I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: MooseMom on October 03, 2011, 12:47:55 PM
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I know it is possible for people to do NxStage alone; several people on IHD do/have done. I've been thinking about this for some time now, and I really do not want to have to get my husband involved in all of this. I'd so much rather just do it by myself. I don't want him to train with me, I don't want him to have anything to do with my dialysis at all, ever. So far I've been able to keep him out of it, and after seven years of this pre-dialysis crap, the most I've asked of him is to give me a ride to some of my more physically gruelling tests and to give me a ride into Chicago for my pre-transplant stuff. So, is there any way at all that I can convince my clinic, when the time comes, to train just me? I don't want a "caregiver". I don't want to be beholden to anyone; I just want to be left alone to get on with it, but I'm not sure the clinic will let me. Any ideas/thoughts? Thanks.
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I get where you are coming from, MM. I was exactly the same. If it were transplant, I would say just ignore their orders to bring a support person along - that's what I always did - but this is quite different.
Two things spring instantly to mind: 1. Are you up for this fight? Read Anna's story (Meinuk), it sounds like it took a load of energy, and since you are married and your husband is right there, it could come off as you just being contrary for the sake of contrariness. (I have had that one leveled at me and it is not flattering to hear.) 2. How does your husband feel about this? Look, it sounds bonkers on the surface, but there are people who actually want to be involved. Not knowing a thing about your husband, I cannot say what my suspicions are with him. Gwyn, more often than not, wants to be involved in these things. No, I did not take him to evals, nor did I end up letting him inject me with Aranesp, though my nephrologist wanted to teach him how. (Gwyn and I can have a volatile relationship - it probably would not have been a great idea to get us both in a room and then arm only one of us. :laugh:) However, I think I let him in on enough of the process that he at least knew most of the things that were going on with my health. He was an angel through the viral meningitis, cutting through red tape like a madman, phoning the physician-only line to demand to talk to people. It's amazing how people can rise (or fall) to a situation.
NxStage is a major commitment and I think being shut out of something that huge, and as you've said yourself, life-altering, would be poison to a marriage. Think of how you would want to be treated if your roles were reversed. I can think of at least one time where Gwyn was going through some major trauma and we had to go to Wales. He and his brothers spent the whole week talking in Welsh, when it came down to big moments, Gwyn would want his brother at his side, not me. I had to make up reasons to leave the room (carried a lot of coffee that week) because I just felt so unwanted and unwelcome. It was very early in our marriage, and so bizarre that it took years for me to get over the idea that he would look to his brothers in a crisis and not even speak a mutually intelligible language to me. I am about as squeamish as they come, but I would be insulted if Gwyn needed dialysis and did not even want me to attend the education that would make me feel reasonably competent to handle a crisis in the unlikely event that it happened. I am not sure I would stick around for that scenario, but every marriage is so very different, so perhaps this is exactly what would work for you and yours.
Good luck whatever you decide.
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I've been having tests and appointments on a regular basis for 7 years now, and I have been very vocal about how unnerving all of this has been, yet my husband has never volunteered to accompany me, nor have I expected him to. He works long hours at a very demanding job, plus he teaches one or two nights a week. So, he gets on with what he has to do in life and I do what I have to do. His coping mechanism is mainly one of denial; if he doesn't have to think about a problem, then it doesn't exist. This is not a criticism of my husband; he would tell you the same. I, obviously, am very different. If our roles were reversed, I would react very differently from how my husband would react because we are fundamentally wired so differently, so asking myself what would happen if he were in my shoes is largely irrelevant.
My husband says he will do whatever I need him to do, but again, this is a man who probably doesn't really understand the ramifications of ESRD because he doesn't want to know. Forcing him to train with me will mean that he will no longer be able to deny how things are. It's not a matter of being contrary or wanting to shut him out, rather, it is a matter of even greater selfishness; it is a matter of me not wanting to have to think about him and how he is coping because I can assure you he will will be completely and totally unprepared for the onslaught that is dialysis.
My husband's boss is a mercurial person, and I do not trust him to allow my husband to leave work on time so that he can train with me/help me once I come home with NxStage. I don't think I should be manipulated into a position where I cannot get the best treatment just because my husband's boss is in a bad mood and decides to keep everyone late at the office. This has happened before, and I am not going to let it happen again. The easiest way to protect myself is to do NxStage alone. It's a matter of self-preservation, really.
Frankly, I think my husband would be relieved to be spared from my dialysis. I think most men would, frankly.
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OK, nevermind. I just had another discussion with him about this, and he has said that in a weird way, he will welcome the opportunity to help me out. I can understand this because he must feel very helpless and frustrated that he's been unable to help.
I just needed some reassurance. I've been feeling very anxious lately.
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Here's my 2 cents worth. Get him to be designated your partner (different than caregiver, words do matter) for Nxstage, do the training and then let him get back to being as uninvolved as possible in the day-to-day operation of things. He'll know more about what you do and what's necessary but you can be in charge and stay as independent as possible.
You know, i'm really looking forward to being able to chat in person in Vegas...only 2 days away...I'm a lousy typist. :cuddle;
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I agree with this 110%. I met with the staff on Friday at the clinic to which I will be transferring to do my NxStage training. They asked if I had a partner at home. I told them that my husband will be coming to training ONLY to learn what to do in case of emergencies. I will be in charge of all other aspects of my training and subsequent runs at home.
This actually made the clinic staff happy. They indicated that in most situations, they want the patient to be in charge and the care partner is only there for emergencies and the like.
My husband is very squeamish when it comes to needles so if I asked him to stick me, he'd faint anyhow. :rofl;
Here's my 2 cents worth. Get him to be designated your partner (different than caregiver, words do matter) for Nxstage, do the training and then let him get back to being as uninvolved as possible in the day-to-day operation of things. He'll know more about what you do and what's necessary but you can be in charge and stay as independent as possible.
You know, i'm really looking forward to being able to chat in person in Vegas...only 2 days away...I'm a lousy typist. :cuddle;
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Hey MM,
As you may recall I'm going through NxStage training currently (with my wife). Yeah, there is a lot for the 'caregiver' and patient to learn and do, no question about it. IMHO the caregiver better have some motivation to do it, because there will be plenty of opportunities/frustrations with the learning curve to say 'to heck with this'. Probably not a situation to drag a potential caregiver 'kicking and screaming' into training with you, but that doesn't sound like what your dealing with.
Bill Peckham and others are doing NxStage solo, problem is getting into a situation where you can do it all by yourself. Like Monrein explained, get into the home program first (with a caregiver), then focus on reducing caregiver involvement.
---Dan
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Yes, I agree with all of you. Thanks for the advice!
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Here's my 2 cents worth. Get him to be designated your partner (different than caregiver, words do matter) for Nxstage, do the training and then let him get back to being as uninvolved as possible in the day-to-day operation of things. He'll know more about what you do and what's necessary but you can be in charge and stay as independent as possible.
You know, i'm really looking forward to being able to chat in person in Vegas...only 2 days away...I'm a lousy typist. :cuddle;
That's exactly what I did. My dad went through training with me, but never really was involved that much. He never really felt comfortable dialyzing me, and I always preferred to do it myself. I've been doing it solo for 4 1/2 years, including handling some serious emergencies myself.
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My then-husband was my partner. His requirements for the training sessions were pretty minimal. He came to two or three of them is all. It is good to have someone with some familiarity with system. It doesn't even have to be a big emergency for you to need help temporarily. (Think sprained wrist!) Having him willing to be there, but not really needed is the best option. I was not very successful at self-sticking - too much scar tissue around my graft. I tended to do the entire set up, including the inventory, the stacking and organizing deliveries, the reporting of stats, and making the dialysate. On dialysis days, I would call him in only to cannulate me and connect lines. Once that was done, he took off again, only returning to help with needle pulling at the end.
We used a small set of walkie talkies. They had a span of over half a block. He could be at the neighbor's house or down at the corner store and still be easily reachable in an emergency.
I also trained my mother-in-law. She never would try the needle sticking, but once that was done, she could handle the rest of what he did. It's nice to have a 3rd person - it keeps you from having to rely on 1 all the time.
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I hope I am not stepping on toes here, but I could not handle this disease without my husband. I guess because he knew I had kidney disease before we were married and I stared PD one month after we were married. If he can he goes with me to dr appointments, any kind of tests, and 11 surgeries in 8 months. He plans to go to my first two weeks of Nxstage training and then since he has Mondays off he will be there as well. Without him I would not feel comfortable doing Nxstage at home.
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OK, nevermind. I just had another discussion with him about this, and he has said that in a weird way, he will welcome the opportunity to help me out. I can understand this because he must feel very helpless and frustrated that he's been unable to help.
I just needed some reassurance. I've been feeling very anxious lately.
I get that too - I think in general you're better off taking full control of the day to day but I can see him thinking of this as an efficient way to get up to speed on this whole dialysis thing. I totally get that.
EDITED TO ADD: I just marked 10 years at home last month; nine years as a lone dialyzor.
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I was required to have a care partner ( on paper so to speak ) I took my 26 year old daughter.... she came in the first day and three days during the three weeks...she learned how to give me emergency saline if I needed it..other than that she sat there and watch me do everything..... I had to tell everyone that I did have a partner and that she would be there .... they were happy with that.... she does not live with me.... and when I went home I did every thing myself..... I had no problems.... at all I think I called Nxstage once.... and never called the clinic at all during the whole time I was On nxstage.... I received more support here like from Bill Peckham and a few other than anywhere else.... like resetting the alarms so then didn't go off in the middle of the night.... even when I was doing short daily I had no problems...
I did everything and my hubby doesn't know anything about the machine...he is often away on business anyway.... I don't even know what a care partner would do...
I would be prepared to train with someone and assign that title to a person...but I would do everything my self and I am sure that is what you will do anyway.... why pull people in to do half the job... I can understand why some others would want a care partner if one person can not do some of the things that are needed to be done...but for me I am one of those kind of people who likes to do it all by myself......LOL some say I am too in dependant...... stubborn or what ever.... Ok I am .... I have never brought anyone with me to any of the clinic visits..... sometimes they ask me where my care partner is today and I say I gave them the day off....LOL
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jbeany, I've thought about the walkie talkie idea, or a baby monitor. I'd like to eventually do nocturnal, but our bedroom really isn't conducive to that set up, but our basement is perfect. I'm thinking about replacing the couch with a single bed, and there's everything I need down there. Hubby can sit with me watching TV until he wants to go upstairs and go to bed. If I need something, I can yell into the baby monitor. :rofl;
esrd, no, you're not stepping on any toes. My husband has been with me through my various surgeries, but I guess I've gotten so used to attending the neph appts alone that I suspect he might get in my way. :rofl; He went with me when I was first given the news about how bad my kidneys were, and he asked all the wrong questions. He's a very smart man, but I can tell he would make a terrible patient. But I am thinking that he will adjust to NxStage; he has confidence in himself, so I will take his lead on that. I'm sure everything will be OK. It's just me getting into a bit of a tiswas.
Bill, good for you. You are the inspiration for so many of us here, and I'd like to take the opportunity right now to thank you.
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My wife went through the training from day one. I do the stick and she tapes me down. Then she's gone until it's time to pull the needles. She pulls although I have practiced pulling my own needles.
The best part about having my wife is that....(ok..those who are wickedly religious stop reading now).. at the clinic I couldn't have a topless nurse. At home I can :yahoo;
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I found out today from a d-center that I'm considering that they are funded for NxStage home hemo. She did say a partner is required (as if something goes wrong with in center dialysis, there is someone there to assist in resolving the problem) ....... at the same time, I *know* there are people on this board who say the DO do it alone.
So my question --- I think I can get a support person to train with me, but I do live alone and don't believe they'd be able to stay 6 days a week during my entire treatments. Here's the question for all of you who do this (partnered or not) .... Out of six weekly treatments, how often does an 'emergency' crop up that the individual on dialysis cannot handle.
I certainly don't want to do myself damage by trying to do this alone. Also - what are those 'emergencies specifically ??
Thanks for the information !!!
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The question isn't "how often".
The PROBLEM is if it happens once you can die very quickly.
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The question isn't "how often".
The PROBLEM is if it happens once you can die very quickly.
I have written about this so much that I am "almost" sick of writing it.
It is a question of informed consent. If a person is alone, and they want to do their own dialysis (and are able) they should be allowed to do it.
Alone I can drive a car, alone I can operate a chain saw, alone I can sail a boat, alone I can swim in the ocean, and alone I can walk the streets of Moscow. I know all of the risks involved. They are my choice. To deny someone the chance to have a better life because "it could be dangerous" well, that is simply wrong. Doing dialysis is assumed risk. I was ok with that, I did it for a year and I would do it again in a heartbeat - even if that heartbeat could be my last, it would be ME giving MYSELF the best possible care. Who else has MY best interest in mind? The staff that gave 9 people in my old unit Hep C? - oh yeah, they cared - just not enough to wash their hands or the chairs after treatment....
A care partner is an amazing thing, but if you don't have one, why should you be treated as if you can't take care of yourself if able?
Every person is individual. every case is unique. To make blanket statements to protect us from ourselves is condescending at best, and deadly at worst.
John, this is not directed at you - it is just the sentiment that set me off, and I get that you were just trying to be concerned, but we as people need to put on our big kids pants and take care of ourselves. Life is a risk. Let us decided if it is worth taking. To me the risk is well worth it.
We've had this discussion before: http://ihatedialysis.com/forum/index.php?topic=19406.msg349021#msg349021
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moose mom- you and your husband remind me so much of me and my husband!! My husband is also in denial about my situation. he thinks i'm moody and tired all the time now? he has no clue what things will be like once I start dialysis!! It wasn't until I made him accompany me to a nephrology appt that he realized that I have problems, I'm sick, and I need a transplant..soon.
i think he will help me if I ask, but like you, I really would like to do everything I can on my own. he is very squeamish. and if he realized the seriousness of dialysis, I think he may not handle it well.
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I second everything Anna said. Just one question:
Do my big boy pants make my butt look big?
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Do my big boy pants make my butt look big?
They're perfect. :kiss;
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The question isn't "how often".
The PROBLEM is if it happens once you can die very quickly.
John, this is not directed at you - it is just the sentiment that set me off, and I get that you were just trying to be concerned, but we as people need to put on our big kids pants and take care of ourselves. Life is a risk. Let us decided if it is worth taking. To me the risk is well worth it.
We've had this discussion before: http://ihatedialysis.com/forum/index.php?topic=19406.msg349021#msg349021
If someone dies during a treatment it reflects on the treatment. That's just a statistical fact that's part of the medical record community. How do I know? I worked in hospitals for 9 years and my wife has worked in medical records (Health Information Service) for 26 years. The chart will reflect that the patient died WHILE IN TREATMENT and that's all some republican senator needs to cut funding for the program. You CAN'T look at this as a personal thing. You MUST look at the whole picture to understand the ramifications.
But I know I won't change your myopic view of the topic. We'll just have to agree to disagree.
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Oh John, we will always disagree.
And as far as your experience and world views go, thank you for sharing. It is great that you have the internet to voice your opinion.
As for me, my world view and my "myopia", I am not too worried about my position in the food chain or my opinion being heard - it is out there and will be for as long as I can voice it.
In my myopic view, your fear is crippling you, your paternalistic attitude is archaic and until you open up your eyes and trust that people actually can take care of themselves with informed consent and assumed risk - your world will continue to become smaller and more regualted - slowly choking people off until everyone will be at the hands of for-profit technicians.
I am sorry that you feel that I and others like me are "unable" to take care of ourselves.
And these statistics that you quote? Let's be real, home dialysis is an outlier at BEST in the statistics of CMS deaths (that would be CMS Death form that you are trying to scare me into submission with - the deaths aren't tracked on a national basis via individual hospitals. CMS compiles its own data via the ESRD Program with a hat tip to DOPPS). Solo home dialysis will ALWAYS be an outlier to an outlier in any statistical report - doesn't our government have bigger fish to fry with our current mortality rate? I am thinking that you would HATE to be Australian, with their large population of people performing solo home hemodialysis and terrific overall survival rates.
I'm not worried about your fear of a few spoiling it for the rest. If someone is able to do solo home hemo dialysis, it should be available to them.
And as for my myopic view, I am working daily to make the provision of dialysis better for everyone - not just those that are lucky enough to have a care partner.
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Sooooooooooo ..........I was reading another thread and was struck with a thought (which generates additional questions .... SORRY)
For NxStage home hemo ..........is there any practicality in TWO dialysis patients doing their home hemo in the SAME location at the same time ?
My thought was - as a single person living alone, perhaps while I start in center (which I want to do for the initial support of starting this whole process) ..... I might meet up with someone else who lives alone and we can be each others partner and do our home hemo together.
I read online here that the NxStage is very portable and all, but I don't know what other types of hook ups, etc are needed and whether one location can support two people doing home hemo at the same time.
Also, from reading here it seems that home hemo is 6 days a week, 3 1/2 hours each treatment .... I'm not sure how much additional time the set up and breakdown take.
Soooooooooooo ............ 6 days a week, say 5 hours a day ................hmmmmm, it would have to be with someone you REALLY like ! Quite a commitment.
Thoughts ?? Is this a possibility for someone who lives alone to pursue. Would a center support two patients wanting to be each others 'partner' ??
Trying to 'think outside the box here' since I'm not yet as brave as Meinuk and the other solo home hemo users.
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Todd, this is a bit off topic, but I did hear about 2 sisters who were each others' NxStage partners.
Aleta
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I'm blissfully single and I do Home hemo on my own.
Nxstage training includes alot of troubleshooting w/alarms. It's up to your Dr to determine if you have the discipline, health and a brain to manage alone. Your trainer will also verify if you are capable to go it alone.
Other than on D, my health is excellent.
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I'm in the process of doing my home training and I do have an 'assistant". My nurse said 'we like to call them care partners' but even at this stage he is really there as an extra pair of hands as needed, and probably once we're past the training, to make sure that I don't goof up with something. I am strongly committed to being as independent as possible, already sel-cannulaing, already pulling my own needles but haven"t quite worked out how to reach everything. One thing that I am finding is that some things are quite fiddly and my manual dexterity ain't what it used to be as I think that I have some peripheral neuropathy either from 20+ years of ESRD or nerve damage from carpal tunnel syndrome. Things like this could be a bar to indepence for some. I'mglad that I have my husband to help, even if down the line I manage to get fully self-caring which is my ultimate goal. Everyone is different though and what works for one person, won't work for someone else. Nonetheless, I am firmly of the belief that everyone should be able to determine how they go about it themselves, and not have their lives determined for them by the medical/nursing profession. Hey, we're adults aren't we? I don't remember reverting to sucking a pacifier and wearing diapers just because my kidneys stopped working. :bow;
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I don't deny that I could do home hemo. And I salute those of you that do.
But I'm not a medical professional, nor do I strive to be one. I've been a diabetic for over 45 years now, and have been shooting myself since I was 9 years old.
I'm older now, and tired. Some days, I just want to stay in bed. I don't even change my own oil anymore, though I used to.
I'm not turning my (single) house into a dialysis center. I'm old, and cranky. They don't screw with me down at the center. They tried, and saw how I can bite. They're really nice to me now, and we get along fine. And when I leave there, I'm done with it. For at least two days.
I'm glad you guys can handle doing that at home. My two children weren't born at home, either. But I suppose they could have been :)
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You're nuts if you do it alone. All it takes is ONE mistake and you could be dead.
I say that as someone who flew on a MedEvac helicopter in the Army. Even with my experience you're absolutely nuts to do it alone.
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You're nuts if you do it alone. All it takes is ONE mistake and you could be dead.
I say that as someone who flew on a MedEvac helicopter in the Army. Even with my experience you're absolutely nuts to do it alone.
I guess I'm nuts, then. As amanda said, we don't revert to infancy just because we're on dialysis. We are rational, thinking adults and we have weighed the risks - which are ours to take. I'm well-trained and could do this in my sleep at this point. I will grant you, I feel better knowing I have my husband to help if I need him to, but even if I did not have him I'd still fight to do it myself.
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wow a helicopter. I guess I'll go back incenter tomorrow.
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wow a helicopter. I guess I'll go back incenter tomorrow.
:rofl; :rofl;
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wow a helicopter. I guess I'll go back incenter tomorrow.
A flight medic back in the late 70s. That means all I had was a drug bag and a defibrillator. I had no cell phone so I couldn't call a doctor. It was just me and the patient.
NO MedEvac crew can do shit without talking to a doctor today. I could do more than nurses can do today.
You're way out of your league on this one. Go ahead..be a child about it.
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JohnJ it wouldn't matter if you reported being a nephrologist who flew the space shutle, your assertion is deeply misguided.
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JohnJ it wouldn't matter if you reported being a nephrologist who flew the space shutle, your assertion is deeply misguided.
Bill, I love it :clap; :rofl;
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You're nuts if you do it alone. All it takes is ONE mistake and you could be dead.
Hey, I'm nuts too!
John, you and I have a history of not agreeing, but this is the first time that you have called me a name (in public- who know what you spit at your computer when you read my posts)
I've never done hemodialysis in a helicopter, but Bill, I would suggest that you add that to your list. You've taken your dialysis machine white water rafting, and on a Sea Cruise, too bad that there wouldn't be length or adequate power suppy in a helo to dialyize while checking out the Grand Canyon, but if anyone can find a way to do it, I am sure that you could!
And again, I stand by that a flight medic has a totally different view on healthcare. I would not want a flight medic administering my dialysis. Just like I would not want a Dialysis Tech tending to my gunshot wound.
John, you can be scared for yourself, and think that you would be nuts to take care of yourself. But as for me, and others who are able to and thrive while taking care of ourselves, you are simply insulting.
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No, I'm simply better trained and I have more experience than you.
Please tell me which company tells you that doing this alone is ok.
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JohnJ, no one is demanding that you do home hemo alone. If you want a care partner, have someone train you and then just get on with it. If other people prefer to dialyze at home on their own, armed with all kinds of alarms and access to phones and ER assistance, let THEM get on with it. If you are afraid of doing it alone, then don't do it. Not everyone shares your fears.
I doubt that any company will publically say that it's OK for fear of legal liability issues.
Let every person decide for themselves what they are comfortable with. I'm sure you have your own dialysis concerns without having to worry about what Bill or Meinuk are doing.
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Please tell me which company tells you that doing this alone is ok.
Well, that's easy: DaVita. I think they might know a teensy bit more about dialysis than a flight medic.
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I doubt that any company will publically say that it's OK for fear of legal liability issues.
My point is that this is not and SHOULD NOT be feared. Both Bill and I have been public. Me, the New York Times and a few other papers. Bill, pretty much anywhere you look.
I dialized alone at two DaVita units, Bill is with the Northwest Kidney Centers.
I think that both companies should be applauded in our cases (and all of the others that choose not to be as public as Bill & myself) while experienceing hugely different outcomes, I can safely say that they are both considered responsible in the Nephrology world. (well, ok, I'll say Northwest Kidney Centers... RE: DaVta... heh - respecting my rights and promoting my best possible treatment HAD been DaVita strong points)
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Well, that's easy: DaVita. I think they might know a teensy bit more about dialysis than a flight medic.
Sheesh, well I do know for a fact that Bill JUMPED out of an airplane. I think that there were a few flying lessons once upon a time too - but his flight medic experience may be limited to taping up scrapes from skydiving.
I'm not too sure about qualifications though.... Let me just go over and look at his CV (it's public, but I'm not gonna link to it)
Board Member, Trustee, Technical Expert Panels, Dialysis Outcomes, National Kidney Community Emergency Response blah blah blah but nope, no flight medic. It looks like in the past 22 years the only person he has stuck a needle in is himself.
Hmm, 20+ years of dialysis = HOW many needlestickes? It is a good thing that he made a video so he can remember the technique (of course that is how I (and hundreds of others) first saw how to self cannulate). http://www.billpeckham.com/from_the_sharp_end_of_the/2007/12/cannulation-vid.html
As for me. I'm just nuts.
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wow a helicopter. I guess I'll go back incenter tomorrow.
A flight medic back in the late 70s. That means all I had was a drug bag and a defibrillator. I had no cell phone so I couldn't call a doctor. It was just me and the patient.
NO MedEvac crew can do shit without talking to a doctor today. I could do more than nurses can do today.
You're way out of your league on this one. Go ahead..be a child about it.
John, I think I get it. I've been wondering why you are so patronizing and overbearing. Are you looking for recognition for your career? Do you feel margininalized? Are you that guy in the corner who is mumbling to himself "back in MY day..." as his bitterness eats away at his soul?
Or do you have a misplaced sense of control in where you feel the need to tell people what they should or shouldn't be doing? Does it make you feel that no one respects the sacrifices that you made in 'Nam? Or the heroics that you were a part of? Do you think that you are "saving" people by telling them they are nuts? We all die in the end John. I haven't figured out how to dodge that bullet. I can guarentee that anyone who is on dialysis ponders their own fragile walk. It is all about informed consent. I was informed of the risks entailed in solo home hemodialysis, and I gave my consent. I ask you to respect me and those who, like me who are working as a part of their care team and achieving the best possible dialysis no matter WHAT their living arrangements.
I can imagine you sitting at a computer screen and digging up the story about the blind English girl who was on solo home hemodialysis and she died. It has been discussed here on IHD at length. Imagine living in a world where you are allowed to perform solo home hemo dialysis when you are blind! I bet THAT has you spinning in your Barcalounger John.
John, it is 2012. I salute your service to our country and I applaud your advocating for the best possible dialysis you could recieve for yourself, but I condemn you for trying to dictate that I am unable to diayize myself.
Currently, there is a war going on. It is a war against ESRD. We are ALL in the trenches. (not everyone is lucky enough to make Air Corps) NO ONE is saying that you are going to be forced to do dialysis alone. NO ONE is painting a rosey picture of solo-home hemodialysis. Your overreaction is quite spectacular. You call us "nuts". I call us survivors. I share my story because it was a learning experience for me, just as EPOMAN shared his story. Solo home hemodialysis is happening whether you agree with it or not. I simply want it out in the open. There are plenty of people who have lied and worked their way around the system. I am just happy that I could tell the truth and share my story.
I work full time advocating for dialysis patient rights in a world where our rights are stripped away at every level. It is a bad situation when one of our brothers in arms starts blindly (and John, you are being blind in making assumptions about people's experiences and/or qualifications) attacking their stance.
The humanitarian in me wants to take pity on you and just say "he is allowed his opinion no matter how heavy handed he is in presenting it".
But the redhead in my wants to skewer and debunk your every word.
Today, I am a redhead. And a nut!
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I doubt that any company will publically say that it's OK for fear of legal liability issues.
My point is that this is not and SHOULD NOT be feared. Both Bill and I have been public. Me, the New York Times and a few other papers. Bill, pretty much anywhere you look.
I dialized alone at two DaVita units, Bill is with the Northwest Kidney Centers.
I think that both companies should be applauded in our cases (and all of the others that choose not to be as public as Bill & myself) while experienceing hugely different outcomes, I can safely say that they are both considered responsible in the Nephrology world. (well, ok, I'll say Northwest Kidney Centers... RE: DaVta... heh - respecting my rights and promoting my best possible treatment HAD been DaVita strong points)
I'm really, really glad to read this! So, :clap; :clap;
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John, I do not dialyse on my own, I have my husband to help me. Not everyone is in this position , and I have the utmost respect for people like Bill and Meinuk. I have been doing NxStage since October and bit by bit am getting more autonomous with my care. Why do I want to do this? Because like you I am a control freak, but the diference is I want to control my life, not foist my views on other people. The difference is, I fiercely defend independence and have, and will strive for independence. To that end, I have defended my right to sel-cannulate from the moment I decided to do NxStage, and it was an uphill battle, with extra fistula operations to get the fistula set up in a way that I would be able to do it. I pull my own needles and have already done several runs completely independently. Now I am working on my neph. to do nocturnal.
Sure, independent dialysis is not for everyone, for whatever reasons. I am just glad that there are nephrologists out there who have sufficient respects for their patients and their right to self-determination, that they are willing to support their patients decisions.
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I too, do my husband on NxStage. I will say at the start, I was a little apprehensive, but now, I see how he feels and I got to tell you, Iam proud of our accomplishments. My hubby and I really don't fear anything, but the wraph of God. We choose not to hide behind anything! That is so not living.
Now I am not a real educated person either, but I believe I learned this with some frustrations at first but like someone indicated above, I could probably do this blind folded.
The persons doing the training are very well qualified and they make sure before releasing anyone to home, that they are very comfortable in doing it. I thank God for them and I thank God for NxStage!
But if one chooses not to do it, then that is fine. No one forced me to do this and no one is forcing others to do whatever! I might be Coco for cocopuffs, but Im not nuts! Although, I have them for snacks sometimes!!!!
lmunchkin
:kickstart;
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JohnJ, no one is demanding that you do home hemo alone.
I never said anyone did. Stop trying to put words in my mouth.
If you want a care partner, have someone train you and then just get on with it.
I have a partner and we've been doing this for 3 years.
If other people prefer to dialyze at home on their own, armed with all kinds of alarms and access to phones and ER assistance, let THEM get on with it.
What does your clinic say about this?
If you are afraid of doing it alone, then don't do it. Not everyone shares your fears.
Afraid isn't the point. Knowing when something is a stupid risk is more like it.
I doubt that any company will publically say that it's OK for fear of legal liability issues.
You "doubt"? Have you checked? I have. And EVERY clinic I've talked to REQUIRED a partner for training AND for continued home hemodialysis. So one more time..what has YOUR clinic told you? Or are you simply playing dumb with them?
Let every person decide for themselves what they are comfortable with. I'm sure you have your own dialysis concerns without having to worry about what Bill or Meinuk are doing.
I stated my opinion. Or is that only allowed by a certain clique in here?
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I doubt that any company will publically say that it's OK for fear of legal liability issues.
You "doubt"? Have you checked? I have. And EVERY clinic I've talked to REQUIRED a partner for training AND for continued home hemodialysis. So one more time..what has YOUR clinic told you? Or are you simply playing dumb with them?
I see you didn't address my post, which was that MY DaVita clinic allows it on a case-by-case basis. I made a point of asking them. Obviously Meinuk's DaVita clinic does, too. And Bill's, and he's at the oldest dialysis facility in North America. Why did you ignore that?
If it were that dangerous having a partner would be a CMS rule and clinics would have no choice but to comply in order to be paid by Medicare. It is not.
In addition, they don't allow just any bubblehead to do home hemo. It requires intelligence, organization and the ability to think on your feet and solve any problems that do arise. Patients are evaluated before they are accepted into a program and not everyone is eligible. They do not release you to home until you prove your proficiency. My husband only had to come in twice during five weeks of training - and the second time was a wash - because my clinic knew I would train HIM myself, which I did. Why are you questioning the judgement of professionals in the field?
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Please tell me which company tells you that doing this alone is ok.
Well, that's easy: DaVita. I think they might know a teensy bit more about dialysis than a flight medic.
I'm sure they know more than you do. Tell you what. Why don't you call Sherry Soaper, who is the Home Hemo consultant at DaVita headquarters and ask her what the OFFICIAL DaVita policy is on doing dialysis at home WITH A PARTNER PRESENT. And the ask her why....and the "legal" aspect of this won't even come up unless you ask her.
Once you get off the phone with her get back to us.
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Please tell me which company tells you that doing this alone is ok.
[quote author=Desert Dancer link=topic=24615.msg416413#msg416413 date=1329415878
Well, that's easy: DaVita. I think they might know a teensy bit more about dialysis than a flight medic.
[/quote]
I'm sure they know more than you do. Tell you what. Why don't you call Sherry Soaper, who is the Home Hemo consultant at DaVita headquarters and ask her what the OFFICIAL DaVita policy is on doing dialysis at home WITH A PARTNER PRESENT. And the ask her why....and the "legal" aspect of this won't even come up unless you ask her.
Ah, a sure sign of a lost argument: first with the ad hominem attacks, and now you're moving the goalposts.
We were speaking of individual clinics, were we not? My clinic, Meinuk's clinic, Bill's clinic, MooseMom's clinic? You yourself mentioned all the individual clinics you've questioned. And now you want to discuss headquarters and official policy? Please focus and try to stick to the discussion at hand.
I'm sorry you're ruled by fear, and sorrier that you think everyone else should be ruled by your fear, too. I'm outta here.
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I'm sure they know more than you do. Tell you what. Why don't you call Sherry Soaper, who is the Home Hemo consultant at DaVita headquarters and ask her what the OFFICIAL DaVita policy is on doing dialysis at home WITH A PARTNER PRESENT. And the ask her why....and the "legal" aspect of this won't even come up unless you ask her.
Ah, a sure sign of a lost argument: first with the ad hominem attacks, and now you're moving the goalposts.
HAHA Who mad the attack?
We were speaking of individual clinics, were we not? My clinic, Meinuk's clinic, Bill's clinic, MooseMom's clinic? You yourself mentioned all the individual clinics you've questioned. And now you want to discuss headquarters and official policy? Please focus and try to stick to the discussion at hand.
Nope..not moving the goalposts at all. SHE said DaVita FIRST, then she said her clinic. So I started by asking DaVita about their policy..which is to HAVE A PARTNER. Don't worry....this will get back to her clinic as it should.
I'm sorry you're ruled by fear, and sorrier that you think everyone else should be ruled by your fear, too. I'm outta here.
Nah...not ruled by fear at all. I'm more of a logic and common sense kinda of guy. And I DON'T lie to build myself up in a forum.
We'll find out exactly what the DaVita line is and then we'll find out what leeway the clinics have. This is all good information for all of us to have. Nothing but the FACTS.
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JohnJ it wouldn't matter if you reported being a nephrologist who flew the space shutle, your assertion is deeply misguided.
Really? Would you care to tell us what clinic and which nurse ok'd you doing home hemo alone?
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SHE said DaVita FIRST, then she said her clinic. So I started by asking DaVita about their policy..which is to HAVE A PARTNER. Don't worry....this will get back to her clinic as it should.
??? ??? ??? ???
Meinuk is going to be reported to her dialysis clinic? That's a trick I'd like to see....
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Jesus, JohnJ, what's the matter with you? You have an attack for just about everyone, don't you? Please leave us alone, OK? You've got yourself sorted with your care partner and your three years of experience, so why are you so interested in what other people are doing? If we choose to make a horrible mistake and put our lives in danger by wanting to do home hemo alone, shut up and let us get on with it. I promise we won't hold you responsible for our fatal errors.
You're not worried about the effect of our mistakes on institutional statistics. You're just being combative for the sake of it. I seriously don't think you are in the least bit concerned for the well-being of Meinuk or Bill or any other human being, so please grant us permission to figure this out on our own.
Thank you.
Edited to add: JohnJ, it might be really interesting if you were to ask your home dialysis nurse about this. See, here's the problem (although I'm assuming you already know this...); the only place in the US for a patient to get optimal dialysis is at home. Clinics just do not offer frequent dialysis, and only a handful offer true nocturnal. So, that means that if you want to remain as healthy as possible on D, you have to treat yourself at home. Now, what happens to those people who are otherwise good candidates for home hemo yet do not have a care partner? Is it fair or even ethical to deny them the best treatment available simply because of their lack of a partner (assuming they would WANT to do home hemo?)? I'm sure most patients would like to have a partner, but not everyone is so lucky, and to compound their bad luck by refusing them access to optimal dialysis just doesn't seem right.
It just seems to me that with all the fancy, flashy communication devices we have at our disposal these days, communicating an emergency is easier than ever. Clinics should allow the well informed, well trained patient to assume whatever risk he/she desires. Otherwise you are letting corporate policy dictate your heath care choices, and I can't imagine you'd really want THAT.
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Ok, this is what you do to file a grievance about me.
John, you can call the ESRD network covering my state. (NY) and the department of health in my state (NY)
My name is Anna Bennett and I was a patient at Life Care dialysis in NYC under. The care of Dr. Walter wasser. You john j feel that in your professional opinion as a flight medic (ret) anna bennett is a nut, and should never have been allowed to self dialyize alone at home. (For evidence, you can give them the news paper article and training diary linked below)
Thanks john for your concern, and don't worry, medicare, the network and the department of health will be able to track me down. (I'm pretty easy to find)
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Jesus, JohnJ, what's the matter with you? You have an attack for just about everyone, don't you? Please leave us alone, OK? You've got yourself sorted with your care partner and your three years of experience, so why are you so interested in what other people are doing? If we choose to make a horrible mistake and put our lives in danger by wanting to do home hemo alone, shut up and let us get on with it. I promise we won't hold you responsible for our fatal errors.
You're not worried about the effect of our mistakes on institutional statistics. You're just being combative for the sake of it. I seriously don't think you are in the least bit concerned for the well-being of Meinuk or Bill or any other human being, so please grant us permission to figure this out on our own.
Thank you.
Nope..you're wrong. I'm not being combative..I'm simply trying to get the FACTS out here and not someone's conjecture. If it's ok with a clinic then fine. But if it's not it's not fair to that clinic for someone to be spreading lies in a forum like this. This place should be full of FACTS and not lies. I'm simply trying to get to the truth. Do you have a problem with the truth?
Edited to add: JohnJ, it might be really interesting if you were to ask your home dialysis nurse about this. See, here's the problem (although I'm assuming you already know this...); the only place in the US for a patient to get optimal dialysis is at home. Clinics just do not offer frequent dialysis, and only a handful offer true nocturnal. So, that means that if you want to remain as healthy as possible on D, you have to treat yourself at home.
Agreed. I was in clinic for 6 months and hated it and I wasn't healthy at all.
Now, what happens to those people who are otherwise good candidates for home hemo yet do not have a care partner? Is it fair or even ethical to deny them the best treatment available simply because of their lack of a partner (assuming they would WANT to do home hemo?)? I'm sure most patients would like to have a partner, but not everyone is so lucky, and to compound their bad luck by refusing them access to optimal dialysis just doesn't seem right.
Is if fair or ethical for someone to tell their clinic they have a helper when they don't? Is it fair for a patient to spread lies about a company (DaVita) or a clinic? Is it fair for someone to spread lies in a group that is here to help others? How will that clinic's nurse's feel if a patient dies ALONE at home?
It just seems to me that with all the fancy, flashy communication devices we have at our disposal these days, communicating an emergency is easier than ever. Clinics should allow the well informed, well trained patient to assume whatever risk he/she desires. Otherwise you are letting corporate policy dictate your heath care choices, and I can't imagine you'd really want THAT.
We ALL agreed to abide by our clinics when we signed on. Yes, it's right to allow a patient to accept risks WITHIN THE CONFINES of the agreement with the clinic. If the clinic say that under NO circumstances is it acceptable for a patient to dialyze on their own then THOSE ARE THE RULES and you have to live by them. Don't like it? Then change it.
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Ok, this is what you do to file a grievance about me.
Huh? Who said anything about filing a grievance? What the hell are you talking about?
John, you can call the ESRD network covering my state. (NY) and the department of health in my state (NY)
My name is Anna Bennett and I was a patient at Life Care dialysis in NYC under. The care of Dr. Walter wasser. You john j feel that in your professional opinion as a flight medic (ret) anna bennett is a nut, and should never have been allowed to self dialyize alone at home. (For evidence, you can give them the news paper article and training diary linked below)
Thanks john for your concern, and don't worry, medicare, the network and the department of health will be able to track me down. (I'm pretty easy to find)
All I asked was..does your clinic owner (DaVita) and nurse know that you dialyze by yourself. It is a simply question.
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Ok, this is what you do to file a grievance about me.
Huh? Who said anything about filing a grievance? What the hell are you talking about?
John, you can call the ESRD network covering my state. (NY) and the department of health in my state (NY)
My name is Anna Bennett and I was a patient at Life Care dialysis in NYC under. The care of Dr. Walter wasser. You john j feel that in your professional opinion as a flight medic (ret) anna bennett is a nut, and should never have been allowed to self dialyize alone at home. (For evidence, you can give them the news paper article and training diary linked below)
Thanks john for your concern, and don't worry, medicare, the network and the department of health will be able to track me down. (I'm pretty easy to find)
John, this is SUCH old news. Read my training diary. Yes, everyone knew that I was alone. It went national when life care closed and I ws transferred to a clic that said no. I dialyized without a cllinic for over a month and then had my choice of four in NY state that would support me alone. I went to a davita clinic ALONE and then had a successful transplant. Once upon a time it was pretty big news.
I just saw my trainig nurse last november. We're friends, and she knew I was alone. And I just saw my NP from my second davita clinic last week at the dog park. They both knew I was alone.
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Wow! I just got a PM from John saying that he understands why I don't have a partner. (I'll cut and paste it when I am at a computer)
You have just been sent a personal message by JohnJ on I Hate Dialysis Message
Board.
IMPORTANT: Remember, this is just a notification. Please do not reply to this
email.
The message they sent you was:
And I understand why you don't have a partner.
Reply to this Personal Message here:
[/size]
Phew, and I just thought it was because I'm fat. Sheesh...it is a good thing that this isn't a dating site!
(edited because I finally had the chance to cut and paste it)
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Wow! I just got a PM from John saying that he understands why I don't have a partner.
How very classy!
Phew, it is a good thing that this isn't a dating site!
And here I was holding out hope for an invitation to an IHD wedding....
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We had an IHD wedding! It was awesome, I cried. Sluff & Mrs Sluff in an elvis chapel the first vegas trip.
Cara, I'm more of a "live in sin" kinda gal...
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Wow! I just got a PM from John saying that he understands why I don't have a partner. (I'll cut and paste it when I am at a computer)
Phew, and I just thought it was because I'm fat. Sheesh...it is a good thing that this isn't a dating site!
AHHAH Who cares if you're fat? Sounds like you're projecting your personal problems onto others.
No..it has nothing to do with your weight.
From your posts I couldn't tell if you were still a patient or not.
But it was still interesting to hear from DaVita that company policy dictates that you have a partner. I would have been very surprised if they said otherwise.
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My signature line is pretty comprhensive John. If you can't tell if I am currently on dialyis or not you're not looking too closely @ my posts.
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He's a concern troll, y'all. May I suggest we ignore him? He can't keep the argument going himself and he's not worth the effort. Close-minded know-it-alls rarely are.
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He's a concern troll, y'all. May I suggest we ignore him?
I was thinking the same thing.
Cara, I'm more of a "live in sin" kinda gal...
Rule-breaker! Rule-breaker! I am so telling your clinic....
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My wife went through the training from day one. I do the stick and she tapes me down. Then she's gone until it's time to pull the needles. She pulls although I have practiced pulling my own needles.
Well, this is the kind of thing I'd like to ask you about. Does she help you set up the machine or break it down afterwards, or is needle pulling all she does? If that's all she does, that's great...that's about all I'd want anyone to help me with unless I was able to grow a couple of extra hands. Do you still practice pulling your own needles? Have you succeeded on doing it alone?
I'm sorry...I am not clear if you've been on D for 3 years or have been on NxStage for 3 years (to check, I'd have to look at your previous posts on this thread and thereby lose what I've already typed, and I'm to lazy to do that!). Let's say you've been doing NxStage for 3 years. This might be a silly question, but does your wife ever take any kind of refresher course for what to do in an emergency? If you were to have trouble tomorrow on your run and were unconscious, are you and she both pretty certain she'd remember what to do?
Have you ever been in situation where she has not been available for your run, ie, been sick or out of town or something? What do you do in those circumstances? Do you think you could dialyze alone for a day or two if you had to? Or would you have to go inclinic if your wife were indisposed?
Thanks for your replies!
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I'm not JohnJ, but I am in the same situation that he is in. I set up my machine and stick myself. My husband tapes down my needles then he's on his own devices while I do my treatment. Most times, he's within shouting distance but there are times he does go for a nap, at which time I have my phone next to me as does he.
As far as a refresher, I had to do a yearly refresher last month on emergency procedures, including what to do in case terrorists invade Casa de Cattlekid. :rofl; DH did not have to sign off on this refresher, although it's only been three months since we've been home.
If DH is not going to be home, we use that as our day off. This summer, he may be going on a vacation or two without me. If that's the case, then I have been told that I can come back to my training clinic for a day here or there with notice, where I would still be dialyzing with NxStage. I would never go back to a regular clinic if at all possible, I had to do a treatment last week with the old Fresenius machine and I don't miss that old washed out feeling at all. If worse comes to worse, I can have a friend come over and sit with me while I do my treatment. A good friend is an RN and said that she would help me out whenever she is needed.
My wife went through the training from day one. I do the stick and she tapes me down. Then she's gone until it's time to pull the needles. She pulls although I have practiced pulling my own needles.
Well, this is the kind of thing I'd like to ask you about. Does she help you set up the machine or break it down afterwards, or is needle pulling all she does? If that's all she does, that's great...that's about all I'd want anyone to help me with unless I was able to grow a couple of extra hands. Do you still practice pulling your own needles? Have you succeeded on doing it alone?
I'm sorry...I am not clear if you've been on D for 3 years or have been on NxStage for 3 years (to check, I'd have to look at your previous posts on this thread and thereby lose what I've already typed, and I'm to lazy to do that!). Let's say you've been doing NxStage for 3 years. This might be a silly question, but does your wife ever take any kind of refresher course for what to do in an emergency? If you were to have trouble tomorrow on your run and were unconscious, are you and she both pretty certain she'd remember what to do?
Have you ever been in situation where she has not been available for your run, ie, been sick or out of town or something? What do you do in those circumstances? Do you think you could dialyze alone for a day or two if you had to? Or would you have to go inclinic if your wife were indisposed?
Thanks for your replies!
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My signature line is pretty comprhensive John. If you can't tell if I am currently on dialyis or not you're not looking too closely @ my posts.
You're POSTS didn't say "WHEN" I was on dialysis.
No, I never read your signature line but I understand why you feel the need to add all that.
And no, I've never spat at the computer because of you. Again, you're projecting YOUR problems onto others.
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As far as a refresher, I had to do a yearly refresher last month on emergency procedures, including what to do in case terrorists invade Casa de Cattlekid. :rofl;
You know, I honestly don't know if you are kidding or not. LOL!
Anyway, thanks for that info. I don't have anyone who could take my husband's place for a day if necessary, so this is something I would have to consider.
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Fortunately or unfortunately, I am not kidding. In Illinois, I can see the info about tornadoes being useful. Terrorists, not so much. The nurse just gave me a bunch of stuff she printed off the FEMA website.
As far as a refresher, I had to do a yearly refresher last month on emergency procedures, including what to do in case terrorists invade Casa de Cattlekid. :rofl;
You know, I honestly don't know if you are kidding or not. LOL!
Anyway, thanks for that info. I don't have anyone who could take my husband's place for a day if necessary, so this is something I would have to consider.
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JohnJ it wouldn't matter if you reported being a nephrologist who flew the space shutle, your assertion is deeply misguided.
Really? Would you care to tell us what clinic and which nurse ok'd you doing home hemo alone?
oh no! You're not going to tell are you?
http://youtu.be/t6NN6M1bhNc
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I fixed the above link using a work computer.
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I am a real fan of Dr Agar over on Home Dialysis Central; he knows just about everything there is to know about dialysis, particularly home dialysis, and practicing in Australia, I thought surely he must have patients who dialyze alone....all of that Outback country over there, you know. So I asked him what they do in Australia for patients who want to dialyze at home, alone, and here is a link to that discussion...
http://forums.homedialysis.org/threads/3323-Doing-home-hemo-alone-in-the-US?p=22121
Geez, don't let him keep believing that Americans are weenies! LOL!
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I am a real fan of Dr Agar over on Home Dialysis Central; he knows just about everything there is to know about dialysis, particularly home dialysis, and practicing in Australia, I thought surely he must have patients who dialyze alone....all of that Outback country over there, you know. So I asked him what they do in Australia for patients who want to dialyze at home, alone, and here is a link to that discussion...
http://forums.homedialysis.org/threads/3323-Doing-home-hemo-alone-in-the-US?p=22121
Geez, don't let him keep believing that Americans are weenies! LOL!
This isn't Australia, is it?
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I am a real fan of Dr Agar over on Home Dialysis Central; he knows just about everything there is to know about dialysis, particularly home dialysis, and practicing in Australia, I thought surely he must have patients who dialyze alone....all of that Outback country over there, you know. So I asked him what they do in Australia for patients who want to dialyze at home, alone, and here is a link to that discussion...
http://forums.homedialysis.org/threads/3323-Doing-home-hemo-alone-in-the-US?p=22121
Geez, don't let him keep believing that Americans are weenies! LOL!
That man is nothing if not thorough in his responses!
He certainly has Americans pegged. (She says with a certain measure of despair....)
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This isn't Australia, is it?
What is the relevance of this comment? Your point when you started this was, that it is not safe for someone to dialyse at home, so are you saying that Australians are more capable of dialysing at home than people in the US? They don't bleed? What is the point that you are trying to make from this comment?
Don't you think that it is time to let this go? You have made your views abundently clear. Anyone coming to IHD seeking advice will be able to weigh your views against what others have said, and be able to make their own informed choice about how they want to dialyse.
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JohnJ, you are right...this isn't Australia. But I thought the information in Dr. Agar's post was still useful as the body of an Australian isn't that much different from than of an American. Dr. Agar has travelled the world, lecturing and attending conferences for many years, so he has a wealth of knowledge about different dialysis practices that shouldn't be ignored. He has given his opinion as to the cultural and societal differences between Australia and the US, and I'd be interested in your thoughts. Why do you think that there is so much more emphasis on patient independence in Oz than here? Remember that dialysis in this country is a for-profit industry while it is not in Australia...do you think that might have something to do with the US being something of a nanny state in this regard?
I'd still really like to know what you would do if your wife could not be your care partner for a few days. Would you attempt to dialyze alone, or would you have to go back into clinic? And, does your wife still feel pretty confident that she remembers what to do in an emergency? Thanks.
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I haven't read this whole conversation, but I think it's all about liability. My clinic has been harping on having a "care partner" since the very first mention of the even the very smallest possibility of me doing home hemo. I'm fortunate to have someone, but I still want to do as much as I can on my own. Because we make other people responsible for ourselves, we pay the price when we're not allowed to be resposible for ourselves! This is just another case of efficiency and one-size fits all medical care that's delivered by big business: because there are some people who will not be able to successfully do this on their own, we'll make everyone have a care partner. That way we're not responsible if something goes wrong.
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Fearless, would you do me a favor and, when/if convenient, ask your clinic what would happen if someone wanted to do home hemo but didn't have a "care partner"? Ask them if they think it is fair that someone who didn't have such a person should be doomed to less-than-optimal life-saving treatment just because they were widowed or divorced or alone for whatever reason. And ask them what happens if a care partner suddenly becomes indisposed. Is the patient supposed to then just submit themselves to crappy dialysis just because their partner might be sick or out of town?
And also, if you would, ask if they will teach you how to do a run by yourself, alone, as a precaution just in case your partner has an emergency.
I don't know why Americans have become so, well, blaming. We seem to have to always have someone else to blame instead of relying on ourselves to train adequately.
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MM,
When asked the initial questions about doing home hemo, one was: is your partner going to be helping you or are you going to be trying to do this mostly by yourself? i said I want to do as much as possible by myself. My partner apparently needs to be there in case there's an emergency. And, honestly, without knowing anything about the details yet, I WANT someone to be there. But I know that eventually I won't even need that assurance, mostly because I've already faced down death, and if the risk I'm taking is that something could happen that would kill me, well, I've decided it's worth it (that's how sick I am of in-center hemo)
But, what i also know at this point is that there is no one at my clinic who can answer those questions. Or, if they did, I already know the answers:
What would happen if no care partner? ans: no care partner, no home hemo
Is it fair that someone who didn't have such a person should be doomed to less-than-optimal dialysis? No, it's not fair, but it's the rules we must follow. -
What if a care partner becomes indisposed? I'll find that out I'm sure.
I think it's possible that there might be times I'll have to have the crappy dialysis again for one reason or another - but I can deal with that.
I think that because I said I want to do this as much s possible by myself they will instruct me that way.
And I will just say this to you, and you will interpret it as you will:
When you're doing home dialysis it's very important to document your compliance, attend all evaluations and submit to all examinations of your home, set-up, practices. Meet every requirement of the monthly and annual evaluations, and show good lab results (which we all want). But remember, at the end of the day, you're doing your dialysis unobserved and are, after all, responsible for how that happens, no matter how many people are "made" to be responsible by all the rules and regulations that are in place.
The rules and regulations are there to protect the corporations from liability, not necessarily to protect the patient from themselves. Otherwise, they would just have us sign something that says "if I accidentally kill myself, I don't hold...(plug in corporation)...responsible."
I'm not really worried that I won't be able to do my dialysis all by myself. My clinic just needs to know that there's going to be someone there so that they'll train me, give me my supplies, find me compliant every year, and legally meet their own requirements of accountability.
Do you understand what i'm saying?
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I don't think it is a fear of lawsuits so much as an ingrained paternalism and on a fundimental level it is taking an approach appropriate for treating acute disease and applying it to a chronic illness.
Any sort of risk analysis would reveal that people are safer lone dialyzing frequently at home vs. dialyzing conventionally incenter. Centers don't allow it because they have not thought it through, and unless something comes along that forces them to think it through it'll stay the same. The provision of dialysis will not change on its own. In general industry believes conventional incenter dialysis is an acceptable level of treatment thus there is no point in looking at an alternative(s).
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I don't think it is a fear of lawsuits so much as an ingrained paternalism and on a fundimental level it is taking an approach appropriate for treating acute disease and applying it to a chronic illness.
Any sort of risk analysis would reveal that people are safer lone dialyzing frequently at home vs. dialyzing conventionally incenter. Centers don't allow it because they have not thought it through, and unless something comes along that forces them to think it through it'll stay the same. The provision of dialysis will not change on its own. In general industry believes conventional incenter dialysis is an acceptable level of treatment thus there is no point in looking at an alternative(s).
There is no doubt that quite a few people do home dialysis without any assistance quite well and should be allowed to do so legally as in Canada and Australia and other nations. However, those nations do not have 25% of all of the lawyers in the world as American doctors face. We are an incredibly litigious society compared to many other nations. Practicing medicine in America by necessity means looking over your shoulder with every single patient and placing the proper documentation in the chart. That is just the simply reality of practicing medicine here in America.
For those of us that worked in large HMO's, company policy and practices overseen by our own teams of liability lawyers dictates many of the aspects we must undertake. One aspect is that of the compliance officers in a large organization, many of whom are lawyers by training who certify under Federal and state compliance with all rules and regulations or face very large corporate fines. This coupled with state laws and regulations requiring care partners is the largest motivator behind the individual mandates in home training programs to have a care partner. Most states have these laws and and only a handful don't require care partners for home dialysis.
Paternalism was no longer encouraged by the time I entered medical school in the mid 1980's. The age of informed consent and autonomy dominated the ethics classes and teachings. Paternalism was soundly dismissed as an ethical paradigm and in fact, informed consent is a medical-legal requirement based on the ethics of patient autonomy. I don't believe that this is the main motivator of requiring care partners. The fear of being sued is a very real component in daily medical decisions and any doctor in America that does not take this into account and not only practice defensively, but also provide documentation will inevitably run into problems since patients suffer adverse events even when no medical errors occur. It is just the nature of practicing medicine that patients do not always do well.
In the end analysis, the fact that most states prohibit by legal statute dialysis at home alone is the biggest impediment to increasing the number of patients who could benefit and who would be capable of performing self care at home. That is the real target in my opinion.
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I don't know what I find funnier: that docs need to be taught to be paternalistic or that docs no longer traffic in paternalism. Looking up the definition of paternalistic the only thing missing is a picture of a nephrologist.
I've discussed the NY reg http://www.billpeckham.com/from_the_sharp_end_of_the/2009/02/who-needs-to-approve-self-dialysis.html (http://www.billpeckham.com/from_the_sharp_end_of_the/2009/02/who-needs-to-approve-self-dialysis.html) Peter do you have any citations for any other state that has "laws and regulations requiring care partner"? I rather doubt it.
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I would like to advocate for lone home dialysis, but right now, as a patient, it's more important that I simply get out of the clinic. I feel fortunate that we have the equipment available to do that. Once I'm out on my own, if perchance I'm able to say: "you know what? I had to do this without assistance and look at my great success" I will pay witness to that as loudly as I may to advocate that we be "officially" allowed.
I have already fought a few battles with my clinic, and I have lost. When it comes to "policy" I don't have the power to make global changes, and, instead, am further ostracized. There are probably notes in my "file" that I'm neurotic or overly anxious, because the administrators have no idea how threatening i find some of their "policies" (even though those policies are in perfect keeping with all the laws and regulations and requirements of the industry.)
I'm beginning to understand that it's about my doc too. At the same time I transitioned from 8 yrs on PD to hemo, my doc retired. I found my new doctor (the only other one who could serve me in home hemo in this town and at my clinic) to be much less autonomous with regards to the corporation. I think the old guy wasn't afraid to relate directly to the patients and I think he got sick of being thwarted by "policy". With my new doc I feel like there's an ever-so-thin separation between us, which is the influence that the corporation has over him. I sincerely hope I'm wrong. But I feel like I'm more on my own than ever. Without the internet I would not know that the best dialysis is extended, slow dialysis. My clinic doesn't allow that, so: another battle looms. I'm seriously thinking about re-locating simply to access better care. That really sucks.
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I don't know what I find funnier: that docs need to be taught to be paternalistic or that docs no longer traffic in paternalism. Looking up the definition of paternalistic the only thing missing is a picture of a nephrologist.
I've discussed the NY reg http://www.billpeckham.com/from_the_sharp_end_of_the/2009/02/who-needs-to-approve-self-dialysis.html (http://www.billpeckham.com/from_the_sharp_end_of_the/2009/02/who-needs-to-approve-self-dialysis.html) Peter do you have any citations for any other state that has "laws and regulations requiring care partner"? I rather doubt it.
Actually with the Nephrology world, they have supplanted informed consent with another ethical paradigm called shared decision making. If you wish to call the decisions made by them under this new paradigm paternalism, fair enough, but it is really what the PRA has promoted for years: shared decision making. This is all the rage in academic medicine. WA state has a state delineating the two.
http://www.hemodoc.com/2011/04/the-slippery-slope-of-shared-decision-making.html?cid=6a0133f61818b7970b014e60575318970c
I believe that is one of the reasons that nephrology does such a terrible job of informed consent, they don't believe in this any longer.
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I don't know what I find funnier: that docs need to be taught to be paternalistic or that docs no longer traffic in paternalism. Looking up the definition of paternalistic the only thing missing is a picture of a nephrologist.
I've discussed the NY reg http://www.billpeckham.com/from_the_sharp_end_of_the/2009/02/who-needs-to-approve-self-dialysis.html (http://www.billpeckham.com/from_the_sharp_end_of_the/2009/02/who-needs-to-approve-self-dialysis.html) Peter do you have any citations for any other state that has "laws and regulations requiring care partner"? I rather doubt it.
Actually with the Nephrology world, they have supplanted informed consent with another ethical paradigm called shared decision making. If you wish to call the decisions made by them under this new paradigm paternalism, fair enough, but it is really what the PRA has promoted for years: shared decision making. This is all the rage in academic medicine. WA state has a state delineating the two.
http://www.hemodoc.com/2011/04/the-slippery-slope-of-shared-decision-making.html?cid=6a0133f61818b7970b014e60575318970c (http://www.hemodoc.com/2011/04/the-slippery-slope-of-shared-decision-making.html?cid=6a0133f61818b7970b014e60575318970c)
I believe that is one of the reasons that nephrology does such a terrible job of informed consent, they don't believe in this any longer.
I think it is an overreach to say that the RPA's guidance on the "Appropriate Initiation of and Withdrawal from Dialysis" has somehow changed the way the provision of dialysis is experienced in the US.
Paternalism is not an ethical framework so much as a behavioral choice, a policy or practice on the part of people in positions of authority (eg nephrologists, unit administrators) restricting the freedom and responsibilities of those subordinate to them (dialyzors) in the subordinates' supposed best interest. My point is that it is not in the dialyzor's best interests to restrict HHD access. It is perfectly clear to me that if a dialyzor wishes to lone dialyze and can demonstrate proficiency, then the provider and physician should support their decision.
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I don't know what I find funnier: that docs need to be taught to be paternalistic or that docs no longer traffic in paternalism. Looking up the definition of paternalistic the only thing missing is a picture of a nephrologist.
I've discussed the NY reg http://www.billpeckham.com/from_the_sharp_end_of_the/2009/02/who-needs-to-approve-self-dialysis.html (http://www.billpeckham.com/from_the_sharp_end_of_the/2009/02/who-needs-to-approve-self-dialysis.html) Peter do you have any citations for any other state that has "laws and regulations requiring care partner"? I rather doubt it.
Actually with the Nephrology world, they have supplanted informed consent with another ethical paradigm called shared decision making. If you wish to call the decisions made by them under this new paradigm paternalism, fair enough, but it is really what the PRA has promoted for years: shared decision making. This is all the rage in academic medicine. WA state has a state delineating the two.
http://www.hemodoc.com/2011/04/the-slippery-slope-of-shared-decision-making.html?cid=6a0133f61818b7970b014e60575318970c (http://www.hemodoc.com/2011/04/the-slippery-slope-of-shared-decision-making.html?cid=6a0133f61818b7970b014e60575318970c)
I believe that is one of the reasons that nephrology does such a terrible job of informed consent, they don't believe in this any longer.
I think it is an overreach to say that the RPA's guidance on the "Appropriate Initiation of and Withdrawal from Dialysis" has somehow changed the way the provision of dialysis is experienced in the US.
Paternalism is not an ethical framework so much as a behavioral choice, a policy or practice on the part of people in positions of authority (eg nephrologists, unit administrators) restricting the freedom and responsibilities of those subordinate to them (dialyzors) in the subordinates' supposed best interest. My point is that it is not in the dialyzor's best interests to restrict HHD access. It is perfectly clear to me that if a dialyzor wishes to lone dialyze and can demonstrate proficiency, then the provider and physician should support their decision.
Bill, as in most issues with dialysis, I don't believe we are in any disagreement. What ever folks wish to call the lack of informed consent, Paternalism or the latest ethical rage of shared decision making where they supplant informed consent with decisions made in part (perhaps in whole) by the medical team.
Unfortunately, in America, it is not only malpractice that a doctor has to be concerned but the medical license as well. The medical board in CA for instance is not what people think. The teeth of the medical board is the police officers that hold the power. Medical personnel are advisory only. Yes, that is what I said, police officers. It only takes one case to lose a license and end a physicians career. To say that doctors are paranoid is to fail to understand the fishbowl we operate within. Three physicians in my group I knew of personally faced the Medical board and two of the three cases were truly beyond their influence. They were simply bad outcomes through no fault of their own. The other case was a restricted narcotic prescription without doing a physical exam. All three were publicly reprimanded.
The reality is that as long as the standard of care is to have a partner, the majority of doctors will not risk their own career to enhance a patient's access to care. I believe that goes beyond "shared decision making," or paternalism. That doesn't make it right, but that is the reality. If an adverse outcome occurs with a patient at home without a care partner, then the doctor will in all likelihood face legal consequences on top of medical board action. The number of doctors now prosecuted in the criminal courts is growing exponentially. We have a much different situation in America than Dr. Agar in Australia where they are still reasonable.
Bill, it is a very complex mix any longer for American doctors. There are many layers of compliance that they must jump through in the course of the day.
As you noted earlier, not every state has requirements but I am not sure where to find all of the provisions in each state. Certainly, looking at health care providers, it is easier to see their requirements but the state issue is one that should be explored more as well.
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fearless, I hear what you're saying, and I understand and agree with your intent.
I also understand that advocating for "lone home hemo" is not your battle to fight at this moment.
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I don't know what I find funnier: that docs need to be taught to be paternalistic or that docs no longer traffic in paternalism. Looking up the definition of paternalistic the only thing missing is a picture of a nephrologist.
I've discussed the NY reg http://www.billpeckham.com/from_the_sharp_end_of_the/2009/02/who-needs-to-approve-self-dialysis.html (http://www.billpeckham.com/from_the_sharp_end_of_the/2009/02/who-needs-to-approve-self-dialysis.html) Peter do you have any citations for any other state that has "laws and regulations requiring care partner"? I rather doubt it.
Actually with the Nephrology world, they have supplanted informed consent with another ethical paradigm called shared decision making. If you wish to call the decisions made by them under this new paradigm paternalism, fair enough, but it is really what the PRA has promoted for years: shared decision making. This is all the rage in academic medicine. WA state has a state delineating the two.
http://www.hemodoc.com/2011/04/the-slippery-slope-of-shared-decision-making.html?cid=6a0133f61818b7970b014e60575318970c (http://www.hemodoc.com/2011/04/the-slippery-slope-of-shared-decision-making.html?cid=6a0133f61818b7970b014e60575318970c)
I believe that is one of the reasons that nephrology does such a terrible job of informed consent, they don't believe in this any longer.
I think it is an overreach to say that the RPA's guidance on the "Appropriate Initiation of and Withdrawal from Dialysis" has somehow changed the way the provision of dialysis is experienced in the US.
Paternalism is not an ethical framework so much as a behavioral choice, a policy or practice on the part of people in positions of authority (eg nephrologists, unit administrators) restricting the freedom and responsibilities of those subordinate to them (dialyzors) in the subordinates' supposed best interest. My point is that it is not in the dialyzor's best interests to restrict HHD access. It is perfectly clear to me that if a dialyzor wishes to lone dialyze and can demonstrate proficiency, then the provider and physician should support their decision.
Bill, as in most issues with dialysis, I don't believe we are in any disagreement. What ever folks wish to call the lack of informed consent, Paternalism or the latest ethical rage of shared decision making where they supplant informed consent with decisions made in part (perhaps in whole) by the medical team.
Unfortunately, in America, it is not only malpractice that a doctor has to be concerned but the medical license as well. The medical board in CA for instance is not what people think. The teeth of the medical board is the police officers that hold the power. Medical personnel are advisory only. Yes, that is what I said, police officers. It only takes one case to lose a license and end a physicians career. To say that doctors are paranoid is to fail to understand the fishbowl we operate within. Three physicians in my group I knew of personally faced the Medical board and two of the three cases were truly beyond their influence. They were simply bad outcomes through no fault of their own. The other case was a restricted narcotic prescription without doing a physical exam. All three were publicly reprimanded.
The reality is that as long as the standard of care is to have a partner, the majority of doctors will not risk their own career to enhance a patient's access to care. I believe that goes beyond "shared decision making," or paternalism. That doesn't make it right, but that is the reality. If an adverse outcome occurs with a patient at home without a care partner, then the doctor will in all likelihood face legal consequences on top of medical board action. The number of doctors now prosecuted in the criminal courts is growing exponentially. We have a much different situation in America than Dr. Agar in Australia where they are still reasonable.
Bill, it is a very complex mix any longer for American doctors. There are many layers of compliance that they must jump through in the course of the day.
As you noted earlier, not every state has requirements but I am not sure where to find all of the provisions in each state. Certainly, looking at health care providers, it is easier to see their requirements but the state issue is one that should be explored more as well.
NxStage made a decision to include the requirement for a care partner in their 510K, to this day NxStage claims that the care partner requirement was something the FDA mandated - I heard this directly from NxStage's CEO - but I've also heard from FDA sources that they have no such mandate, never had and still don't. So there is a discrepancy in how it came about but one thing is certain: NxStage's 510K does not set HHD's standard of care in the US. The 510K only determines how the device may be marketed, it has no say in the practice of medicine.
To me these concerns about novel lawsuits are just another smokescreen. No one can prove a negative so it would be a fools errand for me to try but considering the conservatism that NKC evinces in all things it is not credible that their support of lone dialyzors was/is taken lightly.
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The reality is that as long as the standard of care is to have a partner, the majority of doctors will not risk their own career to enhance a patient's access to care. I believe that goes beyond "shared decision making," or paternalism. That doesn't make it right, but that is the reality. If an adverse outcome occurs with a patient at home without a care partner, then the doctor will in all likelihood face legal consequences on top of medical board action. The number of doctors now prosecuted in the criminal courts is growing exponentially. We have a much different situation in America than Dr. Agar in Australia where they are still reasonable.
Hemodoc, you have so often decried the lack of "personal responsibility" in our society today, and this pretty much proves your point. Perhaps we have lost the knack for being personally responsible because we are no longer given any responsibility at all. If something goes wrong, we sue, we litigate and we blame. I wouldn't want to get my nephrologist in trouble, but to be frank, getting optimal dialysis irrespective of my partnership status is more important to me than my doctor's career. If it were a choice between being able to dialyze at home without a care partner OR having to dialyze in clinic because to do otherwise might put my neph's career on the line, guess which one I'd choose? But gee, I won't have that choice, will I? God forbid that my life should be of any consequence.
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The reality is that as long as the standard of care is to have a partner, the majority of doctors will not risk their own career to enhance a patient's access to care. I believe that goes beyond "shared decision making," or paternalism. That doesn't make it right, but that is the reality. If an adverse outcome occurs with a patient at home without a care partner, then the doctor will in all likelihood face legal consequences on top of medical board action. The number of doctors now prosecuted in the criminal courts is growing exponentially. We have a much different situation in America than Dr. Agar in Australia where they are still reasonable.
Hemodoc, you have so often decried the lack of "personal responsibility" in our society today, and this pretty much proves your point. Perhaps we have lost the knack for being personally responsible because we are no longer given any responsibility at all. If something goes wrong, we sue, we litigate and we blame. I wouldn't want to get my nephrologist in trouble, but to be frank, getting optimal dialysis irrespective of my partnership status is more important to me than my doctor's career. If it were a choice between being able to dialyze at home without a care partner OR having to dialyze in clinic because to do otherwise might put my neph's career on the line, guess which one I'd choose? But gee, I won't have that choice, will I? God forbid that my life should be of any consequence.
Dear Moosemom, you misunderstand my point. I have not discussed my personal choice that of course, if for some reason I didn't have a care partner, I would obviously choose to dialyze at home alone as long as I am able.
The doctors involved would need the backing of his health care administrators to do such or be a solo practictioner which is becoming few and far between. My doctor in Spokane is having to choose which ACO he will be a part of or risk losing his patients who will go to someone else. Doctos have made this choice, but if called to task, they could easily be in trouble. It all depends on the local standard of care. Seattle may be much different than other areas in the nation where home dialysis is considered a threat to the business of some dialysis directors. In that case, the local standard of care would crucify the doctor.
These are all barriers to the prescription of lone dialysis that must be first of all understood and second of all over come before the experiement that Bill has undertaken with NKC is accepted across America. There are no issues in Canada or Australia.
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I don't know what I find funnier: that docs need to be taught to be paternalistic or that docs no longer traffic in paternalism. Looking up the definition of paternalistic the only thing missing is a picture of a nephrologist.
I've discussed the NY reg http://www.billpeckham.com/from_the_sharp_end_of_the/2009/02/who-needs-to-approve-self-dialysis.html (http://www.billpeckham.com/from_the_sharp_end_of_the/2009/02/who-needs-to-approve-self-dialysis.html) Peter do you have any citations for any other state that has "laws and regulations requiring care partner"? I rather doubt it.
Actually with the Nephrology world, they have supplanted informed consent with another ethical paradigm called shared decision making. If you wish to call the decisions made by them under this new paradigm paternalism, fair enough, but it is really what the PRA has promoted for years: shared decision making. This is all the rage in academic medicine. WA state has a state delineating the two.
http://www.hemodoc.com/2011/04/the-slippery-slope-of-shared-decision-making.html?cid=6a0133f61818b7970b014e60575318970c (http://www.hemodoc.com/2011/04/the-slippery-slope-of-shared-decision-making.html?cid=6a0133f61818b7970b014e60575318970c)
I believe that is one of the reasons that nephrology does such a terrible job of informed consent, they don't believe in this any longer.
I think it is an overreach to say that the RPA's guidance on the "Appropriate Initiation of and Withdrawal from Dialysis" has somehow changed the way the provision of dialysis is experienced in the US.
Paternalism is not an ethical framework so much as a behavioral choice, a policy or practice on the part of people in positions of authority (eg nephrologists, unit administrators) restricting the freedom and responsibilities of those subordinate to them (dialyzors) in the subordinates' supposed best interest. My point is that it is not in the dialyzor's best interests to restrict HHD access. It is perfectly clear to me that if a dialyzor wishes to lone dialyze and can demonstrate proficiency, then the provider and physician should support their decision.
Bill, as in most issues with dialysis, I don't believe we are in any disagreement. What ever folks wish to call the lack of informed consent, Paternalism or the latest ethical rage of shared decision making where they supplant informed consent with decisions made in part (perhaps in whole) by the medical team.
Unfortunately, in America, it is not only malpractice that a doctor has to be concerned but the medical license as well. The medical board in CA for instance is not what people think. The teeth of the medical board is the police officers that hold the power. Medical personnel are advisory only. Yes, that is what I said, police officers. It only takes one case to lose a license and end a physicians career. To say that doctors are paranoid is to fail to understand the fishbowl we operate within. Three physicians in my group I knew of personally faced the Medical board and two of the three cases were truly beyond their influence. They were simply bad outcomes through no fault of their own. The other case was a restricted narcotic prescription without doing a physical exam. All three were publicly reprimanded.
The reality is that as long as the standard of care is to have a partner, the majority of doctors will not risk their own career to enhance a patient's access to care. I believe that goes beyond "shared decision making," or paternalism. That doesn't make it right, but that is the reality. If an adverse outcome occurs with a patient at home without a care partner, then the doctor will in all likelihood face legal consequences on top of medical board action. The number of doctors now prosecuted in the criminal courts is growing exponentially. We have a much different situation in America than Dr. Agar in Australia where they are still reasonable.
Bill, it is a very complex mix any longer for American doctors. There are many layers of compliance that they must jump through in the course of the day.
As you noted earlier, not every state has requirements but I am not sure where to find all of the provisions in each state. Certainly, looking at health care providers, it is easier to see their requirements but the state issue is one that should be explored more as well.
NxStage made a decision to include the requirement for a care partner in their 510K, to this day NxStage claims that the care partner requirement was something the FDA mandated - I heard this directly from NxStage's CEO - but I've also heard from FDA sources that they have no such mandate, never had and still don't. So there is a discrepancy in how it came about but one thing is certain: NxStage's 510K does not set HHD's standard of care in the US. The 510K only determines how the device may be marketed, it has no say in the practice of medicine.
To me these concerns about novel lawsuits are just another smokescreen. No one can prove a negative so it would be a fools errand for me to try but considering the conservatism that NKC evinces in all things it is not credible that their support of lone dialyzors was/is taken lightly.
Bill, as you have stated many times over, your zip code will determine your dialysis care more than anything else. NKC has always been a step ahead of everyone else for years.
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I wonder if aperson without a partner could legally challenge the situatiion that this is a discriinatory practice, particularly as thereis increasing evidence that outcomes are worse with in-unit 3x/week dialysis. I suspect that the majority of patients would not be able to afford the cost of doing so.
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Hemodoc, thanks for the explanation. You're right...I didn't entirely understand your point.
Amanda, you know, I've often ranted the same question to my husband who happens to be a lawyer, and as such, I've developed a bad habit of looking at these kinds of things from a different perspective. It occurred to me, like it has to you, that it might be considered discriminatory for a doctor to force a patient to have inferior treatment because of no other reason than their living arrangements. If the quality of dialysis received in clinic was equal to that received from home hemo, then there would be no case. But I think there is enough evidence that shows that more frequent dialysis is actually safer, and if the only place to get that safer dialysis is at home, then it begs the discrimination question. Or at least it does in my little brain...
It just doesn't seem to be fundamentally ethical to force patients into sub-optimal treatment because they have no home partner.
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It really is not necessary.... I did home dialysis for almost two years and did nocturnal for a year.... I never had a care partner nor was anyone in the house...... if there was someone it was because they were visiting..... I had no problems do everything my self..... Everything..... I never felt scared.....not once....... I was more scared going to in center the first three months that I did dialysis than at home....... Ok but In order for me to do home dialysis I had to train with a care partner.... I believe that person came in a total of 5 times..... she was trained on what to do if a emergency happened..... And it was a understanding that I did have a care partner... or my insurance and clinic would not let me do home dialysis......ok It was more important to me to do home hemo than to not....and a care person was understood and never talked about...... I hope someday that we can get past this care partner thing.....there are many of us that can and do take good care of ourselves... While others do need or want to have someone assist them with the home dialysis I believe that if its needed than great.... its just not that hard to do dialysis at home...... I know a couple of people who could but they dont want to bother with it...they would rather go incenter and not have to deal with any of it...... to each their own...... but I dont agree that not having a care partner could stop someone from doing home hemo.... its not right........ ok there my three cents worth.........
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As the market for home hemodialysis expands, this very small group today will likewise gain political power since it seems that the home dialyzors, especially those on home hemodialysis are the most vocal dialysis patients. We are now over 5000 and counting. NxStage alone has over 5000 patients in the US. I haven't seen the figures for the FMC Baby K.
There will be many in the future who have the care partner already who one day will be faced with dialyzing alone. Since there is no medical reason that a stable home patient cannot dialyze alone, I believe it will come to pass as the standard of care. The argument that dialyzing at home is dangerous is spurious considering how dangerous a dialysis unit is to people not only in terms of hospitalizations and complications but death as well.
The more we are, the more they will listen to us and our needs. Perhaps one day, we will have all units as patient friendly as NKC. We can only hope.
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My point is, that as far as I know NO US clinic allows solo home hemo for what ever reasons they have documented.
ANYONE in here who is advocating breaking the trust between doctor and patient does so at their own risk HOWEVER to advise others to do the same is asinine AND DANGEROUS. There are people who haven't even started dialysis yet reading these posts and you're telling them to ignore the training guidelines you received? Do you really think that' s a good idea?
Unitl sole home hemo is TAUGHT in the US then we shouldn't be advocating doing it. Whether you agree or disagree with the restrictions is a moot point. The POINT is we should he trying to help each other THE RIGHT WAY, not the wrong way.
Oh..and if you want to do home hemo alone...then move to Australia OR...get involved at the local and state level and get the restictions changed.
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I believe that person came in a total of 5 times..... she was trained on what to do if a emergency happened..... And it was a understanding that I did have a care partner... or my insurance and clinic would not let me do home dialysis
So you completely ignored the restrictions placed on you. They are there for a reason..the doctors and nurses know more about this than you do.
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I'd still really like to know what you would do if your wife could not be your care partner for a few days. Would you attempt to dialyze alone, or would you have to go back into clinic? And, does your wife still feel pretty confident that she remembers what to do in an emergency? Thanks.
My daughter is trained to be with me too.
Yes, I would go back to the clinic as I did when I traveled recently. I traveled alone for a few days so I simply went to a local clinic. It was easy to set up and no problems what so ever as I built that time into my schedule. Everyone understood that my medical needs had to come first.
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Any sort of risk analysis would reveal that people are safer lone dialyzing frequently at home vs. dialyzing conventionally incenter. Centers don't allow it because they have not thought it through, and unless something comes along that forces them to think it through it'll stay the same. The provision of dialysis will not change on its own. In general industry believes conventional incenter dialysis is an acceptable level of treatment thus there is no point in looking at an alternative(s).
Please cite where this risk analysis was done.
Or are you just making that up?
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In the end analysis, the fact that most states prohibit by legal statute dialysis at home alone is the biggest impediment to increasing the number of patients who could benefit and who would be capable of performing self care at home. That is the real target in my opinion.
Thank you Dr Laird for repeating that is is ILLEGAL to do it alone. As Dr Agar pointed out the reason is simply...lawyers. But the fact is that we agreed to abide by the terms set by our clinics and until the law changes we can't simply ignore them. If to many have problems caused by no one at home with you the entire home hemo program could be halted. Then what?
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At this point I should say that I have practiced all parts of my treatment by myself. That includes getting on AND off the machine. I do that just in case something happens to my wife (or daughter) while I'm dialyzing...I want to know that I can take care of myself. I do this once a month. All my wife does (or my daughter) is tape the needles down...they can do that much better than I can. And they pull the needles..again..they have two hands and better control of the needle.
If I were to dialyze by myself simply because my wife couldn't be there...and I died...what happens to my wife? She would blame herself for the rest of her life. Is that fair. What about the legal responsibilities of the clinic and staff. Can I just going to ignore the trust the have put in me? Can you?
Again, thank you Dr Laird for stepping in. At least the childish rants and insults have stopped. The fact that I was right from the beginning seems to have slipped their minds. Oh well...that's the way it goes.
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I trained ALONE at a Davita Clinic. Everyone was on board with me being alone, it was out in the open. The only time that I ever had anyone with me during dialysis was when a reporter and photographer come to interview me and take pictures for a story that was set up by the PR department of either NxStage or DaVita (I cannot remember which. At the time, DaVita was a large shareholder in NxStage).
When my clinic was closed, and I had to search for clinics that would take me, I had my pick of four clinics. I chose a DaVita clinic for convenience.
It is all here on IHD. Just as EPOMAN chose to share his story, I chose to share mine. In doing so, I HOPE that people will advocate for themselves, and be able to get the best possible dialysis that they can, no matter what their living situation.
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Cite the law that makes lone dialysis illegal, provide the link.
Can you really not work out the risk of 3x week dialysis vs. 5+/week? How many times has your wife/daughter saved your life during treatment?
The Northwest Kidney Centers' HHD Department's phone number is 206-292-2558 ask them.
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John, despite what Bill and Meinuk have repeatedly said, you still coninue to imply that they are acting against their dialysis units in doing solo dialysis. Since their units are in support of them doing dialysis without a partner, why on Earth would they move to Australia?
I know who my respect lies with and it ain't with you. Your wife must sure be a good and steadfast person and the patience of a saint.
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JohnJ....... looks like to me you need to have help..... you said that your wife tapes the needles down and does a much better job than you could...... you also need help pulling needles..... and that is ok too..... I however did all my taping and did a great job..... I also pulled my own needles with no problems and I only used one hand......just a little trick on how to do ..... no risk at all..... LIke I said in my post....some people feel better having help and some people need help with some aspects of home dialysis....some people have better manual dexterity than others..... Not a big deal.... If I have someone like a care partner with me while I am setting up and getting hook up they still would not be doing anything..... no point in just having them tear tape or something..... My clinic and my doctor knew very well that I was doing this all on my own..... I have even help others to learn to pull their own needles and look at other ways to tape down so they can safely sleep and feel safe about every thing.... There are clinics out there they make people believe that their care partner should never even leave the room.....not even for a bathroom break...... so many clinic's have so many different rules....some let you eat while others dont even want you to take a nap..... It really does depend on your own comfort level and your own ability..... I am not putting people down who have help with home dialysis..... I think its wonderfull that they have the help but I would like see more people who are in center be able to do home hemo and I feel that often clinics dont encourage people to go home..... They often make it sound like it very hard to do and it will take two people full time jobs to do dialysis at home..... No I dont know as much as many.... I learned alot from IHD , Bill Peckham, Peter, along with many others ... I do encourage Independence in all aspects of life.....
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I trained ALONE at a Davita Clinic. Everyone was on board with me being alone, it was out in the open.
Meinuk, he is not interested in FACTS. He is not interested in PROOF. All he knows is that HE disagrees with it, therefore you and Bill must be sneaky liars who've kept your clinics in the dark. He's not followed one link provided. He's not watched one video provided. Hell, you even gave him your doctor's name so he could 'tell on you'; I wonder if he's called and had his ass handed to him. Somehow I doubt it.
All his fearful and authoritarian self is interested in is being RIGHT. Anything that contradicts his dearly held beliefs will be met with fingers in the ears, 'neener-neener-neener-I-can't-hear-you' and non-sequiturs about Australia. Thankfully I think his attitude and his lack of interest in facts is going to be more than readily apparent to anyone reading this thread in the future.
Please, please don't feed the trolls.
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Hello all, after reading this extensive post I realized no one has mention "Virtual Partnering". The center I go to allows me to do dialysis alone while a tech monitors my machine through the internet. I have been doing nocturnal home hemo dialysis this way for almost six months now with no problems and the center has been doing it this way for a decade. I have only heard of my center who does the "Virtual Partner", but there has to be others throughout the U.S.
Anyone here heard of something similar?
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Hi, SugarBear. I remember another IHD member mentioning the nocturnal monitoring. It seems like they were in the NorthEast somewhere.
On another topic, could you please go to introductions and post a regular intro?
:welcomesign;
Aleta
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In the end analysis, the fact that most states prohibit by legal statute dialysis at home alone is the biggest impediment to increasing the number of patients who could benefit and who would be capable of performing self care at home. That is the real target in my opinion.
Thank you Dr Laird for repeating that is is ILLEGAL to do it alone. As Dr Agar pointed out the reason is simply...lawyers. But the fact is that we agreed to abide by the terms set by our clinics and until the law changes we can't simply ignore them. If to many have problems caused by no one at home with you the entire home hemo program could be halted. Then what?
John, I believe you are misunderstanding my point. I don't believe it is inherantly dangerous for patients in Canada and Australia to do dialysis at home and somehow in America it is dangerous. We have a much different society where people sue at the drop of the hat. Doctors here live in a fishbowl.
Nevertheless, any prohibition against a qualified patient capable of self care SHOULD by all means be allowed to go home and do self care alone. We have far too many examples of patients doing well. I know several personally. While I am thankful for my wife who does assist in certain chores, the majority of the treatment is mine. In fact, I am going to obtain a one hand tourniquette so that the entire start process is in my own hands. The only thing she does now is place the tourniquette since it requires two hands. Thankfully, they have one handed models that I am going to try soon.
I am a real gusher when the needles come out so that will be the biggest challenge I have doing the last portion, but I stick my needles and pull them myself. I don't consider this an obstacle difficult to overcome, just something at this point that my wife doesn't want me messing up her floors or God forbid, her ceilings.
In the end, any laws that prohibit single self care should be overturned. Any healthcare organization that prohibits single self care should be encouraged to change that opinion. The issue is one of stable dialysis patients vs the usual unstable in-center patients due to a number of factors not the least of which is high ultrafiltration rates. Self care at home is appropriate and it is an area we need to collectively move forward in securing.
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Haemodoc, I have the tourniquet with the 'buckle' to loop it around and then it secures to itself with velcro. I could only buy them in a large quantity, so if you want me to send you one, just pm me.
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Hi, SugarBear. I remember another IHD member mentioning the nocturnal monitoring. It seems like they were in the NorthEast somewhere.
On another topic, could you please go to introductions and post a regular intro?
:welcomesign;
Aleta
Yes ma'am :)
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Amanda, and MooseMom,
I never thought about the discriminatory aspect of prohibiting lone dialysis. I can imagine some poor soul, with no close family, no spouse to help. On top of that life, ESRD, and now being restricted to in-clnic dialysis as a "punishment" for living alone.
Yeah, there's yer lawsuit! How unfair.
You know what I'm really sick of? Weeny docs who are simply not on their patient's side. But I guess i have to forgive. i know with the number of patients my doc is responsible for, I sincerely doubt he has time for advocating with regard to the rules that need to be changed. Living in fear just like the rest of us who are dependent on the corporation for our survival.
I just wish more docs had the confidence to simply follow their conscience and always prescribe what's best for the patient, and not worry about the consequences (isn't righteousness defensible?)
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I added a post on this issue to my blog. It is an issue that other nations don't even debate. That discrepancy needs to be addressed.
http://www.hemodoc.com/2012/02/dialyzing-at-home-alone.html
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Outstanding blog entry, Hemodoc, as usual!
Sugarbear, I have heard of "virtual partnering" but don't really know much about it. I was thrilled to read in your intro about how you do nocturnal home hemo alone. I LOVED reading your story.
Fearless, yeah, weenie doctors who place their anxieties above their patients' well-being. But maybe people like you and SugarBear and Desert Dancer and Bill Peckham can gradually change their thinking.
As for lone dialyzing being illegal, what, is there dialysis police? Is this a misdemeanor? A felony? Can you be fined or imprisoned? How do they know you are engaging is this illegal activity? I've spent all day in bed with a stonking great cold, and I've been having lots of weird dreams about either Downton Abbey or the Dialysis Police. It's been a very strange day. :P
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Outstanding blog entry, Hemodoc, as usual!
Sugarbear, I have heard of "virtual partnering" but don't really know much about it. I was thrilled to read in your intro about how you do nocturnal home hemo alone. I LOVED reading your story.
Fearless, yeah, weenie doctors who place their anxieties above their patients' well-being. But maybe people like you and SugarBear and Desert Dancer and Bill Peckham can gradually change their thinking.
As for lone dialyzing being illegal, what, is there dialysis police? Is this a misdemeanor? A felony? Can you be fined or imprisoned? How do they know you are engaging is this illegal activity? I've spent all day in bed with a stonking great cold, and I've been having lots of weird dreams about either Downton Abbey or the Dialysis Police. It's been a very strange day. :P
I would highly recommend you stay away from the Walking Dead until this passes. LOL
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Hemodoc,
EXCELLENT blog post!
I'm going to give the address to my doc!
:thx;
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When I first started Dialysis and trying to work with my insurance company to do home dilaysis esp nocturnal.... I was told by my insurance company that no one in the US does nocturnal..... period... with the exception of one clinic in my town here that does allow nocturnal with a baby K and that would be hooked up to a monitoring computer system where people ( I suppose nurses ) would monitor me thru out the night....requirements were that I still needed to do blood pressure every 1/2 hour and I had to be on the machine ready to do dialysis every night by 10pm and off at 6am. NO exceptions.... I did not want to have to follow that time frame so I continured on short daily..... I think the monitoring system is another good way for people to get more dialysis at home and feel safe..... I just didnt like that I would have to do it on their schedule....... But I like that there were options..... Now my insurance company is allowing some people to do nocturnal but its still very limited..... its like a secret club.......LOL
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I've been having lots of weird dreams about either Downton Abbey or the Dialysis Police. It's been a very strange day. :P
MM, I laughed so hard over this...I'm having Downton Abbey withdrawal..... HELP!!!! :rofl;
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When I first started Dialysis and trying to work with my insurance company to do home dilaysis esp nocturnal.... I was told by my insurance company that no one in the US does nocturnal..... period... with the exception of one clinic in my town here that does allow nocturnal with a baby K and that would be hooked up to a monitoring computer system where people ( I suppose nurses ) would monitor me thru out the night....requirements were that I still needed to do blood pressure every 1/2 hour and I had to be on the machine ready to do dialysis every night by 10pm and off at 6am. NO exceptions.... I did not want to have to follow that time frame so I continured on short daily..... I think the monitoring system is another good way for people to get more dialysis at home and feel safe..... I just didnt like that I would have to do it on their schedule....... But I like that there were options..... Now my insurance company is allowing some people to do nocturnal but its still very limited..... its like a secret club.......LOL
Dear Tyefly, I am still considering selling the house in CA and getting a place near Portland to keep my Kaiser. That allows us to be close to Idaho as well that we have grown to truly enjoy but they don't have Kaiser there.
You will have to give me all of the information on who's who at Kaiser in Portland. Send me a PM when you have a chance. Nocturnal is slowly coming to Kaiser, but slow is the operative word. They keep waiting for the holy grail medical studies by RCT to justify utilizing this. Kaiser in S. CA has a nocturnal in-center program but only 4 patients to date. My nephrologist wishes to put people on the home nocturnal program but is hung up over the FDA approval of NxStage for nocturnal. Quite silly since NO dialysis machine has a nocturnal indication. The number of people killed by lack of access to these modalities because of red tape is stifling.
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Peter...... I will Pm you with the info..... My Neph who is a Kaiser Doctor and also the Medical director for the clinic that I went thru to do home hemo...and pave the way for Nocturnal.....The clinic is now a Davita but is still working with everything that we doing before they took over DSI.... The clinic it self has a nocturnal in center program which just started a few months ago with 20 available stations....but I think they are only half filled.... My doctor and I worked very hard with Kaiser and the clinic to get the home nocturnal started .....and I am pleased to say they are continuing..... I believe you would do well to go thru this clinic.... I will send you a PM on everything....
I too have house in Vancouver, Wa so I can continue with Kaiser..... my other house at the beach south of Lincoln city is where I truly live....but we must keep residency in the Kaiser zip codes...... and live there at least 6 months of the year.....OK Idaho is very nice esp up north where you are interested..... Plenty of good fishing up that way as well.... and of course lots of big trees..... you dont get that down in southern Ca....but hey sunshine is a premium.....LOL
I want to personally thank you for all the hard work you do providing so much information to all of us here and on your blog.....
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Peter...... I will Pm you with the info..... My Neph who is a Kaiser Doctor and also the Medical director for the clinic that I went thru to do home hemo...and pave the way for Nocturnal.....The clinic is now a Davita but is still working with everything that we doing before they took over DSI.... The clinic it self has a nocturnal in center program which just started a few months ago with 20 available stations....but I think they are only half filled.... My doctor and I worked very hard with Kaiser and the clinic to get the home nocturnal started .....and I am pleased to say they are continuing..... I believe you would do well to go thru this clinic.... I will send you a PM on everything....
I too have house in Vancouver, Wa so I can continue with Kaiser..... my other house at the beach south of Lincoln city is where I truly live....but we must keep residency in the Kaiser zip codes...... and live there at least 6 months of the year.....OK Idaho is very nice esp up north where you are interested..... Plenty of good fishing up that way as well.... and of course lots of big trees..... you dont get that down in southern Ca....but hey sunshine is a premium.....LOL
I want to personally thank you for all the hard work you do providing so much information to all of us here and on your blog.....
Thanks Tyefly, we are planning on getting down to Portland at least once this summer to look around and see which areas we are interested in renting. Hopefully, I will be able to transfer all of my Kaiser coverage up to the Portland area and then use that as my home base like you do as well. The old medical director from Southern CA just retired here and is now the head of the medical group in Portland and apparently has big plans for Kaiser in that area from what I have heard. That will be good news for us if it comes to pass.
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I added a post on this issue to my blog. It is an issue that other nations don't even debate. That discrepancy needs to be addressed.
http://www.hemodoc.com/2012/02/dialyzing-at-home-alone.html
Great article, very informative and well written.
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Outstanding blog entry, Hemodoc, as usual!
Sugarbear, I have heard of "virtual partnering" but don't really know much about it. I was thrilled to read in your intro about how you do nocturnal home hemo alone. I LOVED reading your story.
Fearless, yeah, weenie doctors who place their anxieties above their patients' well-being. But maybe people like you and SugarBear and Desert Dancer and Bill Peckham can gradually change their thinking.
As for lone dialyzing being illegal, what, is there dialysis police? Is this a misdemeanor? A felony? Can you be fined or imprisoned? How do they know you are engaging is this illegal activity? I've spent all day in bed with a stonking great cold, and I've been having lots of weird dreams about either Downton Abbey or the Dialysis Police. It's been a very strange day. :P
I would highly recommend you stay away from the Walking Dead until this passes. LOL
Good idea. Who knows what kind of dialysis nightmare THAT would induce!
Are you going to the conference in San Antonio? If so, are you going to blog from there?
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Outstanding blog entry, Hemodoc, as usual!
Sugarbear, I have heard of "virtual partnering" but don't really know much about it. I was thrilled to read in your intro about how you do nocturnal home hemo alone. I LOVED reading your story.
Fearless, yeah, weenie doctors who place their anxieties above their patients' well-being. But maybe people like you and SugarBear and Desert Dancer and Bill Peckham can gradually change their thinking.
As for lone dialyzing being illegal, what, is there dialysis police? Is this a misdemeanor? A felony? Can you be fined or imprisoned? How do they know you are engaging is this illegal activity? I've spent all day in bed with a stonking great cold, and I've been having lots of weird dreams about either Downton Abbey or the Dialysis Police. It's been a very strange day. :P
I would highly recommend you stay away from the Walking Dead until this passes. LOL
Good idea. Who knows what kind of dialysis nightmare THAT would induce!
Are you going to the conference in San Antonio? If so, are you going to blog from there?
No, I was invited to speak for one of the vendors, but I declined. Rich Berkowitz is going, not sure about Bill but Rich doesn't do live blogging. Doesn't look like Dr. Agar does live blogging as well. Will be a quiet ADC compared to years before without Bill's live blogging.
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Yeah, I just saw your post over at HDC.
I was looking at the conference website and saw all of the speakers lined up to talk about home hemo. I think it is a real shame that there won't be some sort of post-conference access to these speeches, or at least some distillation of the major points, for patients to look at.
I hope Bill will come on and let us know his plans. Maybe he will be blogging.
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Yeah, I just saw your post over at HDC.
I was looking at the conference website and saw all of the speakers lined up to talk about home hemo. I think it is a real shame that there won't be some sort of post-conference access to these speeches, or at least some distillation of the major points, for patients to look at.
I hope Bill will come on and let us know his plans. Maybe he will be blogging.
nope I'm staying home this year.
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nope I'm staying home this year.
Well, harumph. No tacos for you! (Mmmmmm....tacos!)