily dialysis on the Aksys System. There are many patients in northern NJ who want to do short daily at home and interest in this system is extremely high.
Lillian Booth offers conventional home hemo now. It’s exciting to hear that they may be offering daily home hemo soon. If anyone is speaking with staff there, please remind them of Home Dialysis Central and the Edit a Center option. Once we receive an edit notice, we make changes right away.
Lin, so after all this time, you have finally found a program? This is great! In the Epilogue of my book I mentioned you as a screen name, and said that you were still probably looking for a home hemo program. I guess I’ll have to go change it now. In my experience the unit had to have an on call nurse 24 hours a day. Although we generally dialyzed during the day it was still good to know. The technical staff were also always on call and they routinely came to the house to check things. We used an RO and had septic.
Marty, by the way the galleys are being redone and should have them to you soon. Sorry for the delay, I will email you soon.
Anyone interested in the northern New Jersey/New York area should call me!
I am the head nurse of the Lillian Booth Dialysis Center in Westwood, NJ.
Our phone number is (201) 664-6649
My email is kdavis@pvhospital.org
Our AKSYS program for home hemodialysis is approved and is open!
Please call me if you are searching for this service… I am in from Monday through Friday 7am until 3:30 pm.
Looking forward to hearing from you!
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