Home Dialysis Central

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  1. #1
    Join Date
    04-21-05
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    22

    Default Dangers of self-dialysis

    In reading some of the recent posts I gather that some folks are dialyzing at home alone. Both Aksys and NxStage say they are opposed to self-dialysis because of the possible dangerous situations which could arise. This belies the fact that many ESRD patients want to dialyze at home but don't have a partner or helper. It would be interesting to know whether Aksys and NxStage are assisting clinics in training patients for self-dialysis. If they are doing this, what do regulatory agencies require?

    Dialyzing at home is convenient and has health benefits, but it shouldn't be done alone. While at some point in the future self-dialysis may be safely performed, the current technologies require the presence of an assistant.

    Many problems can arise while dialyzing at home:

    -- A power outage, fire, plumbing problem, or other disaster could make it very dangerous for the patient to terminate treatment.

    -- The patient could fall asleep or pass out due to low blood pressure or other health problems. An assistant is needed to ensure prompt medical response and proper machine function.

    -- Reaching for machine controls or performing other tasks could cause bleeding from the cannulation site. An assisant who performs these tasks allows the patient to safely dialyze.

    -- In an emergency, the patient may have to perform a manual rinseback, which can be difficult or impossible to do alone. Similar problems may occur if the patient needs to interrupt treatment and perform blood recirculation.

    -- The patient with a fistula may have difficulty getting up from a chair after treatment since one arm may be immobilized due to clotting.

    -- Some patients require assistance performing maintenance as well as pre-treatment and post-treatment service on their hemo machines. These tasks may have to be performed while the patient is seated for dialysis.

    -- Machine malfunctions and alarms may require the help of another person in the room. The patient could cause infiltration or other problems with their cannulation sites if they try to perform recovery operations during dialysis.

    -- Blood draws, centrifuge operation, and refrigeration of blood-test tubes require the assistance of another individual if these tasks take place during dialysis.

    Once patients get hemo machines in their homes, they can do whatever they want with them. However, responsible clinics will not train patients in self-hemodialysis. Likewise, any prudent individual will refrain from engaging in a serious medical treatment without the assistance of another. For legal-liability reasons alone, Aksys and NxStage should do everything they can to discourage and prevent self-dialysis at home.

    What are your thoughts? Did your clinic train you to dialyze at home alone?

  2. #2
    Join Date
    06-25-04
    Location
    Kansas
    Posts
    1,739

    Default Patients dialyzing alone

    As far as I know, every machine manufacturer recommends that patients have a partner. This is because how the FDA approved the machines. None of the machine manufacturers -- Aksys, NxStage, B Braun, Fresenius, etc. recommend that patients dialyze at home alone. However, the decision about whether a patient can safely do dialysis at home should be one that occurs between the patient, the nephrologist, and the home training nurse.

    Machine manufacturers do not train patients. They provide manuals for operation of their machines that clinic staff who were trained by the companies that make the different machines use to train patients. For a clinic to train patients to do any kind of home dialysis, including home hemo, the clinic must obtain certification from Medicare. This requires that a Medicare surveyor visit the clinic to be sure that the clinic has the proper policies and procedures, has access to equipment and maintenance, has the appropriately educated and trained personnel, has training materials, etc. The clinic must assure that care for the home patient is comparable to care provided in-center dialysis.

    I feel strongly that unless it is impossible for one reason or another, the patient should always be trained to have primary responsibility for home dialysis. This requires that the patient feel competent and confident in his/her ability to handle the treatment and any situation that may arise. At the same time, the patient should know when, how, and who to call for help. Although some partners take on a more significant role, for many home hemo patients, their partner is merely an extra pair of hands when needed and someone to converse with during dialysis. The competent well-trained patient should be capable of setting up/tearing down the machine, doing his/her own needle sticks and securing the needles, making adjustments to the machine as needed, checking blood pressure and giving fluid as needed, recording vital signs during treatment, drawing blood (if done in the home), doing minor machine and water system (if needed) maintenance or calling for maintenance, etc.

    During home hemo training, the experienced home training nurse goes through the training manual with the patient (the same manual the patient takes home). The nurse teaches the patient how to do all aspects of dialysis. Included in training is how to troubleshoot emergencies that may happen. I've seen nurses while training patients create emergencies (unplugging a machine, turning off water, etc.) to make sure that patients can handle these problems before they were allowed to go home. Like patients who do dialysis in a clinic, all home patients should be trained how to do a "clamp and go" disconnect from hemodialysis in the case of fire or other disaster. In the case of a power or water outage, a patient would learn how to hand crank his/her blood back. Keep in mind that some of the newer machines have battery backups to allow patients to take themselves off dialysis in the case of a power outage. Water outage during dialysis is not a problem for the Aksys or NxStage and new machines make it faster and easier for patients to give themselves replacement fluid rather than wait on someone else to do it in the event of symptoms of low blood pressure.

    After a patient is home trained, Medicare mandates that clinics provide ongoing support to them. Before a patient is selected for home dialysis, his/her home is assessed to be sure that it will work for home hemodialysis. After training is completed, home training nurses and sometimes other personnel do a home visit when the patient does his/her first home treatment. I suspect most clinics do at least an annual home visit to be sure that the patient is doing dialysis as trained. The home dialysis patient has access to the nephrologist, nurse, dietitian, and social worker in-person during clinic visits and by phone as needed. Clinics require patients to provide logs of their treatments and some patients have been brought back in-center if they do not comply with this requirement. Seeing the documentation, the labs, and observing the patient in clinic should be good signs of whether the patient is doing his/her treatments as trained.

    Multiple research studies on the effects of daily treatments (short daily and long nocturnal dialysis) have shown that patients on daily treatments report fewer symptoms during and between dialysis treatments than patients on conventional 3 times a week dialysis who have up to 2 days off between treatments. In fact, patients almost never have low blood pressure, rarely have cramps, rarely have access problems with one person cannulating their access, generally tolerate dialysis better and report significant quality of life benefits with these treatments, including reduction in dietary restrictions, less thirst, itching, fatigue, depression and improvement in energy, sleep, sexual functining, mental clarity and overall well-being. They take fewer medicines, have fewer problems with their dialysis access, have better nutrition, need less EPO to control their anemia. Plus, they have improved cardiovascular health. As you can see, many of the problems that have traditionally required someone to be present during dialysis rarely happen on the daily therapies and if they do, patients are given the skills to handle them.

    In my opinion, it is cruel and inhumane treatment to require a patient to keep his/her access arm perfectly still for the entire dialysis treatment. Patients should be trained how to secure their needles so they won't come out during normal movements on dialysis so it should be unnecessary for the sake of the access that a helper do all machine adjustments. In fact, machines now have screens that are at the patient's height when sitting in a chair to make it easier for them to handle alarms and make machine adjustments without having to reach too far or stand up. Although in-center dialysis staff may require people to hold their arms still out of fear and misconceptions, some clinics allow patients on hemodialysis to exercise with their arms and legs during dialysis and none have reported lost needles or damaged accesses when needles were secured appropriately.

    Finally, having worked with dialysis patients for over 25 years, I have known some that dialyzed alone in the "old days" and a few that dialyze at home alone today. Those who I've spoken with about this say that the risk of dialyzing alone is worth the rewards of having control over their dialysis and having a more normal life. In the past, some patients dialyzed at home alone after losing their trained partner. Often they did not tell their healthcare team because they did not want to be faced with having to return in-center and live with the disruptions that in-center dialysis often has on one's life. As the machine makers say, it is best to have a partner when you do home hemodialysis. However, with our changing society, more and more people with kidney failure live alone and do not have someone they can depend on regularly to be present during home hemodialysis. Should these patients be forced to do in-center hemo if they can't do PD? If a patient doesn't have a partner, isn't it better for that person to be honest about what he/she wants to do so the patient, the doctor, and the home training nurse can make the decision about whether in this particular patient's case doing dialysis at home alone is safe and, if so, how to best prepare the patient for successful home dialysis? I'll be interested in hearing patients' responses to the concerns that you raised.
    Beth Witten MSW ACSW LSCSW
    Medical Education Institute, Inc.

  3. #3
    Join Date
    03-06-05
    Location
    Ottawa, Canada
    Posts
    864

    Default

    I dialyze alone.

    I don't see any of the points posted by the original poster as impediments. I've been trained to respond appropriately to any alarms and any situation, but, if it should be necessary, I can simply clamp, clamp, clamp, clamp and be done with it. I haven't had to do it yet, but I would only lose the cup of blood that is in the blood circuit - not a big deal if necessary. In case of a power failure, it's very simple and pretty fast to rinse back the blood using the hand crank on the blood pump. In a fire emergency, I abandon the blood circuit and go, if it's appropriate to go. A manual no-power rinseback is extremely simple on my machine and very easy for the patient to do. The only thing I have to make sure of is that I have a battery-powered light handy when I dialyze during dark hours (as I do in the evening sometimes).

    I do everything I have to do with either arm - whichever one reaches best. The blunt needles aren't going to infiltrate (ever try putting one through a vein wall if the needle isn't exactly in the right spot? -- it's almost impossible as it just gets deflected off to the side of the vein). But at any rate, I'm completely free to move my arm. The worse that will happen is that the veinous and/or arterial pressures will go up and trigger an alarm.

    I don't have to keep my fistula arm still, and it will be even less necessary when I switch to nocturnal, due to the low blood pump speed. Everything on the machine is within easy reach, and I don't have to stand for anything.

    Emergencies like hemolysis or air embolism could happen in a dialysis centre anyway (probably more likely in the centre, because I'm very careful about my own dialysis, a lot more than they are in a dialysis centre where there are 30 other patients at any given time). I should be able to recognize them if they happen and call 911. I don't live that far from the two hospitals with kidney departments. There is little risk of hypotension if I stick to the rule of not removing more than 1100ml per hour, because, I'm a stable patient as far as BP goes, and I would not have been certified to dialyze at home otherwise. If I sense any of the symptoms of potentially dropping BP, I can immediately check my BP with the machine, and if necessary, I can turn off the UF and infuse saline.

    If worse comes to worse, I just have to press a single button and the Lifeline people will send the police and the paramedics. They already know I'm hemodialyzing at home.

    I just took 7 vials of blood work last week - 6 pre-treatment, 1 post. No problem at all, and it turned out just great. The centrifuge only has to be within easy reach, which mine is. It's really not hard to do.

    Now, being a realistic fellow, I know that I could have a heart attack or something. That could happen at a dialysis centre too. Hopefully I would have time to push my Lifeline panic button which is always on my wrist.

    I've had my veinous line pull out twice at the dialysis centre. I'm actually more protected against that at home, because the taping is more secure (I use a Tegaderm, while they just use paper tape at the centre), and I have a leak alarm on the veinous site.

    I would be more concerned I guess if I lived farther away out in the country, but living right downtown, a paramedic station is just a couple of minutes away, and the both major hospitals are also only minutes away. I've had a couple of episodes of irregular heartbeat the first year I was on dialysis at the centre, and they could only do the same thing I can do for myself at home - phone 911.

    I think that using a conventional machine may actually be an advantage when dialyzing alone, because everything is there, accessible and upfront. I know exactly what is going on at all time, and I reasonably understand everything the machine is doing and all the possible parameters involved in a dialysis prescription, and I can anticipate problems to some extent before they become problems. It's not a "black box". I don't fall asleep for short daily, but hopefully I will when I switch to nocturnal at the end of the month. But the dangers are mitigated with nocturnal because of the slower blood pump and dialysate speeds.

    What more could an assistant do for me that I can't do myself? Nothing really, except get me a cup of tea if I should decide I want one during the treatment and I didn't plan it ahead.

    Other than that, if there are any risks, there are risks in everyday life just the same.

    Pierre

  4. #4
    Anonymous Guest

    Default

    Good points about the need for help at home--and also about having fewer symptoms when dialyzing more often at home. Most of the symptoms that Mmiller was worried about only occur when a lot of fluid needs to be removed in a short time during intermittent 3x/week short HD in-center. At home, going more slowly, these things don't happen.

    What about the dangers of getting suboptimal (though "adequate") dialysis in-center and being cared for by unlicensed techs who are also caring for many other patients at the same time? With maybe one licensed RN per shift?

    I'm not saying that self-dialysis is a great idea, but it may still be better than doing in-center hemo and only getting 9-12 hours of dialysis a week...

  5. #5
    Join Date
    07-02-04
    Location
    Seattle, WA
    Posts
    1,153

    Default

    The outcomes speak for themselves; there is no rational reason to deny adults without a partner the choice of healthy dialysis – daily dialysis in the comfort of ones own home. Adults should be treated as adults. Being able to make good decisions about one’s own life does not depend on one’s ability to make urine. Why should people with kidney failure give up their autonomy as adults?

    The risk/reward trade off of home self administered hemodialysis v. incenter dialysis is understandable to anyone who takes an interest. Once an adult looks at his or her options and decides self administered home hemodialysis is the right choice then that decision should be supported by providers and payors.

  6. #6
    Join Date
    04-21-05
    Posts
    22

    Default Need more viewpoints

    So, apparently, the recommendations of the manufacturers and the FDA are to be ignored. If you want to do it daily at home alone, go ahead.

    I expected the operator of this website and some of the patients to support self-administered home hemo -- you medical radicals!

    Let's hear from representatives of the manufacturers, FDA, nephrologists, and the clinics. It would be interesting to hear from an attorney who represents a clinic.

    P.S. It would be enjoyable if we could use these boards without Beth Witten's verbose opinions on every post. Thought the site was for patients, not a forum for Witten to argue with the participants.

  7. #7
    Join Date
    07-02-04
    Location
    Seattle, WA
    Posts
    1,153

    Default Re: Need more viewpoints

    Quote Originally Posted by mmiller
    ...It would be enjoyable if we could use these boards without Beth Witten's verbose opinions on every post. Thought the site was for patients, not a forum for Witten to argue with the participants.
    You haven't said what your connection to ESRD is mmiller...as far as Beth's posts go I welcome them...not sure why you'd think the moderator of a board should limit his/her posts. The British have a word for that - cheeky.

    I think it is helpful to have posters who are upfront about who they are and the perspective they are giving. As has been said before this board seems to function best when the posts reflect a patient's point of view...one does not need to be a patient to contribute to the discussion. I for one welcome Marty, Dori and Beth's insight. We need more voices, not fewer. I'd welcome you too mmiller, if you'd say who you are... so one would know the point of view your opinions reflect.

    Why do you care if someone is self treating or has a partner? What's it to you?

  8. #8
    Join Date
    08-17-04
    Posts
    2,125

    Default

    Hi y'all,

    Mmiller wrote:
    I expected the operator of this website and some of the patients to support self-administered home hemo -- you medical radicals!

    - - - - - - - - - - -
    (Okay, so I haven't figured out the quote function...).
    Speaking as a creator of this site--along with Beth--our "official" position, as we state in the descriptions of each modality posted on this site, is that home hemodialysis should be done with a partner because the blood is outside body (unlike PD). We are not medical radicals and don't much appreciate that sentiment.

    That said, it is up to CMS and individual clinics to determine the rules for participation in home hemo. If some clinics choose to permit patients to dialyze at home alone, we have to presume that they have a good reason for doing so. As far as I'm aware, there has never been a lawsuit related to a problem that occurred during home hemodialysis, whether done alone or with a partner. If someone can find and cite such a suit, we'd be very interested to hear it.

    And as far as Beth's (or my) posts, we welcome all posters (of course subject to the message board rules, which are also posted). The patient boards are for issues CONCERNING patients, and patients begin most of the threads and supply most of the responses as well. Our purpose in creating this forum was to share accurate information and provide support, so if we can help, we will certainly do so, and we also invite other experts to respond to certain questions that we're not able to answer ourselves.

  9. #9
    Anonymous Guest

    Default

    I have no idea what your agenda is, I suspect maybe you are a tech worried about your job (which is ridiculous there will always be more patients in center than at home), but I don't think you are well educated at all about the risks of self home hemo.

    First the new governmental guidelines have quite a bit about self home hemo and are very supportive, something they wouldn't be if it were all that dangerous.

    Second, in all my searching I have yet to hear a story of someone dying while doing self home hemo. The people I have heard of dying at home during dialysis have died of a heart attack something that can happen without being on dialysis, and these people had a helper and they still died.

    Self home hemo is for the healthiest patients, and patients who can learn easily and follow directions. I feel it is very safe. I will address your "concerns" one by one:

    -- A power outage, fire, plumbing problem, or other disaster could make it very dangerous for the patient to terminate treatment.

    How so? It is as fast for me to get off the machine, in fact faster than having to call for my assistant to get me off the machine. In the event of a major disaster we are trained to clamp and cut and get out, just the same as the emergency procedures in clinic. I guess it might take a total of 5 or so seconds to get off the machine.

    -- The patient could fall asleep or pass out due to low blood pressure or other health problems. An assistant is needed to ensure prompt medical response and proper machine function.

    Sleeping is fine on dialysis or haven't you heard of nocturnal dialysis. Low blood pressure is seldom a problem as we don't have much fluid to remove as we do dialysis daily. Also we are very aware of how we feel and can check our b/p and add saline if needed. We aren't relying on others to "believe" us that we aren't feeling well, we are in control of our bodies and our treatment and therefore don't have these kinds of problems.

    -- Reaching for machine controls or performing other tasks could cause bleeding from the cannulation site. An assisant who performs these tasks allows the patient to safely dialyze.

    Our sites are securely taped, we aren't prisoners to our machines. The machine is right next to us and easy to access. I safely dialyze every day and take care of any alarms.

    -- In an emergency, the patient may have to perform a manual rinseback, which can be difficult or impossible to do alone. Similar problems may occur if the patient needs to interrupt treatment and perform blood recirculation.

    Why do you think this is so hard to do?? We simply hand crank the pump and return our blood. Blood recirculation is easy to do with the connection we keep close to us at all times. However, I will say this is something I have never had to do. Remember if worse comes to worse there is no reason we HAVE to return the blood we can clamp and disconnect if there is a problem, since they happen so rarely it really isn't an issue.

    -- The patient with a fistula may have difficulty getting up from a chair after treatment since one arm may be immobilized due to clotting.

    I have no idea what you mean here. I have a fistula and it is never "immobilized". Why would I need to get out of the chair (even though I can get up when holding my sites). I stop dialysis, start acid clean, remove my needles and tape my sites, then finish cleaning up etc. I never have any issues. Again, this shows a lack of knowledge both of dialysis and home dialysis.

    -- Some patients require assistance performing maintenance as well as pre-treatment and post-treatment service on their hemo machines. These tasks may have to be performed while the patient is seated for dialysis.

    Then maybe they shouldn't do self home dialysis. These taskes NEVER need to be performed while the patient is seated for dialysis. I personally can't imagine needing assistance to do my monthly maintenance or the very simply pre- and post-treatment rinses and disinfections. It is as simply as pressing a couple of buttons and inserting wands.

    -- Machine malfunctions and alarms may require the help of another person in the room. The patient could cause infiltration or other problems with their cannulation sites if they try to perform recovery operations during dialysis.

    I suppose this might happen, however most of us use buttonholes and dull needles so our risk of infiltration is minimal. Infiltrations happen many times to patients in center so obviously having someone else responsible for you doesn't help. Most alarms simply require resetting, if there is a major problem with the machine you simply get off, none of us, with partners or without, "repair" our machines, we have techs for that. FWIW I have never had a problem with alarms causing infiltrations since I have been on dialysis and I have alarms at least once during most of my treatments.

    -- Blood draws, centrifuge operation, and refrigeration of blood-test tubes require the assistance of another individual if these tasks take place during dialysis.

    Why?? I can draw my blood, put in in the centrifuge and refrigerate it when I get off which is in plenty of time. If I was concerned I could put in on ice until I get off. Works fine.

    Once patients get hemo machines in their homes, they can do whatever they want with them. However, responsible clinics will not train patients in self-hemodialysis. Likewise, any prudent individual will refrain from engaging in a serious medical treatment without the assistance of another. For legal-liability reasons alone, Aksys and NxStage should do everything they can to discourage and prevent self-dialysis at home.
    I think you are very self righteous in these comments. My very responsible clinic trained me, and I consider myself extremely prudent and intelligent and I chose a better life, ie self home hemo, and am happy with my decision. I wish people like you would educate yourself and quit making it difficult for people to get home hemo, it is our informed decision, NOT yours.

    Cathy

  10. #10
    Join Date
    03-06-05
    Location
    Ottawa, Canada
    Posts
    864

    Default

    Medical radical! ??

    Well, it's not like home hemodialysis is new. Not radical, but maybe reactionary

    I'm aware of the risks, and they are risks I'm prepared to accept for the immediate and potential benefits. I've seen people gradually decline in health over time on regular hemodialysis, to the point where they can't even be on the transplant waiting list anymore - permanently. I've known some die of cardiac complications not at dialysis but in between treatments. I think that with daily hemo, I'm minimizing my risks in other ways because it keeps me healthier. I sure am not trading in my current hemoglobin and other lab results for what they were when I was in centre, that's for sure, and I ain't giving up my current diet either.

    I happened to have a dialysis treatment in centre a couple of weeks ago because they wanted to do a transonic on my fistula. Let me tell you, it's a good centre, but, going back there, I was reminded about why I wanted to do home hemo in the first place. I have much less exposure to sick people at home than in a dialysis centre, I don't have work around their schedules, I'm much more attentive to all aspects of proper sterile technique, etc. Plus, if that's not enough, because I'm a home hemodialysis patient, I am privileged to actually be followed a lot more closely and by the same small team of nurses under the same very interested and very motivated nephrologist.

    I don't know about you guys, but I consider myself lucky to have been accepted into the program.

    Pierre

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