Dialysis by and dependence on a trained carer at home : This could be an option for those who had no one at home to help when needed. My concern, at least here in the USA, would be who would the carer be? A nurse (too much $$), an LPN ( too much $$), a tech maybe? It would still be costly, but less so than the other two options. My problem with techs would be my past experience with them, just one of the reason I had to get out of the center. I was in fear of the techs. Some techs followed protocol some did not, are things the same in Oz, as to techs, nurses etc?
Self dialysis with self control, independent of a carer : I did this when I first came home and had no problems. What I did not know or understand is that it caused a great deal of stress on my wife. I now know & understand her fears. And to be honest, one of the big, big pluses since going to nocturnal is the fact that my wife is a great help to me and she now sleeps better ( I sleep great also). We cut out one of the stresses in her life and in turn helped rid me of stress. I am confident that in case my wife were sick or had to go away for a time, I could still do dialysis on my own. Prof. John - how is the set up there, like here or does each center makes the call as to home dialysis ?
Home visits by your renal team : I think the costs with this would be way too much. As folks here in the USA know, traveling to centers that have the program that fits your wants and needs can be a great distance. Having the consumer come is cheaper for the dialysis company and that is the bottom line. We don’t get paid for all the work we do, or the travel time, or a lunch account. Plus, in my case, my health is so good I find the long trip I have to make each month time consuming and costly (gas, no PT to center)
From my discussions with the good Prof is that they don’t train caregivers in Oz whereas in the U.S. it seems a caregiver has to be trained along with the patient. So he’s not referring to outside care, but expects patients to self-care. That’s the juxtaposition of the two options:dialysis by and dependence on a trained carer at home, or self dialysis with self control, independent of a carer.
Personally I prefer self dialysis and not having to depend on any body eles’s assistance. However, I have to admit I woulod have been in real trouble a couple of month’s ago when I lost control of a flying fistula needle and needed my wife to shut off the pump. I had blood literally squirting all over the place while watching a football game.
I’m sure that the training of a caregiver was for the purpose of protecting the dialysis company and clinic from liability.
Bob, I’m not sure if I understand your position on going to your center. Are you saying the monthly visits are unnecessary. If so, I disagree. I think the least a patient should do is visit with their renal team which includes your nephrodoc and RN’s and possibly a dietician and social worker. That’s the time one should get the results of the monthly labs and have any med adjustments made.
Here in Australia, most, if not all,of the dialysis nurses I have met in the 7 units I have visited so far seem to be very experienced and love their work. Many seem to be in it for life. They are a special breed and because the majority are in Government funded Public hospitals and in a good Union they all basically have the same working conditions and have undergone extensive training. Not saying that there isn’t room for improvement and obviously the metropolitan hospitals are better serviced and funded than their country counterparts due to the numbers of patients they have.
The technicians that service my machine are brilliant and drive hours to get to me as soon as I need them. I love them all!
I can’t speak for the Prof , of course. I am just assuming that he is trying to gauge who wants total independence, if possible, and who prefers to have a “sidekick” when needed (like my hubby) or a carer that does everything. I , like you was determined to do everything myself when I came home, but we both feel more comfortable now, sharing the load and yes, my hubby has saved me on more than one occasion eg dripping dialyser all night on Nocturnal… Sleep for us came after two years of finally feeling confident with Freni and my needling and sharing the load.
It was our personal decision to make. Here in Aussieland, most training units give consumers the choice of how much they a partner to be involved, although they probably prefer there to be an assistant . I know a number of people that dialyse without any one and then others that leave their partner/carer to do everything.
I love having home visits and so do the nurses because it gives them a break from the hospital setting ( and I make a pretty good cake and cuppa) even though it is over an hours drive away. I usually see them at home 3 times a year and they will come out more if I need them. They like to see me dialyse at home occasionally too, to see if I am following protocol. I even had a nurse that lives in the same town as me(but not from my renal unit), jump out of bed at 7am on a Saturday morning to come over and help me put my needles in when I was having difficulties. (as I said I love 'em)
Beachy are you saying that your team comes to only 3 x a year? Or do you have to go to Dr and team on your own also?
Rich
What I’m saying is that unless my labs would have nigh or low #'s then why go and see three say the same thing each month. What would be wrong with phone call?
I want to wait to hear what Beachy has to say on the three trip by team a year…
bob obrien
[QUOTE=beachy;14905]Gidday Bob
I love having home visits and so do the nurses because it gives them a break from the hospital setting ( and I make a pretty good cake and cuppa) even though it is over an hours drive away. I usually see them at home 3 times a year and they will come out more if I need them. They like to see me dialyse at home occasionally too, to see if I am following protocol. I even had a nurse that lives in the same town as me(but not from my renal unit), jump out of bed at 7am on a Saturday morning to come over and help me put my needles in when I was having difficulties. (as I said I love 'em)
Cheers
From Rich Berkowitz
Bob, I’m not sure if I understand your position on going to your center. Are you saying the monthly visits are unnecessary. If so, I disagree. I think the least a patient should do is visit with their renal team which includes your nephrodoc and RN’s and possibly a dietician and social worker. That’s the time one should get the results of the monthly labs and have any med adjustments made.
Hmmm Bob Can’t say I have ever thought of them as a team. I visit my neph for usually nothing more than a friendly chat once a month as my bloods are always stable(touchwood), I take my blood to the local pathology office and the results are sent to me, a home training nurse visits 2 to 3 times a year (more if I want them and we chat on the phone) and the machine tech comes when necessary. I have never seen a dietician, social worker etc so I personally wouldn’t regard them as being essential for my care. I try and stay away from the hospital/ home training unit if I can. But occasionally I like to go and touch base and meet those that are in training. Mine is only a small regional unit with around 30 home patients, some hundreds of miles away. i would like to start a support group in my area but it just isn’t really possible.
I must say my biggest support, when I started Nocturnal at home, came from this forum. The advice I got from Dori, Gus, Bill, Pierre and others got me through those horrible first months of feeling quite isolated.
Cheers
The set up you have sounds more in line with what would be better for us( at least me). You see your Dr once a month , and a nurse stops in 3x a year. More if needed. Here we must see a soc. worker , dietitian, nurse and Dr.once a month. The dietitian ,nurse, and Dr all go over the same lab results. The soc worker makes sure your ok in the head.
bob obrien
[QUOTE=beachy;14912]Hmmm Bob Can’t say I have ever thought of them as a team. I visit my neph for usually nothing more than a friendly chat once a month as my bloods are always stable(touchwood), I take my blood to the local pathology office and the results are sent to me, a home training nurse visits 2 to 3 times a year (more if I want them and we chat on the phone) and the machine tech comes when necessary. I have never seen a dietician, social worker etc so I personally wouldn’t regard them as being essential for my care. I try and stay away from the hospital/ home training unit if I can. But occasionally I like to go and touch base and meet those that are in training. Mine is only a small regional unit with around 30 home patients, some hundreds of miles away. i would like to start a support group in my area but it just isn’t really possible.
I must say my biggest support, when I started Nocturnal at home, came from this forum. The advice I got from Dori, Gus, Bill, Pierre and others got me through those horrible first months of feeling quite isolated.
Cheers[/QUOTE]
I"m the helper and still tag along with my partner when she goes in to the clinic and sees the Nurse, Social worker, and Dietitian… then later in the month go with her to see the Neph…these vistis are necessary to fill the supplies that the centers give us. Also to give medications that change with blood test results (EPO, & Iron). I think that this is the normal procedure for everyone on dialysis here in the USA that is at home. Think even when my partner was doing PD she had to go in once a month to see her team at the dialysis center. The inconvience of going in once a month is a lot better than going in 3X a week and getting dialyzed there…
I think later when and if they get atleast 25% of the patients with ESRD doing dialysia at home, this once a month visit to the clinic will probably be changed to quarterly and you get your supplies when you drop off your blood… They wouldn’t have enough personnel to schedule all those patients to see their team monthly… So hope more patients learn about home dialysis…
HemoHelper
[QUOTE=bobeleanor;14914]Hi Folks
Thanks Beachy
The set up you have sounds more in line with what would be better for us( at least me). You see your Dr once a month , and a nurse stops in 3x a year. More if needed. Here we must see a soc. worker , dietitian, nurse and Dr.once a month. The dietitian ,nurse, and Dr all go over the same lab results. The soc worker makes sure your ok in the head.
We only go to clinic once a month and see the DR, Nurse(our contact), Social Worker, and Dietician.
Supplies are also picked up at that time.
We draw bloods 2 times a month. Beggining full panel, and water cultures; middle of month PTH, calcium and HGA (hemoglomin).
The full panel is drawn the wed. of the first week of the month and sent out FEDX to Spectra. If we are lucky we have numbers on Friday. But diffently by clinic on the following Tues.
Mid months are also drawn on Wed and than I call for report on Fri and if not in than on Monday.
We can call any time we need or question anything.
Rubin Center is the TOPS!!!
Pat
Bob
After discussion with a medical professional in another state of Australia where the home dialysis uptake is also high thought you might like to hear how they do it too. Slightly different than in my small regional unit. I must say I like their way better! I like the idea of more regular phone contact and more machine tech visits than I have been getting.
They see stable home and satellite patients every 8 weeks … there’s no need to intrude more if all is good. That’s pretty much the Oz mean too. Bloods every 2 months - patient self-taken and self-spun both pre- and post-. The 2 month catch up is as much a chat as a check of the bloods, (rarely) a change in medication, a repeat of scripts and a check of volume and a dry weight check.
The home nurses go out about 2-3 times a year unless there’s an issue and the machine techs go once every 6 weeks for a service call to machine and r/o and filters … or more often if there’s a reason (rare).
They support by phone usually weekly and have an overnight on-call phone-in nurse on call every night of the year. She/he gets a call about one in every 3 nights from any of the 29 home NHHD patients. These calls are usually minor and none have been disasterous in quote">7 years and now >120 patient years of experience".
[QUOTE=beachy;14925]Bob
After discussion with a medical professional in another state of Australia
where the home dialysis uptake is also high …
They see stable home and satellite patients every 8 weeks …
Bloods every 2 months - Mel.[/QUOTE]
And which particular state was that, Beachy??
I was doing monthly bloods, which is the same as for in-center folk, getting them taken at QML before I got home and then taking the ‘after’ test tubes into QML after coming off next morning. Neph visits went down to bi-monthly, if all was O.K. Renal nurse visits at home were about 4 a year; phone calls roughly monthly. The techs were pretty prompt in coming if you had probs & the water-quality team sent someone monthly.
The preferred thing for home haemo was to train the couple, but they did have several of us ‘lone’ dialysers & were not reluctant for us ‘loners’ to do it.