Is a partner REALLY necessary?

[Trikkechickk]

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.

[amanda100wilson]

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.

[KraigG]

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

[JohnJ]

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.

[Desert Dancer]

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.

[Bill Peckham]

wow a helicopter. I guess I'll go back incenter tomorrow.

[Desert Dancer]

wow a helicopter. I guess I'll go back incenter tomorrow.

 

[JohnJ]

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.

[Bill Peckham]

JohnJ it wouldn't matter if you reported being a nephrologist who flew the space shutle, your assertion is deeply misguided.

[amanda100wilson]

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 

[Meinuk]

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.

[JohnJ]

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.

[MooseMom]

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.

[Desert Dancer]

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.

[Meinuk]

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)

[Meinuk]

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.

[Meinuk]

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!

[MooseMom]

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, 

[amanda100wilson]

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.

[lmunchkin]

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
 

[JohnJ]

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?

[Desert Dancer]

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?

[JohnJ]

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.

[Desert Dancer]

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.

[JohnJ]

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.