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Author Topic: Staff-assisted home hemodialysis  (Read 4273 times)
mrstrekkie84
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« on: July 24, 2015, 12:03:47 PM »

Anyone here on staff-assisted home dialysis? Tell me about your experience.
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Bambino_Bear
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« Reply #1 on: July 26, 2015, 07:54:34 PM »

I did not even know there was such a thing!  Where do you live?
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I am a caregiver to my wonderful husband,  He is 36 and started PD October 2013. We have several living donors waiting to be tested for a transplant. Dialysis is a bridge to get us where we need to go. 
~Life is what you make it~
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« Reply #2 on: July 27, 2015, 07:02:55 AM »

Staff assisted is like clinic - a staff member sets up the machine, sets your needles, and monitors the machine.  It's very labor intensive ($$$) since it requires a dedicated tech for all the setup, run and teardown/cleanup time for your machine.
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mrstrekkie84
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« Reply #3 on: July 27, 2015, 09:21:24 AM »

We live in Houston, TX. My husband has been on staff-assisted home hemodialysis for the past year. We have the machine and the supplies set up in a guest bedroom and the center sends over a nurse 3 times a week.  My husband was diagnosed 3 years ago, but since being on staff-assisted, he has never felt better. His bloodwork look great, he has more energy, he's happier, we even have weekly date nights and there's intimacy!

Unfortunately, insurance said his time is up. We are having to move to in-center dialysis, or we would have to learn how to perform hemodialysis at home. My husband is deathly afraid to cannulate himself, and so am I. PD did not work well for us. So in-center it must be. Im just afraid his quality of life will decrease. Nothing compares to the comfort and privacy of dialyzing in your own home....

For those of you who have tried it, how scary is it to cannulate yourself, or your loved one??
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MooseMom
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« Reply #4 on: July 27, 2015, 11:09:32 AM »

mrstrekkie84, which company is providing staff-assisted home hemo to your husband?  I've never heard of an insurance plan that covers this, so BCBS in Texas must be pretty generous!

You are certainly correct that nothing beats being able to dialyze at home, but most people who do home hemo run five days a week.  While it is wonderful that your husband has someone help him dialyze at home, the fact remains that he is getting only three treatments a week which really isn't optimal.  Still, it is better than three treatments a week in a clinic.

Most people are deathly afraid of self-cannulation, but they do it because they want to be able to get treatment at home, and to do that, it's a skill one has to learn.  If you go to the home dialysis forum here on IHD, you'll find posts from people who do home hemo, and maybe their experiences can guide you.

Has your husband considered transplantation?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
mrstrekkie84
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« Reply #5 on: July 27, 2015, 01:00:52 PM »

Lol I thought we had good insurance but BCBS has been flaky lately. We haven't had to pay anything for the past year. Our dialysis center told us insurance was taking care of everything. Last month, this same center told us we had accrued a $113,000 bill (WTF?!) I have spoken to the insurance company and I am getting different answers regarding my husband's benefits. The dialysis center is now telling us we have a week to find another center, unless of course we can come up with $113,000. Needless to say, things have been stressful. I hate to have to take him to a center but it seems to be our only option until we can get things straightened out with BCBS.

He is on the transplant list. Just a waiting game now...
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justagirl2325
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« Reply #6 on: July 27, 2015, 01:04:14 PM »

A bit different here in Ontario, Canada.  Home-hemo is covered under our universal health care.  When we started they paid for the plumber to come in, they gave us a machine to use and all the supplies are covered.  We pay hydro and that's basically it.  My husband was advised to dialize 5 days a week but he made the personal choice of every second day.    If you don't do home-hemo (I'm ignoring PD for the moment) you must attend the hospital 3 times a week, when they tell you to come.

Home-hemo has to be significantly cheaper than hospital hemo for the government.  But the % of people doing it is very small.  There are stats for 2013.  8,647 people received hemo in Ontario in 2013.  Only 616 of those were at home. 

They are now considering a pilot project where the government would hire and pay for a PSW (personal support worker who basically works at minimum wage) to provide care for someone to receive home hemo that normally wouldn't or couldn't choose to. 

Governments work slow, so it will likely be sometime before that happens (if at all).
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justagirl2325
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« Reply #7 on: July 27, 2015, 01:06:31 PM »

Oh and we have just started to put the needles in his fistula ourselves.  It's not easy but it's not scary at all (and I never thought I could do it).  The only thing scary about home hemo so far is when his BP crashes. 
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Hootie
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« Reply #8 on: July 27, 2015, 04:38:20 PM »

All of us are afraid of  cannualization at the beginning..we get training and under the careful supervision of the dialysis nurse we slowly learned how to do it....I was probably more afraid than most....but each day it gets easier. Attitude is the key. If you know it's something that you have to do, you just do it for your loved one. After 7 months of doing it at home, it's now second nature....not quite like you are brushing your teeth, but much easier.  :bandance;
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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
Zach
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« Reply #9 on: July 28, 2015, 07:35:33 AM »

Years ago, there was a company, Home Intensive Care, which provided staff-assisted home hemodialysis.
It was reimbursed by Medicare, back when there were two different payment methods (Method I and Method II) for home hemodialysis (and maybe PD as well).

In the late 1980s the company was forced to stop these services, due to what some claimed was overcharging Medicare.

U.S. to Reduce Its Payments For Home Kidney Dialysis
http://www.nytimes.com/1988/11/30/us/us-to-reduce-its-payments-for-home-kidney-dialysis.html
By MARTIN TOLCHIN, Special to the New York Times
Published: November 30, 1988

WASHINGTON, Nov. 29 The Department of Health and Human Services, beginning Jan. 1, will reduce payments for Medicare patients who receive professionally assisted kidney dialysis at home.

Private insurance companies under contract to the department recently completed their evaluation and reduction of these payments at the agency's behest.

The department contends that Congress never intended to provide this home dialysis service, which it says is nearly twice as expensive as that in hospitals and clinics. Critics respond that Congress supported home dialysis as a desirable alternative to hospital and clinic care in terms of costs to the patient and society and that the H.H.S. action will effectively end the program, which is used by as many as 5,000 people. Court Arguments Scheduled

A Federal court is scheduled to hear arguments next week in a lawsuit brought by Home Intensive Care Inc., a Florida-based company that serves more than 1,000 people who will be affected by the H.H.S. action. The company, which Blue Cross and Blue Shield of Florida notified of the planned reduction in payments, claims that H.H.S. has abused its authority.

The arguments will be heard in Federal District Court here by Judge Stanley Sporkin, who last August struck down the H.H.S. decision not to pay for more than four home visits to Medicare patients by nurses or health aides. Such a policy, Judge Sporkin found, would have ''a devastating impact'' on elderly or ailing people.

In both of its decisions, H.H.S. is seeking to save money and reduce the Federal deficit.

Congress in 1972 extended Medicare to include kidney dialysis for people of all ages. The coverage is triggered after a year of dialysis treatment, and about 90 percent of all dialysis patients are covered. Private insurance companies such as the Blue Cross & Blue Shield Association administer the Medicare dialysis program under contract from H.H.S. and are required to follow its directions. $2 Billion a Year This year Medicare will pay $2 billion for the dialysis of about 100,000 Americans, of whom 20,000 are treated at home.

Nearly 5,000 of the latter are on hemodialysis, in which the patient's blood is circulated through an artificial kidney machine that filters out toxic wastes before returning the blood to the patient. It requires someone to help the patient, but H.H.S. does not know how many people are assisted by medical professionals.

The remaining 15,000 patients treated at home receive peritoneal dialysis, in which the blood does not leave the body but is filtered through the peritoneal membrane in the abdominal cavity. There is no need for outside assistance.

H.H.S. says that patients receiving hemodialysis at home cost Medicare about $3,000 a month, as against $1,800 for the same treatment in hospitals and clinics. Those who are treated at home and deal directly with suppliers are reimbursed under an H.H.S. method based on ''reasonable charges.'' The others are reimbursed based on a hospital or clinic's composite costs. Question of a Loophole

In February, H.H.S. directed private insurers to examine their reimbursement policies with a view toward lowering them to the hospital-based price. It believed that some suppliers, including Home Intensive Care, had found a loophole in the law, which it said was not intended to cover professionally assisted home dialysis.

''We shouldn't be paying nearly twice as much under one method compared with another method,'' said Kathleen Buto, acting director of the Bureau of Eligibility, Reimbursement and Coverage of H.H.S.'s Health Care Financing Administration. ''The charges have been creeping way up, and we have to find a way to bring them down.''

''Congress never intended to have Medicare pay for staff-assisted hemodialysis,'' she added. End of Program Is Feared

But critics say that a goal of the 1972 legislation was to encourage home hemodialysis. H.H.S. says that Congress envisioned family members helping dialysis patients, but critics of the department respond that that proved unrealistic and that the program hinged on professional assistance, which increased its cost.

The critics say that the health department's directive will result in the end of this federally funded program because patients' relatives usually have psychological problems administering hemodialysis. Patients could still hire professional help and pay the balance in cost, they say, but because of the expense many patients would have to abandon home treatment and return to dialysis centers.

''The clear result will be to deprive individuals of the right to receive renal dialysis in the home setting,'' said William A. Dombi, director of the Center for Health Care Law, a division of the National Association for Home Care. ''Access will be diminished, if not totally eliminated. The structure that they're trying to impose will make it impossible for the service to be delivered.''

Many areas of the country lack hospitals and clinics that provide dialysis, and some patients now receiving hemodialysis would have to travel hundreds of miles to receive the treatment that they now get at home. In addition, some of the nation's 1,400 dialysis centers already are overcrowded.
« Last Edit: July 28, 2015, 07:38:29 AM by Zach » Logged

Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
Simon Dog
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« Reply #10 on: July 28, 2015, 10:32:37 AM »

Quote
My husband is deathly afraid to cannulate himself, and so am I.
Doing it for the first time is scary, but you have nothing fear but fear itself.

Once you learn, you will be better at cannulating your own fistula than any tech (A gen-u-high high school graduate with a 6 week class) and probably better than most RNs or MDs.   It's also less painful; less likely to infiltrate; and if you infiltrate, you will catch it sooner (I have fond memories of a tech pushing al 10cc in the syringe into an infiltration).

I was scared shitless of cannulation when I started, but I was absolutely determined to make my escape from the clinic.   It doesn't bother me now, and I insist on self-cannulating even when I am in the clinic or hospital and medical staff is available to do that for me.

At this point, I would be much more nervous letting someone else cannulate me that doing it myself.  With practice, you can probably get to that point.

If you want to tread gently into the water, ask if you can get cannulation training while you are an in-center patient.

Quote
A bit different here in Ontario, Canada.  Home-hemo is covered under our universal health care.
The fundamental problem for the original poster was not getting home hemo, but the "Staff assist" option.  Does your universal care in Canada eh? include staff assist?
« Last Edit: July 28, 2015, 10:40:39 AM by Simon Dog » Logged
justagirl2325
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« Reply #11 on: July 28, 2015, 10:56:28 AM »

Not yet...they are only looking at it as a pilot project. 

I think it would be a good idea to encourage more people to do home hemo.  For instance, if  someone with a spouse or able care partner refused home-hemo on their own, they could be supplied with a staff assist and then they may over time feel confident enough to do it on their own?

But I can see it working in reverse as well.  If I had the option to have my husband at home with a staff assist person, maybe I wouldn't have learned it?  I'm really not sure if that would be a good thing or not. 

But I might be starting to ge too philosphical and hijacking the thread.  Just wanted to say that Ontario doesn't yet but they are considering it.
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Simon Dog
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« Reply #12 on: July 28, 2015, 12:37:30 PM »

Quote
If I had the option to have my husband at home with a staff assist person, maybe I wouldn't have learned it?
Unless there are significant co-morbidities, it should not be necessary for the care partner to learn puncturing.

Quote
For instance, if  someone with a spouse or able care partner refused home-hemo on their own
Home hemo won't succeed unless the patient wants it to.  Everything else is a detail.
« Last Edit: July 28, 2015, 12:38:41 PM by Simon Dog » Logged
LisaBart
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« Reply #13 on: July 30, 2015, 03:57:46 AM »

My husband started his home dialysis only 2 weeks ago....it's only 11 months since he started his dialysis at a renal unit and I never ever thought he would needle himself!! He relies on me for so much....but it's his life and he had to learn to do it and he did...I am pretty proud of him actually...though we have been having a bit of trouble with alarms on the machine the last couple days....how awesome having a nurse come in to do it all....we had a nurse come once to make sure Alan could do it himself!
Medicare has supplied everything for us...and the renal unit is only 7 minutes away by car if we need support.
Encourage your husband to learn and then he can be home again.
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Vt Big Rig
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« Reply #14 on: July 30, 2015, 04:41:51 AM »

I started home hemo with Next Stage almost 4 months ago.  I think I knew I would have to learn to cannulate myself eventually.

But after much discussion with doc and training nurse we decided  to stay with sharps. My wife and care partner is adamantly opposed to me cannulating myself with the sharps. I mentioned this week again that I need to make an attempt and she will not think about it. Part of the reason is she is freaked out about possible damage to my fistula since we have had so much trouble with it. I help her pick a spot and line her up in the right direction and off we go. I have no complaints.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
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« Reply #15 on: July 30, 2015, 05:31:20 AM »

There is no reason you can't learn to self cannulate with sharps.  I use buttonholes, but they trained me on sharps as well.   I've used sharps a few times when the button hole was acting up (It's calmed down - haven't had to do that in months), and it was scary the first time I dis a sharp solo - but it worked.    A nice thing about doing your own sharp is you can catch an infiltration faster than someone else can since you have both feel and visual, rather than visual only.

Be sure to rotate sites and avoid "one site itis".
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