Is a partner REALLY necessary?

[JohnJ]

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

Really? Would you care to tell us what clinic and which nurse ok'd you doing home hemo alone?

[cariad]

SHE said DaVita FIRST, then she said her clinic. So I started by asking DaVita about their policy..which is to HAVE A PARTNER. Don't worry....this will get back to her clinic as it should.

Meinuk is going to be reported to her dialysis clinic? That's a trick I'd like to see....
 

[MooseMom]

Jesus, JohnJ, what's the matter with you?  You have an attack for just about everyone, don't you?  Please leave us alone, OK?  You've got yourself sorted with your care partner and your three years of experience, so why are you so interested in what other people are doing?  If we choose to make a horrible mistake and put our lives in danger by wanting to do home hemo alone, shut up and let us get on with it.  I promise we won't hold you responsible for our fatal errors.

You're not worried about the effect of our mistakes on institutional statistics.  You're just being combative for the sake of it.  I seriously don't think you are in the least bit concerned for the well-being of Meinuk or Bill or any other human being, so please grant us permission to figure this out on our own.

Thank you.

Edited to add:  JohnJ, it might be really interesting if you were to ask your home dialysis nurse about this.  See, here's the problem (although I'm assuming you already know this...); the only place in the US for a patient to get optimal dialysis is at home.  Clinics just do not offer frequent dialysis, and only a handful offer true nocturnal.  So, that means that if you want to remain as healthy as possible on D, you have to treat yourself at home.  Now, what happens to those people who are otherwise good candidates for home hemo yet do not have a care partner?  Is it fair or even ethical to deny them the best treatment available simply because of their lack of a partner (assuming they would WANT to do home hemo?)?  I'm sure most patients would like to have a partner, but not everyone is so lucky, and to compound their bad luck by refusing them access to optimal dialysis just doesn't seem right.

It just seems to me that with all the fancy, flashy communication devices we have at our disposal these days, communicating an emergency is easier than ever.  Clinics should allow the well informed, well trained patient to assume whatever risk he/she desires.  Otherwise you are letting corporate policy dictate your heath care choices, and I can't imagine you'd really want THAT.

[Meinuk]

Ok, this is what you do to file a grievance about me.

John, you can call the ESRD network covering my state. (NY) and the department of health in my state (NY)

My name is Anna Bennett and I was a patient at Life Care dialysis in NYC under. The care of Dr. Walter wasser.  You john j feel that in your professional opinion as a flight medic (ret) anna bennett is a nut, and should never have been allowed to self dialyize alone at home. (For evidence, you can give them the news paper article and training diary linked below)

Thanks john for your concern, and don't worry, medicare, the network and the department of health will be able to track me down. (I'm pretty easy to find)

[JohnJ]

Jesus, JohnJ, what's the matter with you?  You have an attack for just about everyone, don't you?  Please leave us alone, OK?  You've got yourself sorted with your care partner and your three years of experience, so why are you so interested in what other people are doing?  If we choose to make a horrible mistake and put our lives in danger by wanting to do home hemo alone, shut up and let us get on with it.  I promise we won't hold you responsible for our fatal errors.

You're not worried about the effect of our mistakes on institutional statistics.  You're just being combative for the sake of it.  I seriously don't think you are in the least bit concerned for the well-being of Meinuk or Bill or any other human being, so please grant us permission to figure this out on our own.

Thank you.

Nope..you're wrong. I'm not being combative..I'm simply trying to get the FACTS out here and not someone's conjecture. If it's ok with a clinic then fine. But if it's not it's not fair to that clinic for someone to be spreading lies in a forum like this. This place should be full of FACTS and not lies. I'm simply trying to get to the truth. Do you have a problem with the truth?

Edited to add:  JohnJ, it might be really interesting if you were to ask your home dialysis nurse about this.  See, here's the problem (although I'm assuming you already know this...); the only place in the US for a patient to get optimal dialysis is at home.  Clinics just do not offer frequent dialysis, and only a handful offer true nocturnal.  So, that means that if you want to remain as healthy as possible on D, you have to treat yourself at home.

Agreed. I was in clinic for 6 months and hated it and I wasn't healthy at all.

Now, what happens to those people who are otherwise good candidates for home hemo yet do not have a care partner?  Is it fair or even ethical to deny them the best treatment available simply because of their lack of a partner (assuming they would WANT to do home hemo?)?  I'm sure most patients would like to have a partner, but not everyone is so lucky, and to compound their bad luck by refusing them access to optimal dialysis just doesn't seem right.

Is if fair or ethical for someone to tell their clinic they have a helper when they don't? Is it fair for a patient to spread lies about a company (DaVita) or a clinic? Is it fair for someone to spread lies in a group that is here to help others? How will that clinic's nurse's feel if a patient dies ALONE at home?

It just seems to me that with all the fancy, flashy communication devices we have at our disposal these days, communicating an emergency is easier than ever.  Clinics should allow the well informed, well trained patient to assume whatever risk he/she desires.  Otherwise you are letting corporate policy dictate your heath care choices, and I can't imagine you'd really want THAT.

We ALL agreed to abide by our clinics when we signed on. Yes, it's right to allow a patient to accept risks WITHIN THE CONFINES of the agreement with the clinic. If the clinic say that under NO circumstances is it acceptable for a patient to dialyze on their own then THOSE ARE THE RULES and you have to live by them. Don't like it? Then change it.

[JohnJ]

Ok, this is what you do to file a grievance about me.

Huh? Who said anything about filing a grievance? What the hell are you talking about?

John, you can call the ESRD network covering my state. (NY) and the department of health in my state (NY)

My name is Anna Bennett and I was a patient at Life Care dialysis in NYC under. The care of Dr. Walter wasser.  You john j feel that in your professional opinion as a flight medic (ret) anna bennett is a nut, and should never have been allowed to self dialyize alone at home. (For evidence, you can give them the news paper article and training diary linked below)

Thanks john for your concern, and don't worry, medicare, the network and the department of health will be able to track me down. (I'm pretty easy to find)

All I asked was..does your clinic owner (DaVita) and nurse know that you dialyze by yourself. It is a simply question.

[Meinuk]

Ok, this is what you do to file a grievance about me.

Huh? Who said anything about filing a grievance? What the hell are you talking about?

John, you can call the ESRD network covering my state. (NY) and the department of health in my state (NY)

My name is Anna Bennett and I was a patient at Life Care dialysis in NYC under. The care of Dr. Walter wasser.  You john j feel that in your professional opinion as a flight medic (ret) anna bennett is a nut, and should never have been allowed to self dialyize alone at home. (For evidence, you can give them the news paper article and training diary linked below)

Thanks john for your concern, and don't worry, medicare, the network and the department of health will be able to track me down. (I'm pretty easy to find)

John, this is SUCH old news. Read my training diary. Yes, everyone knew that I was alone. It went national when life care closed and I ws transferred to a clic that said no. I dialyized without a cllinic for over a month and then had my choice of four in NY state that would support me alone. I went to a davita clinic ALONE and then had a successful transplant. Once upon a time it was pretty big news.

I just saw my trainig nurse last november. We're friends, and she knew I was alone. And I just saw my NP from my second davita clinic last week at the dog park. They both knew I was alone.

[Meinuk]

Wow! I just got a PM from John saying that he understands why I don't have a partner. (I'll cut and paste it when I am at a computer)

You have just been sent a personal message by JohnJ on I Hate Dialysis Message
Board.

IMPORTANT: Remember, this is just a notification. Please do not reply to this
email.

The message they sent you was:

And I understand why you don't have a partner.

Reply to this Personal Message here:

[/size]

Phew,  and I just thought it was because I'm fat.  Sheesh...it is a good thing that this isn't a dating site!

(edited because I finally had the chance to cut and paste it)

[cariad]

Wow! I just got a PM from John saying that he understands why I don't have a partner.

How very classy!

Phew, it is a good thing that this isn't a dating site!

And here I was holding out hope for an invitation to an IHD wedding....

[Meinuk]

 We had an IHD wedding! It was awesome, I cried. Sluff & Mrs Sluff in an elvis chapel the first vegas trip.

Cara, I'm more of a "live in sin" kinda gal...

[JohnJ]

Wow! I just got a PM from John saying that he understands why I don't have a partner. (I'll cut and paste it when I am at a computer)

Phew,  and I just thought it was because I'm fat.  Sheesh...it is a good thing that this isn't a dating site!

AHHAH Who cares if you're fat? Sounds like you're projecting your personal problems onto others.

No..it has nothing to do with your weight.

From your posts I couldn't tell if you were still a patient or not.

But it was still interesting to hear from DaVita that company policy dictates that you have a partner. I would have been very surprised if they said otherwise.

[Meinuk]

My signature line is pretty comprhensive John. If you can't tell if I am currently on dialyis or not you're not looking too closely @ my posts.

[Desert Dancer]

He's a concern troll, y'all. May I suggest we ignore him? He can't keep the argument going himself and he's not worth the effort. Close-minded know-it-alls rarely are.

[cariad]

He's a concern troll, y'all. May I suggest we ignore him?

I was thinking the same thing.

Cara, I'm more of a "live in sin" kinda gal...

Rule-breaker! Rule-breaker! I am so telling your clinic....

[MooseMom]

My wife went through the training from day one. I do the stick and she tapes me down. Then she's gone until it's time to pull the needles. She pulls although I have practiced pulling my own needles.

Well, this is the kind of thing I'd like to ask you about.  Does she help you set up the machine or break it down afterwards, or is needle pulling all she does?  If that's all she does, that's great...that's about all I'd want anyone to help me with unless I was able to grow a couple of extra hands.  Do you still practice pulling your own needles?  Have you succeeded on doing it alone?

I'm sorry...I am not clear if you've been on D for 3 years or have been on NxStage for 3 years (to check, I'd have to look at your previous posts on this thread and thereby lose what I've already typed, and I'm to lazy to do that!).  Let's say you've been doing NxStage for 3 years.  This might be a silly question, but does your wife ever take any kind of refresher course for what to do in an emergency?  If you were to have trouble tomorrow on your run and were unconscious, are you and she both pretty certain she'd remember what to do?

Have you ever been in situation where she has not been available for your run, ie, been sick or out of town or something?  What do you do in those circumstances?  Do you think you could dialyze alone for a day or two if you had to?  Or would you have to go inclinic if your wife were indisposed?

Thanks for your replies!

[cattlekid]

I'm not JohnJ, but I am in the same situation that he is in.  I set up my machine and stick myself.  My husband tapes down my needles then he's on his own devices while I do my treatment.  Most times, he's within shouting distance but there are times he does go for a nap, at which time I have my phone next to me as does he. 

As far as a refresher, I had to do a yearly refresher last month on emergency procedures, including what to do in case terrorists invade Casa de Cattlekid.     DH did not have to sign off on this refresher, although it's only been three months since we've been home.

If DH is not going to be home, we use that as our day off.  This summer, he may be going on a vacation or two without me.  If that's the case, then I have been told that I can come back to my training clinic for a day here or there with notice, where I would still be dialyzing with NxStage.  I would never go back to a regular clinic if at all possible, I had to do a treatment last week with the old Fresenius machine and I don't miss that old washed out feeling at all.  If worse comes to worse, I can have a friend come over and sit with me while I do my treatment.  A good friend is an RN and said that she would help me out whenever she is needed.

My wife went through the training from day one. I do the stick and she tapes me down. Then she's gone until it's time to pull the needles. She pulls although I have practiced pulling my own needles.

Well, this is the kind of thing I'd like to ask you about.  Does she help you set up the machine or break it down afterwards, or is needle pulling all she does?  If that's all she does, that's great...that's about all I'd want anyone to help me with unless I was able to grow a couple of extra hands.  Do you still practice pulling your own needles?  Have you succeeded on doing it alone?

I'm sorry...I am not clear if you've been on D for 3 years or have been on NxStage for 3 years (to check, I'd have to look at your previous posts on this thread and thereby lose what I've already typed, and I'm to lazy to do that!).  Let's say you've been doing NxStage for 3 years.  This might be a silly question, but does your wife ever take any kind of refresher course for what to do in an emergency?  If you were to have trouble tomorrow on your run and were unconscious, are you and she both pretty certain she'd remember what to do?

Have you ever been in situation where she has not been available for your run, ie, been sick or out of town or something?  What do you do in those circumstances?  Do you think you could dialyze alone for a day or two if you had to?  Or would you have to go inclinic if your wife were indisposed?

Thanks for your replies!

[JohnJ]

My signature line is pretty comprhensive John. If you can't tell if I am currently on dialyis or not you're not looking too closely @ my posts.

You're POSTS didn't say "WHEN" I was on dialysis.

No, I never read your signature line but I understand why you feel the need to add all that.

And no, I've never spat at the computer because of you. Again, you're projecting YOUR problems onto others.

[MooseMom]

As far as a refresher, I had to do a yearly refresher last month on emergency procedures, including what to do in case terrorists invade Casa de Cattlekid.   

You know, I honestly don't know if you are kidding or not.  LOL!

Anyway, thanks for that info.  I don't have anyone who could take my husband's place for a day if necessary, so this is something I would have to consider.

[cattlekid]

Fortunately or unfortunately, I am not kidding.  In Illinois, I can see the info about tornadoes being useful.  Terrorists, not so much.  The nurse just gave me a bunch of stuff she printed off the FEMA website.

As far as a refresher, I had to do a yearly refresher last month on emergency procedures, including what to do in case terrorists invade Casa de Cattlekid.   

You know, I honestly don't know if you are kidding or not.  LOL!

Anyway, thanks for that info.  I don't have anyone who could take my husband's place for a day if necessary, so this is something I would have to consider.

[Bill Peckham]

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

Really? Would you care to tell us what clinic and which nurse ok'd you doing home hemo alone?

oh no!  You're not going to tell are you?

http://youtu.be/t6NN6M1bhNc

[Bill Peckham]

I fixed the above link using a work computer. 

[MooseMom]

I am a real fan of Dr Agar over on Home Dialysis Central; he knows just about everything there is to know about dialysis, particularly home dialysis, and practicing in Australia, I thought surely he must have patients who dialyze alone....all of that Outback country over there, you know.  So I asked him what they do in Australia for patients who want to dialyze at home, alone, and here is a link to that discussion...


http://forums.homedialysis.org/threads/3323-Doing-home-hemo-alone-in-the-US?p=22121

Geez, don't let him keep believing that Americans are weenies!  LOL!

[JohnJ]

I am a real fan of Dr Agar over on Home Dialysis Central; he knows just about everything there is to know about dialysis, particularly home dialysis, and practicing in Australia, I thought surely he must have patients who dialyze alone....all of that Outback country over there, you know.  So I asked him what they do in Australia for patients who want to dialyze at home, alone, and here is a link to that discussion...


http://forums.homedialysis.org/threads/3323-Doing-home-hemo-alone-in-the-US?p=22121

Geez, don't let him keep believing that Americans are weenies!  LOL!

This isn't Australia, is it?

[cariad]

I am a real fan of Dr Agar over on Home Dialysis Central; he knows just about everything there is to know about dialysis, particularly home dialysis, and practicing in Australia, I thought surely he must have patients who dialyze alone....all of that Outback country over there, you know.  So I asked him what they do in Australia for patients who want to dialyze at home, alone, and here is a link to that discussion...


http://forums.homedialysis.org/threads/3323-Doing-home-hemo-alone-in-the-US?p=22121

Geez, don't let him keep believing that Americans are weenies!  LOL!

That man is nothing if not thorough in his responses!

He certainly has Americans pegged. (She says with a certain measure of despair....)

[amanda100wilson]

This isn't Australia, is it?

What is the relevance of this comment?  Your point when you started this was, that it is not safe for someone to dialyse at home, so are you saying that Australians are more capable of dialysing at home than people in the US?  They don't bleed?  What is the point that you are trying to make from this comment?

Don't you think that it is time to let this go?  You have made your views abundently clear.  Anyone coming to IHD seeking advice will be able to weigh your views against what others have said, and be able to make their own informed choice about how they want to dialyse.