patientwife
Joined: 18 Jul 2003
Posts: 47
Posted: Thu Aug 28, 2003 1:17 am Post subject: Home Dialysis and Selfcare
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Home hemo is but one tx option (if available/accessible) and does not meet the needs of all pts, who are entitled to make tx decisions based on their individual circumstances, knowledge, and comfort. This pertains to traditional in-center hemo, as well.<
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>Big questions are: What can we do to encourage development of more home hemo programs? What can we do to facilitate use by pts?<
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>Couple of suggestions: <
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>(1) Formulate questions-statements (re selfcare, home hemo, etc) for inclusion in CMS pt survey instrument; <
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>(2) Develop strategies to educate pts, families and public about home hemo, benefits and tx outcomes, and cost effectiveness/savings to public via reduced Medicare/Medicaid expenditures. (Thought is not necessarily about mass-communication strategies, but rather information-sharing/support-building at local, grassroot levels).<
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>Lastly, who is willing to work on a Self-Care Treatment Options Work Group? (This WG will include home hemo.) Please e-mail Arlene and let her know.<
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Lin
Joined: 28 Oct 2002
Posts: 337
Posted: Fri Aug 29, 2003 12:14 am Post subject: Great news!
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That's super Marty! I used to work in homecare and what I noticed is even if someone is capable and has the desire to help themselves it's not possible without support, and that is the support of medical personell, family, and even friends. The pts. that had support all around them did the best overall.<
>As to helpers, it would be good, but even better if the pt. and their family could do the care, or at least be the backup. My reason for saying this is because I worked in homecare for many years and know all too well that although it doesn't happen often sometimes an outside caregiver for what ever reason is not able to visit the pt.. <
>Maybe we are looking for one answer, and should be looking to a collection. For instance, the gent. Marty mentioned is using an AKSYS machine, which is reportedly easier to use for the home pt.. Perhaps if these machines were more widely available home hemo would be too! Then too there is the ALLIENT machine, which is very similiar if not better than the AKSYS. No independent water system is needed, and regular tap water is treated and used by a cartridge. I don't know how the cost compares to a regular machine, but certainly there is no setup involved in the home so that saves money. <
>I'm going to speak to the social worker this coming week and ask her if we can hand out a survey asking how many people would be interested in doing home hemo. I will offer to type up one if she sais she's too busy lol I'm just really curious to see what the reaction will be. Will let you know. My NEW long term care plan will also include (if I must write it in myself) the option of home hemo, as now there is no mention of it, just that I was offered but declined pd ugh! Lin.<
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Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Fri Aug 29, 2003 12:21 am Post subject: My post
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The post I made wasn't intended to second guess how patients feel. I was just trying to point out that use of the Askys Machine was easier and therefore a better choice of home dialysis for some patients. No more than I can guess how patients feel; I can't second guess my father. Could he or would he have done it without me.. I don't know. But I do know he needed my assistance in finding a program as he doesn't use a computer. It has never been my intention to push home hemo down anyone's throat. I believe it should be choice. But as I see and learn things such as the Askys machine I pass the information on so patients who would like home hemo have more knowledge, in the event home programs become available to them. The 79 year old I spoke of had orginally thought of slow nocturnal. He changed and went to the Askys because the training was shorter and there was alot less to do in terms of cleaning.
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At present
Joined: 29 Aug 2003
Posts: 1
Posted: Fri Aug 29, 2003 4:46 am Post subject: HH
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is only for those who have good circumstances. They must have an adequate home, finances and support. That knocks out alot of people. The govt could get many more rolling in hh programs if it would fill in some of the gaps. Let's not blame patients for the gaps.
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Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Sat Aug 30, 2003 1:54 am Post subject: Blame Game
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I don't think any patients should have blame for not having home hemo programs. They can't create them. Nor can all of them educate themselves to the benefits. Without a computer I would never have been able to research home hemo, slow nocturnal or daily dialysis. Your post states a blanket statement that it is only for those who have good circumstances. They must have an adequate home, finances and support. The problem I have with this statement is that it doesn't quantify to what extent this is needed. In terms of adequate home, space is required. Finances it depends on the program your in and the center. In Lin's case she was expected to financially maintain the DI tanks.<
>In our program no one has to pay for any equipment required to do the treatments at home. Our water bill went up significantly but that was about it. However, if we couldn't afford this the Askys would be an alternative as the run times are a lot shorter therefore alot less water. We also have the expense of an extra phone line and long distance calls. However if we couldn't afford this we could take the option of home hemo as you don't need a phone line for the computer to monitor your machine so your existing phone is all you need. Support depending on the type of personality you have depeds on what degree you need support. There is no question or arguement that support is a big, big lus. However the degree of support required depends on the patient. Should something happen that I had renal failure tomorrow there is no doubt in my mind, I would be on home hemo in some form with or without support unless I was mentally or physically uncapable. I have always been a very independent person and being forced into dependency would surely kill me faster than the disease itself.<
>The requirements for home hemo need to be individualized. In our program the patients are evaluated by their circumstances. Some of us clean are own RO's. Others are cleaned by center personnel. If by chance the computer system goes down some patients are told they can do their treatment if they want to without the tech monitoring the machine. Others are told to skip the treatment.<
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>I think Lin summed it up well. When she posted this is about patients having a choice. No one is trying to say it's for everyone; it isn't. But those who do fit the criteria should have the opportunity.<
>It's no more fair forcing me to be an in-center patient because of lack of programs than it would be to force in-center patients into home hemo for lack of centers.<
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>The only patients who I feel hold any responsiblity are those who want home hemo but won't speak out for themselves. I believe if they put the pressure on; it may move centers into starting programs Knowing they have the support of patients for these programs.
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My opinion
Joined: 22 Jan 2003
Posts: 6
Posted: Sat Aug 30, 2003 1:35 pm Post subject: If it were I or a family member slow nocturnal would be it
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If it were myself or someone I cared for and I had an opportunity, I would chose slow nocturnal or at least home hemo. It is whether or not it was feasible for me or available.If I were in a clinic, I would not allow reuse to be used on me..<
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>I am was
really impressed with a machine that was offered out of Catalina California. It has been used in the military and catastrophic incidences. I have tried recently to get ahold of them, but they may of been forced out of business. They stated that some of the industry had wanted to buy them out to keep the machine off the market. I was going to validate this for our article and so far can not reach them.They would of been another option and choice. But cannot reach them so far.<
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>It would be nice if I could see the Akyss machine/ I live only hours away from Seattle. So far it hasnt become available for me to view or ask questions. So I can not be objective in it. I have heard good and bad..but havent had any response to information on it,nor a chance to view it. So that is why personally I have been silent on it.<
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>The fact of using patients to market and lobby is fine, if you know who the investors are and who owns the stock. I would like to see more grants given by the government, as choices should happen. If a patient is dumped it would be nice to have them offer a machine to help out, as the government is the payor in other machines. THat is a question I have. Why doesnt this become available instead of a death sentence.<
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>It appears that the government will pay for your machines and water system. I would choose a high-flux machine as I am familiar with them and do it myself at night. If I was able. But until I can see the Akyss and see how it works, I am going to pass until I am educated on it.<
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>Home hemo should be a choice, and every patient to be educated as with reuse on both sides of the coin, not just what the industry wants you to know. There is a middle and you need to be able to make an educated choice. Clinics should not be allowed to "jiffy lube" and you should have rights and choices.<
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>Arlene<
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Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Sun Aug 31, 2003 6:56 am Post subject: Good Question
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Arlene,<
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>Your question was a good one.
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ridgerunner
Joined: 11 Jan 2003
Posts: 101
Posted: Sun Aug 31, 2003 11:31 am Post subject: self care and home hemo
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i have seen the akysis machine as far as am concerned it is a machine that falls short of being simple. in the begining converted maytag washing machine were used. we have some very simple machine on the market as far as i am concern it is to have good support in maintance. if you do someting wrong they will stop and tell you what you did wrong and what to do to correct it. the answer is going to be self care in the clinic because the majority of dialysis will have no support. our attitude in this country that it is the gov,t place to take care of dad and or grand pa or grandma. the children and in most cases spouses will leave anyone that becomes sick or disable and come around when they think they can con them out of money. so self care in the clinic is the answer. the oersonnel in the clinic are going to have to wake up and realize every thing they can get the patient to do will save them time there for letting them serve more patients in a more nice setting every one would be more happy. the patients and the clinics are going to have to understand there is no more money, the gravey train is going to stop.
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Not everyone is intereste
Joined: 01 Sep 2003
Posts: 1
Posted: Mon Sep 01, 2003 3:41 am Post subject: treatment options
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The patients that post here are the exception not the rule. Recently we held a meeting for all of our local patients that included a RN from the home department to discuss PD and home hemo. We invited more than 200 patients. We also offered to meet individually with patients and family members who could not attend the meeting but were interested in the treatment options. Only two patients came. Each were interested, and have moved on to, PD. I find that patients are most interested in 1) getting put on and taken off in a timely manner, 2) who will cannulate their access, 3) who they are seated next to (and who will share the tv), and 4) are they allowed to eat in the unit. Very few patients are interested in doing ANYTHING for themselves. I wish more patients were interested in their care like all of you. Not all dialysis staff want their patients to sit back and let us run the show. It would be wonderful to have patients involved in their own care. Most patients want the "juffy lube" style dialysis. I think most caregivers would agree. Look around your units. Do you really see patients wanting or trying to get involved?
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Unfortunately
Joined: 01 Sep 2003
Posts: 1
Posted: Mon Sep 01, 2003 7:44 am Post subject: No Responsibility
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Unfortunately, I can believe your post as there only a small number of patients at present interested in home hemo and from what I hear PD is declining. However, there should be programs for the patients who wish to do home hemo so they can have a life structured by themselves not around the schedule of a center. Centers in our area do not have shifts that accommodate any patient that wishes to continue working. Hrs. are 6 to 6 that's it. It's bad enough knowing you will be on dialysis but to have to give up your income with it is devastating.
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Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Mon Sep 01, 2003 8:38 am Post subject: home dialysis
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It is easy for patients to be uninterested when there are very few role models of home hemo dialysis. I don't know if the patients here are exceptions to the rule or just "lucky" enough to be where they could get into a program. I would imagine if you have been conditioned to be in-center for any length of time a change would be difficult. And with someone telling you, your labs are good the question becomes why bother? The major reason dad switched to slow nocturnal was because I saw that even with his "good labs" he was fatigued, sick, and dimented. He wanted to be home and I seached and found slow nocturnal was his best chance. Best thing that ever happened, He just turned 79 and has been putting up drywall all week long in his work shop. Patients need to know the more treatments they get the better they feel and right now home hemo dialysis is the only answer to that. Pd is an option also and many patients like that; I have no experience therefore can't comment.<
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To not everyone is intere
Joined: 01 Sep 2003
Posts: 1
Posted: Mon Sep 01, 2003 8:39 am Post subject: home hemo
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That's because you aren't approaching patients in the right way. I know what you mean about the majority of patients, but you have to
ing it down to their level by using a number of means to open their eyes. Once that is done and home hemo is made accessable to them, they'll jump right onboard.
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Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Tue Sep 02, 2003 12:03 am Post subject: Approaching Patients
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I agree with the above poster. I don't believe patients are given the information on home hemo that would encourage them to even try it. I have read many, many myths on this board and others regarding home hemo. I think those myths are out there as they are the opinions of patients who haven't done it and heard rumors. Or from staff that draw conclusions without using all the facts.
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Bill Peckham
Joined: 06 Jan 2003
Posts: 65
Posted: Tue Sep 02, 2003 6:11 am Post subject: Arlene, come by any
time
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Arlene, you can stop by any time you're up in Seattle to check out an Aksys in use. I dialyze four days on one day off these days, in the evenings, so just let me know.<
>Bill
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am
Joined: 02 Sep 2003
Posts: 1
Posted: Tue Sep 02, 2003 1:28 pm Post subject: Thanks
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Your on Bill....I would love to see the machine and to meet you....Arlene
