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UkrainianTracksuit
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« on: January 26, 2016, 04:08:53 PM »

Hi,

Does anyone here do their home hemo with the help of a professional health care aid?  Yes, I know, for the most part that most here do it by themselves with the help of a care partner (non-professional).

That option is available for me but I don't really see the point to it if someone a) has gone through training b) has all their faculties (which you need for training anyways...)

On the other hand, I like the idea of not burning out a care partner because it is the person's job.

I'm just wondering if anyone has any experience with a set up like this.  How did it work out?  Thanks.
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UkrainianTracksuit
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« Reply #1 on: January 26, 2016, 05:07:21 PM »

Sorry, I noticed a similar post down the page.  My eyes are obviously not working.  But anyways, may be there is an update to the information.  If the mods feel that this should be deleted due to my stupidity and blindness, go ahead.   :shy;
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kickingandscreaming
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« Reply #2 on: January 26, 2016, 06:12:41 PM »

This is something I have thought a lot about.  I do not have a live-in care partner and I will eventually need hemo (maybe sooner than later) and really refuse to to in-center for the rest of my days.  I am needle phobic (not when someone else does it).  I was in touch with a young lady who had made arrangements with a local nursing school to set up an internship of sorts for student nurses.  One at a time would go through the home hemo training and would serve as her care partner.  Makes good sense to me.  I even looked it up and there are several nursing schools near where I live.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Hootie
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« Reply #3 on: January 26, 2016, 07:17:21 PM »

I really think that is something that the industry needs to tackle to make that available. I tried a while back to get the HHD nurses to do for us just on a contract basis during my travels but they would not do based on "scheduling". The nephrologist said we could go for 4-5 days without dialysis provided she took lasix during time away. That worked out fine.

I know you are asking to help on a permanent basis. Really think there is a need for that service. It would take a lot of people from in center to HHD in a second and provide a much better quality of life for them. "Home Health Nurse for Dialysis" has a great ring to it...money would be a problem for most though. Think of the money savings from Medicare for less hospitalizations for a better health for the patient.....that would be a great evolution for dialysis patients.
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Caregiver for wife with ESRD and type Type 1 diabetes (almost 50 years).  HHD with NxStage machine January 2015.
Transplanted  December 7, 2016
Charlie B53
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« Reply #4 on: January 27, 2016, 10:59:19 AM »



The possibility of student nurses could be great within those areas, elsewhere that could be a problem.  The idea does have some promise.  The largest hurdle could be funding.  Medicare many times does not make a lot of sense.  Not willing to pay for many measures that would ensure better treatments at a lower cost does not always seem to be their goal.

I don't necessarily agree with a Neph that claims it can be acceptable to miss treatments for 4 or 5 days as long as the patient is taking lasix.  This statement may be valid only for a patient that is still producing a volume of urine.  Many do not, the lasix will not cause scar tissue to function.

When or if it comes time for me to stop PD and go to HD I know my Wife will go to training with me.  Whether she would actually help me is a whole different story.  I seriously doubt that she would be able to needle me even after training.  It would be solely up to me to overcome my needle-phobia and do what I must to continue.  Not an easy task, one that I do not look forward to.  Who knows what's in store for me?   Only time can tell.
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Hootie
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« Reply #5 on: January 27, 2016, 12:32:41 PM »

Charlie,
Let me clarify...Dr said we could do this as a one off for a particular trip. If things got worse while I was out, she had it set up that my wife could go to center to get dialysis. She did not okay it for multiple times. My wife still makes some urine. This was for a trip last March when we were only a little over 6 months into dialysis. I did not mean to indicate that this was okay for routine trip and no treatment.

I remember asking the Dr. at the start of HHD if we could just do it every other day or 4 days and week....Her answer came back very quickly and emphatically "no sir" and explained why. Now I understand the whole process better....I have learned a tremendous amount about dialysis, the machines, diet, and what really works. 5 days a week, slow pulls and time on machine works...
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Caregiver for wife with ESRD and type Type 1 diabetes (almost 50 years).  HHD with NxStage machine January 2015.
Transplanted  December 7, 2016
UkrainianTracksuit
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« Reply #6 on: January 27, 2016, 04:19:01 PM »

Thanks for the replies.

From kickingandscreaming and Hootie's comments, I see the use of a professional aid is looked upon positively.  That's good.

I will openly say, as I have done many times before, I have no knowledge of Medicare.  So, if I am ignorant of that part of the conservation, that's why.  But, in some cases, financial questions are not a concern.

I still have some more specific questions about this set up though so anyone with experience would be encouraged to pipe in.  Or, home hemo people give an opinion.

1) If decided to go down this route, how was your training in home hemo?  As in, the patient was trained though the health care aid will be doing the work?
I think a sub-comment to this would be that I would prefer training if anything were to go wrong with the aid.  (For some reason.)  A second set of eyes...  This could be a moot point because it seems as though those that had a medical professional were temporary arrangements.  Training would be required to continue at home in what I have read here.
2) Is it preferable to be able to do your own care (feeling 'in control', 'freedom', 'knowledge') or is this null in the decision?  2b) Was there less stress to patient / care giver?  Did continued feelings of reliance on medical professionals dampen the opportunity?
3) Besides taking care of treatment, what did the aid do during the session to pass the time?  Just wondering what should be offered during this time.

Right now, it is being presented as a better quality of life option like Hootie mentioned.  And a professional aid is presented as an option to reduce stress; make sessions at home more relaxing.

With privacy laws (understandably), references are difficult to procure unless other patients offer to speak about their arrangements.  So, though I am told people do it, and if they are unwilling to share their experiences with strangers, who is there to ask?  (From a patient's and not medical facility perspective.)

I'd like any input please. 
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Simon Dog
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« Reply #7 on: January 27, 2016, 04:37:08 PM »

Are you referring to "staff assisted home hemo", in which a RN or dialysis tech comes to your house, sets everything up, punctures you, stays for your entire treatment, then pulls your needles and strips down the machine?   This is not covered by medicare, and is very pricey due to the number of hours of skilled time involved.

The disadvantages are co$t and scheduling - you lose a bit of the flexibility of home hemo if you have to wait for someone to come to your house at a pre-arranged time.

Quote
) Is it preferable to be able to do your own care (feeling 'in control', 'freedom', 'knowledge') or is this null in the decision? 
I have never had a clinic or hospital deny me self canulation, so I don't think that would be any different at home.   You may not be allowed to use the controls on the machine or set it up with staff-assisted, since you would not have been formally trained

Quote
3) Besides taking care of treatment, what did the aid do during the session to pass the time?  Just wondering what should be offered during this time.
The training RN stayed for at least one entire treatment at my house.  She appreciated a wireless internet connection.
« Last Edit: January 27, 2016, 04:39:13 PM by Simon Dog » Logged
hatedialysis2
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« Reply #8 on: January 27, 2016, 05:40:33 PM »

Nxstage has dialysis centers where they give patients greater flexibility of choices when it comes to where to dialyze swapping between home and their center, with or without the assistance of professionals.   I wish I had one near by :

"We understand the need for more patient access to therapies beyond the three days a week in-center model. We are working to expand patient access to the life-changing benefits of home therapies, as well as to flexible in-center options at the frequency and duration that work best for the patient. Our care model is designed to allow patients to take control of their dialysis and to allow physicians the flexibility to prescribe what is truly best for their patients".

–ROBERT BROWN, PRESIDENT - NXSTAGE KIDNEY CARE

http://www.nxstagekidneycare.com/why-nxkc
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UkrainianTracksuit
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« Reply #9 on: January 27, 2016, 06:58:27 PM »

Yes, I think the term would be staff assisted home hemo.  My nephrologist simply called it private nursing.  Though I don't need anyone else to tag along for bathing, meds etc etc so, just home hemo if I follow that path.   

I'm not in the United States (closest I get to there is time spent in Canada) so therefore Medicare is not a concern.  I do not have access to NxStage; the machine would be supplied by Fresenius.  I know it is costly but as stated, finances aren't a concern.  Nurses in the CIS are not paid as highly as those in the USA (still well trained) so if one makes the offer (naturally through appropriate channels) to pay higher than the government rate, it is still affordable to those with the proper means.  (Going "extremely good" yearly wage in a major city is 6000 USD (approx) so private nursing organizations offer double or triple this rate.)  Still extremely affordable and subject to oversight.  Though some (ok most) of their personalities suck... I think personalities must click if this health care aide is assigned only to you.

Yes, I can understand having pre-arranged times would be limiting.  It would take a lot of scheduling but "I figure" evenings after work would be my 'go to' spot.  So, that is a con.  As well as not being trained to manage the machine.

I figured that a health care worker would be happy with wifi.  And a television.  And some tea.  But, this is the part that makes me most uncomfortable.  Sessions are long enough to sit through and it seems wasteful for someone to sit for 'intervals' of work.

I like the idea of home hemo as it stands and would be capable of doing it myself.  But, this is being offered as easier and less stress.  Just wondering if people found it to be this way...

I guess the question is: if finances were not a concern, would a person on home hemo prefer to do it themselves or have someone do the tasks for them?  I'm on the fence.
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Simon Dog
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« Reply #10 on: January 27, 2016, 09:13:12 PM »

Quote
Nxstage has dialysis centers where they give patients greater flexibility of choices when it comes to where to dialyze swapping between home and their center, with or without the assistance of professionals.   I wish I had one near by :
I had a situation where I really needed to spend D time with my wife and had to delay a treatment until she was at work.  I called my local clinic the next AM and bingo - one of the training RNs was in, and the training room was unoccupied so I was able to use that NxStage.   It's not as regularly reliable as what you probably get at a NxStage clinic, but often is.

I personally have a strong preference for self care over someone else taking care of things.    But,, opinions may differ as this is a personality thing.
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Hootie
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« Reply #11 on: January 28, 2016, 03:06:18 AM »

From all my readings on the subject of self care versus caregiver care, it appears that the consensus is that the patient should be able and do most of the treatment, aka setting up machine, cannualizing, monitoring machine and tear down. Most patients would trust themselves more than a third party over the long term. With that being said, others want to the caregiver to have a more active role.

 In our situation, as a caregiver, I do the ordering of supplies, set up, cannualizing, flow sheets to start, and manage machine. Patient takes blood pressure and does flow sheets when machine has stabliized. I pull needles and clean up while she holds pressure on gauze. She takes blood pressure and weight at end.

One thing that is important for her, is for me to give her some quite time during treatment so she can read or surf Internet. I leave room to accommodate that wish. I am downstairs within ear shot of machine. If an alarm goes off, I move in or she texts me on the code. She will text me the blood pressure during treatment and we make adjustments accordingly. It works for us. I tell you all this details just to let you know what roles are involved and potential division of labor.

It depends on what works for you. If you deploy a nurse caregiver, that person could do all or some of that. Technical skills, patient interaction skills and personality matches are all important. Good luck in your pursuit....just remember one important issue...this is a difficult but manageable disease. It does get easier over time to manage.

However, the most important thing that the patient and caregiver can bring to the table is a good attitude.
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Caregiver for wife with ESRD and type Type 1 diabetes (almost 50 years).  HHD with NxStage machine January 2015.
Transplanted  December 7, 2016
cassandra
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« Reply #12 on: January 30, 2016, 12:24:40 PM »

I think that when a patient is physically and emotionally capable of doing everything themselves that that would be preferable to an assistant. an assistant would take the flexibility away like that for D and being dependent on paid people seems to defeat at least one major advantage of HHD (independence)

I remember in some parts of The Netherlands in the 80's that you could have assistance with just the needling. But how that worked I don't know (I'll look in to that sometime).

But than again I wouldn't mind having some help sometimes with ...... Actually I wouldn't know. It ís a very personal thing and I think that the whole D situation needs adjusting to the needs and possibilities of these times.
I also think 'countries' should talk more, and listen more to each other. In f.e. Canada where there's selfcare clinics. Brilliant idea.
In 'my' hosp more people have been given the opportunity to dialyse 4 or 5 times a week now, just because The Head Neph was so impressed with how much better I was doing on (then) 5 x a week. Why didn't he know that. Even though Nxstage was already used down south for years.

Even if money would not be an object I would still prefer doing everything myself for as long as possible. Most of the complications of my 'original' decease were caused by paid people. Like mechanics in a garage f.e. Misstakes are made by everyone who does anything. I make plenty myself but I wouldn't wait for the next shift to sort it out. Okay so I'm lucky that I always have my sweet people from this site of course

And I'm a bit of an aggressive person (in speech) to people who don't respect my medical needs as I see them, so

Love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
komomai
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« Reply #13 on: February 08, 2016, 08:43:38 PM »

Aloha I'm doing home hemodialysis here in Okinawa, Japan.  I started out doing PD then with an infection, had to go the hemodialysis route.  The hospital here in Okinawa is called Chubu Hospital where I've done all my PD and HD training.  For doing the home hemodialysis my Doctor told myself and my wife that we we would train on the machines in the hospital, we got to the point where I would  come in prime my machine, set my treatment times and water draw, hook my self up and when done disconnect.  This went on for about 4 months, then they brought in a brand new model which I was told would be my machine that I would take home, another 4 months of training with the newer model, then I was told on Feb. 2015 that I could go home with the machine.  So everyday when I'm ready I call my wife and tell her to begin the priming and set up for dialysis, when I get home, I grab a bite to eat, weigh myself and hook myself up and start my treatments, I do 3-4 hours of treatment 6-7 times a week.  I've done everything myself a couple of times, but for safety purposes my wife is somewhere in the house and she can hear the alarm if it goes off and respond.  I gotten used to doing home hemodialysis and I love it, just the freedom of setting my own schedule and doing it in the comfort of my own home makes me happy. :bandance;
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PrimeTimer
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« Reply #14 on: February 08, 2016, 09:02:50 PM »

I gotten used to doing home hemodialysis and I love it, just the freedom of setting my own schedule and doing it in the comfort of my own home makes me happy. :bandance;

Congratulations! Must feel pretty good achieving home hemo. Very glad it is working out for you. Great story!   
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
kickingandscreaming
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« Reply #15 on: February 09, 2016, 07:06:26 AM »

I wonder why no one has picked up on my idea to engage a local nursing school to create a program for their nursing students where they can intern while being a care partner to a HHD person (like me, maybe some day).  I think that sounds like a win-win situation.  There isn't the expense of paid nursing, and the students learn valuable lessons in HHD and nursing skills.  The nursing intern could go through the HHD training with or without the patient, and when their internship is over, another student (who has been trained) takes over.  Rinse and repeat.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Simon Dog
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« Reply #16 on: February 09, 2016, 09:42:35 AM »

I wonder why no one has picked up on my idea to engage a local nursing school to create a program for their nursing students where they can intern while being a care partner to a HHD person (like me, maybe some day).  I think that sounds like a win-win situation.  There isn't the expense of paid nursing, and the students learn valuable lessons in HHD and nursing skills.  The nursing intern could go through the HHD training with or without the patient, and when their internship is over, another student (who has been trained) takes over.  Rinse and repeat.
My wife is a nursing professor, so I am familiar with the drill.

When a student is doing a clinical in a nursing program, (s)he is under the direct supervision of an instructing RN at all times, even for those skills on which the student has been trained and checked off.  This includes tasks that the patient would be performing on their own if home (for example, administering meds, doing a PD exchange, or changing a colostomy bag).

I seriously doubt any nursing program would cut any student loose for "unsupervised" practical experience due to legal and liability reasons.  There are also things that require a nursing license (or a tech certification under RN supervision) - for example, sticking a needle into someone (other than an unpaid, non-professional, care partner in a home care setting), so even if you plan could be implemented, the student would be helpless to assist with canulation, access problems, etc.
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iolaire
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« Reply #17 on: February 09, 2016, 12:04:08 PM »

I wonder why no one has picked up on my idea to engage a local nursing school to create a program for their nursing students where they can intern while being a care partner to a HHD person (like me, maybe some day).  I think that sounds like a win-win situation.  There isn't the expense of paid nursing, and the students learn valuable lessons in HHD and nursing skills.  The nursing intern could go through the HHD training with or without the patient, and when their internship is over, another student (who has been trained) takes over.  Rinse and repeat.
Usually with internships you are supposed to be leaning something in a supervised environment.  I don't think un supervised work would count.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
kickingandscreaming
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« Reply #18 on: February 09, 2016, 12:32:35 PM »

It may not be entirely parallel, but when I was in training to be a psychologist I had to do a "supervised" internship for 2 years.  It amounted to someone signing off of it and doing regular supervision sessions.  No supervisor ever sat in on any of my sessions.

Having a nursing student (even one who is unable to help with cannulation) would still be a help to someone who isn't even allowed to do HHD because they are alone.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Simon Dog
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« Reply #19 on: February 09, 2016, 12:59:07 PM »

The irony is the Fresenius and DaVita doctors will assist you in a smooth transition to death if you decide to discontinue hemodialysis because clinics suck, but will not allow you to choose to accept the risk of flying solo.
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Michael Murphy
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« Reply #20 on: February 09, 2016, 06:55:52 PM »

I do know of several clinics in upstate New York that support patients living alone on home hemo. They require a broadband internet connection and scheduled times so you can be monitored from the clinic.  I believe if there is a problem they call the local rescue (ambulance) service to come and disconnect if necessary and transport it needed.
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Simon Dog
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« Reply #21 on: February 10, 2016, 07:32:30 AM »

I do know of several clinics in upstate New York that support patients living alone on home hemo. They require a broadband internet connection and scheduled times so you can be monitored from the clinic.  I believe if there is a problem they call the local rescue (ambulance) service to come and disconnect if necessary and transport it needed.
I think NY requires home monitoring which makes this practical.    Clinics that do not require home monitoring are not motivated to make the investment just to support solo fliers.

I also believe the NW Kidney Centers allow solo without remote monitoring.
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