ridgerunner
Joined: 11 Jan 2003
Posts: 101
Posted: Sun Aug 24, 2003 8:52 am Post subject: home dialysis and selfcare
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this the answer to our problem in dialysis. some people are not going to any thing for themselves but the majority will. if it were explained to them in very blunt term and the personal cost to themselves in terms of life span the way they feel and as well as the quality of life. the adverage person does not become a stupid idiot although they have less mental ability due to the toxicity and lowered oxygen carrying of the blood. almost all people want to led a normal life. self care and home care if done right can reduce the labor costs which is the major cost of dialysis. this can be used to increase the quality of treatment.
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jfwag
Joined: 11 Jan 2003
Posts: 140
Posted: Mon Aug 25, 2003 3:00 am Post subject: I would...
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have to agree with most of what you sya with the exception that "majority" will do things for themselves. I have found the opposite but that might only be the area I am in and the people I have met on dialysis. Too many people haven't a clue that home dialysis is even available or that it can actually be done.
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Lin
Joined: 28 Oct 2002
Posts: 337
Posted: Mon Aug 25, 2003 5:50 am Post subject: The majority
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of the pts. where I dialyze are seniors who live in nursing homes. The ones who live at home or with adult children have families that don't even care to learn about their txs. and diets; often labs are way off because of it. <
>I'm one of the few pts. who is a good candidate for home hemo but got the
ush off from FMC. They only have a few home hemo pts. in the whole NW NJ! They don't openly offer it, or encourage pts. to choose it. There are no
ochures or posters, or info. on who to contact. It's as if they just don' want anyone inquiring about it! I have to wonder why. Lin.
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Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Mon Aug 25, 2003 8:43 am Post subject: The why's of it.
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I am not sure why Lin but I think a lot of places don't offer it or get into it just because they are too lazy to do it. When you can herd everyone into a center, then everything can be dealt with in one place. When you have home patients you have to have service personal travel to the homes to fix the machines. (Water and Dialysis) You have supplies delivered to different addresses. And you have to contact them at home can't wait for them to conveniently walk in and sit down to tell them they need <
>to increase their EPO. Not to mention you actually get an appointment with the staff including nephrologist. They can't just walk by in the center say hello and charge for an office visit. Maybe someday the convenience for patients will outway the convenience of the centers but I wouldn't hold my
eath on that one. I'm sure it takes more effort to work with home patients than it does the patients who just walk in at the prescribed time, sit down, get up when it's done and go.
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ridgerunner
Joined: 11 Jan 2003
Posts: 101
Posted: Mon Aug 25, 2003 9:50 am Post subject: home and self care
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as long as the public excepts bad treatment the jiffy lubes will be around. some of the medical myths 1 if you are old you are stupid. most old people are over medicated and medication last much longer in old people. 2 dialysis patients are retarted and do not care and also poor people do not want to do for themselves. i was in practice for 43 years and i found out the size of the patient pocket book had nothing to do with their desire to live or their to help themselves if you took the thime to explain the benifits the would get and how simple and safe it was
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FRN
Joined: 24 Feb 2003
Posts: 25
Posted: Mon Aug 25, 2003 11:08 am Post subject: Education
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Ridgerunner, you are right on a lot of this. If patients were educated from the very begining about home hemo, the benefits, and supported in every way by the companies, then I do think more people would chose to do it. <
><
>But we Americans are a society who wants everything done now with instant gratification. We also want to be taken care of with little thought for all that is involved and how it affects us. The attitude I often see with younger patients is 1, of denial that they have a chronic disease, and 2, the patient is determined not to let it affect or change their life in anyway shape or form. Unfortuneately this doesn't last long as the disease makes itself felt along with it's physical affects. By the time someone gets what I call a "wake up call", the physical damage has been done.<
><
>That is one reason Arlene asked me to post the educational question column. It isn't as good or as effective as dialysis education should and could be if every patient was educated from the very begining. But we hope that it has helped those who are looking for answers to common dialysis problems.<
><
>Another reason the companies don't like to push home hemo is that they don't make as much money off the home patients. Home patients do better and need fewer medications,( EPO) fewer labs drawn, etc. And slow nocturnal patients, seem to need even less. They would much rather have all you "cash cows" in the corral (unit), so they can "do you all at once, together" so to speak.<
>Companies like RCG who boast that they make most of their profit from selling EPO, are not going to support home hemo patients as they can't manipulate the EPO at home like they do in the units. It's all about .<
><
><
>
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Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Tue Aug 26, 2003 1:20 am Post subject: home dialysis
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It would be real simple to get home programs going if the attitude on both sides would change.<
>Patients need to believe they can do it and centers need to believe they can do it. The centers who have started slow nocturnal programs surely knew they would have to put an effort into setting up the program and solve problems along the way. The patients who accept the responsibility realize they also have issues to resolve like space, time for setting up, cleaning and learning to run the machine. It takes "effort" on both sides for success. From my experience with the human race rather it be in dialysis or life in general most people will settle for much less than what they want just because to succeed requires effort. If you put 10 nephrologist in a row and I could interview them; I could tell you right off the bat who would start a program and who wouldn't. Put 10 Nurses in a row and I could interview them and tell you which ones could head a home program and which ones couldn't. If you take a look at our Nocturnal program the percentages are somewhat revealing. More than 70% of the patients had at least 1 hr. to drive to enter into the program and many have more than that. But they were willing to extend the "effort". You would think the patients who go to the center anyway, would hold the majority of patients being in the program because it would be convenient for them. But not so.<
><
>Having said all this I still believe their should be a mandate from the government that there has to be at least 1 home hemo program within a 100 mile radius. I don't believe it's right that the patients who are willing to put in the effort to take care of themself are denied the opportunity because of location.<
><
>When you take into account the number of patients willing to extend effort to get anything, this will be a long time in coming. Because
it is only a minority of patients who would put any effort into righting their government reps., or facing their centers to push, push, push for the programs.
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Lin
Joined: 28 Oct 2002
Posts: 337
Posted: Wed Aug 27, 2003 12:11 am Post subject: Looks good!
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The problem (as I see it) is that companies PRETEND to have programs, but do whatever they can to keep pts. out. They give the appearance of having a program so they can comply with the rules, but they really don't do anything to encourage pts. and in fact (my case) do whatever they can to discourage pts.. At least that's what I encountered when trying to enter the FMC program. I put no roadblocks in their way; it was the other way around.<
>The new Canadian study clearly shows it costs the units far less to service home hemo pts.. than in center pts.. Apparently the US isn't paying any attention because anyone I've spoken to about it sais the units don't offer it because it costs MORE; how can that be? Spin, spin , spin............... Lin.
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Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Wed Aug 27, 2003 1:34 am Post subject: Cost More?
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Home hemo can be done and it can be done with a profit. It is already being done across the U.S. It is only speculation as to why the units aren't starting programs or progressing toward slow nocturnal or daily. The only thing that is obvious to me is not the government, networks, nephrologist, CEO's, DON's etc. don't give a hoot about the life of dialysis patients. Not to put the blame all on one side I have seen many patients and family members who would only do home dialysis if it were handed to them on a silver platter.
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Lin
Joined: 28 Oct 2002
Posts: 337
Posted: Wed Aug 27, 2003 2:51 am Post subject: Not me!
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I never expected anything on a silver platter! I did everything asked of me, and at my expense, but was not willing to pay an extra monthly fee that could be in the hundreds of dollars. I didn't expect anyone to help, and was perfectly willing to run the txs. myself with the help of monitor. Other than initial set up I didn't expect anyone to come to my home to help. I know pts. used to have helpers, but I wanted to do my own care. My husband was willing to cannulate as because of the location of access might be difficult for me. The training unit is located far and in an area that is very congested, but I was even willing to travel there. If a person is willing to take responsibilty for their txs. it shouldn't be any more difficult to do than in-center, but for some of us it is. A new unit will soon open about the same distance from my home. I'm looking into it to see what they have to offer. Lin.
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Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Wed Aug 27, 2003 4:40 am Post subject: Exception to the Rule
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Lin, I know you are an exception to the rule. I wasn't implying that you weren't doing your fair share and more.......you are!!! It's just that the majority of the patients I talk to get all excited about having hemo at home then poop out when they hear they have to do something. Unfortunately because more patients aren't willing to do it, there isn't much incentive to start programs or enough heat on the centers to start programs. I think it is terribly unfair that patients who want to do their own at home can't get the opportunity unless they live in the right place. I really don't think it is right that dad has to travel so far to get slow nocturnal; it should be more readily available. But for right now I am at least glad we could get into a program.
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Lin
Joined: 28 Oct 2002
Posts: 337
Posted: Wed Aug 27, 2003 8:35 am Post subject: I know
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that you didn't Marty. I just wanted to post on it because all too often I hear posters say that home hemo isn't available because pts. don't want it. I think that is a partial truth. There are people in the unit I go to that aren't even willing to have the machine turned toward them, but too there are others who I'm sure would do home hemo if they had support and encouragement. The social worker twice asked me if I wanted to do pd or get a transplant; not once did anyone in the unit ask if I wanted to do home hemo. I was willing to be a leader, and figured if I showed fellow pts. it could be done, they would follow suit. I even told staff once I learned would be willing to be a liason, for free even lol I didn't count on the glitches, but hey things change! A new unit is coming to the area and maybe I can go talk to them about starting a program. It's not FMC, some renal advances/services something like that, based in Colorado. If anyone knows of such a co. speak now! <
> You and the others here have led the way, and I sure would hate to see a
eak in the link. You all knock yourselves out for no other reason than to see others do well. I find that is true of all home hemo pts and families that I have spoken with. If you mention you're interested they will knock themselves out trying to help.<
>I have good labs and such but the folks on home hemo have so much better; it's just gotta be healthier for them to be doing so well. <
>No, your dad shouldn't have to travel so far, and I wish for him and for you that a closer unit will offer a program. Lin.<
> <
>
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patient
Joined: 29 Oct 2002
Posts: 137
Posted: Wed Aug 27, 2003 9:29 am Post subject: The real problem
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Maybe they are afraid that patients will run the tx better then them! I feel the govt should pay for helpers as there are patients who would choose home hemo if they had support. NW Kidney Center offers helpers. Who pays for it?<
><
>Although families are supportive to one degree or another, often patients who want a home opportunity don't have a supportive enough family or the family can't be there to help often enough due to work etc. Make it more accessable and more patients would choose home txs.
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Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Wed Aug 27, 2003 3:44 pm Post subject: Home Hemo
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Just thought I would let you know. We have a 79 year old man who has started doing his own home hemo dialysis on the Askys Machine. He has very little help at home. Not to mention to get in the program was also a 5 hr. trip for him. He was doing PD and felt like crap so decided to make the change to a daily or nocturnal program. The training was about 2 weeks.
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Please dont
Joined: 27 Aug 2003
Posts: 1
Posted: Wed Aug 27, 2003 5:17 pm Post subject: make the mistake
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of judging how patients feel inside Marty. No two patients feel the same. Each one is individual in what he can handle. With this disease one can feel pretty ok one day and suicidal the next. Some patients can drive for miles when they are sick and some can't. Some have transportation and some don't. Would your dad have handled his disease totally on his own if you had not supported him? Not everyone is equal in physical and mental capability, support and financial ability.
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