Is a partner REALLY necessary?

[JohnJ]

At this point I should say that I have practiced all parts of my treatment by myself. That includes getting on AND off the machine. I do that just in case something happens to my wife (or daughter) while I'm dialyzing...I want to know that I can take care of myself. I do this once a month. All my wife does (or my daughter) is tape the needles down...they can do that much better than I can. And they pull the needles..again..they have two hands and better control of the needle.

If I were to dialyze by myself simply because my wife couldn't be there...and I died...what happens to my wife? She would blame herself for the rest of her life. Is that fair. What about the legal responsibilities of the clinic and staff. Can I just going to ignore the trust the have put in me?  Can you?

Again, thank you Dr Laird for stepping in. At least the childish rants and insults have stopped. The fact that I was right from the beginning seems to have slipped their minds. Oh well...that's the way it goes.

[Meinuk]

I trained ALONE at a Davita Clinic.  Everyone was on board with me being alone, it was out in the open.  The only time that I ever had anyone with me during dialysis was when a reporter and photographer come to interview me and take pictures for a story that was set up by the PR department of either NxStage or DaVita (I cannot remember which.  At the time, DaVita was a large shareholder in NxStage).

When my clinic was closed, and I had to search for clinics that would take me, I had my pick of four clinics.  I chose a DaVita clinic for convenience.

It is all here on IHD. Just as EPOMAN chose to share his story, I chose to share mine.  In doing so, I HOPE that people will advocate for themselves, and be able to get the best possible dialysis that they can, no matter what their living situation.

[Bill Peckham]

Cite the law that makes lone dialysis illegal, provide the link.

Can you really not work out the risk of 3x week dialysis vs. 5+/week? How many times has your wife/daughter saved your life during treatment?

The Northwest Kidney Centers' HHD Department's phone number is 206-292-2558 ask them.

[amanda100wilson]

John, despite what Bill and Meinuk have repeatedly said, you still coninue to imply that they are acting against their dialysis units in doing solo dialysis.  Since their units are in support of them doing dialysis without a partner, why on Earth would they move to Australia?

I know who my respect lies with and it ain't with you.  Your wife must sure be a good and steadfast person and the patience of a saint.

[tyefly]

JohnJ.......   looks like to me  you need to have help.....  you said that your wife tapes the needles down and does a much better job than you could......  you also need help pulling needles.....   and that is ok too.....   I however did all my taping and did a great job.....  I also pulled my own needles   with   no    problems   and I only used one hand......just a little trick on how to do .....  no risk at all.....  LIke I said in my post....some people feel better having help and some people need help with some aspects of home dialysis....some people have better manual dexterity than others.....  Not a big deal....    If I have someone  like a care partner with me while I am setting up and getting hook up they still would not be doing anything..... no point in just having them tear tape or something.....  My clinic and my doctor knew very well that I was doing this all on my own..... I have even help others to learn to pull their own needles and look at other ways to tape down so they can safely sleep and feel safe about every thing....    There are clinics out there they make people believe that their care partner should never even leave the room.....not even for a bathroom break......  so many clinic's have so many different rules....some let you eat while others dont even want you to take a nap.....    It really does depend on your own comfort level and your own ability.....  I am not putting people down who have help with home dialysis..... I think its wonderfull that they have the help but I would like see more people who are in center be able to do home hemo and I feel that often clinics dont encourage people to go home.....  They often make it sound like it very hard to do and it will take two people full time  jobs to do dialysis at home.....  No I dont know as much as many.... I learned alot from IHD ,  Bill Peckham, Peter, along with many others ...  I do encourage Independence in all aspects of life..... 

[Desert Dancer]

I trained ALONE at a Davita Clinic.  Everyone was on board with me being alone, it was out in the open.

Meinuk, he is not interested in FACTS. He is not interested in PROOF. All he knows is that HE disagrees with it, therefore you and Bill must be sneaky liars who've kept your clinics in the dark. He's not followed one link provided. He's not watched one video provided. Hell, you even gave him your doctor's name so he could 'tell on you'; I wonder if he's called and had his ass handed to him. Somehow I doubt it.

All his fearful and authoritarian self is interested in is being RIGHT. Anything that contradicts his dearly held beliefs will be met with fingers in the ears, 'neener-neener-neener-I-can't-hear-you' and non-sequiturs about Australia. Thankfully I think his attitude and his lack of interest in facts is going to be more than readily apparent to anyone reading this thread in the future.

Please, please don't feed the trolls.

[SugarBear]

Hello all, after reading this extensive post I realized no one has mention "Virtual Partnering".  The center I go to allows me to do dialysis alone while a tech monitors my machine through the internet.  I have been doing nocturnal home hemo dialysis this way for almost six months now with no problems and the center has been doing it this way for a decade.  I have only heard of my center who does the "Virtual Partner", but there has to be others throughout the U.S.

Anyone here heard of something similar?

[willowtreewren]

Hi, SugarBear. I remember another IHD member mentioning the nocturnal monitoring. It seems like they were in the NorthEast somewhere.

On another topic, could you please go to introductions and post a regular intro?

 

Aleta

[Hemodoc]

In the end analysis, the fact that most states prohibit by legal statute dialysis at home alone is the biggest impediment to increasing the number of patients who could benefit and who would be capable of performing self care at home. That is the real target in my opinion.

Thank you Dr Laird for repeating that is is ILLEGAL to do it alone. As Dr Agar pointed out the reason is simply...lawyers. But the fact is that we agreed to abide by the terms set by our clinics and until the law changes we can't simply ignore them. If to many have problems caused by no one at home with you the entire home hemo program could be halted. Then what?

John, I believe you are misunderstanding my point. I don't believe it is inherantly dangerous for patients in Canada and Australia to do dialysis at home and somehow in America it is dangerous. We have a much different society where people sue at the drop of the hat. Doctors here live in a fishbowl.

Nevertheless, any prohibition against a qualified  patient capable of self care SHOULD by all means be allowed to go home and do self care alone. We have far too many examples of patients doing well. I know several personally. While I am thankful for my wife who does assist in certain chores, the majority of the treatment is mine. In fact, I am going to obtain a one hand tourniquette so that the entire start process is in my own hands. The only thing she does now is place the tourniquette since it requires two hands. Thankfully, they have one handed models that I am going to try soon.

I am a real gusher when the needles come out so that will be the biggest challenge I have doing the last portion, but I stick my needles and pull them myself. I don't consider this an obstacle difficult to overcome, just something at this point that my wife doesn't want me messing up her floors or God forbid, her ceilings.

In the end, any laws that prohibit single self care should be overturned. Any healthcare organization that prohibits single self care should be encouraged to change that opinion. The issue is one of stable dialysis patients vs the usual unstable in-center patients due to a number of factors not the least of which is high ultrafiltration rates. Self care at home is appropriate and it is an area we need to collectively move forward in securing.

[amanda100wilson]

Haemodoc, I have the tourniquet with the 'buckle' to loop it around and then it secures to itself with velcro.  I could only buy them in a large quantity, so if you want me to send you one, just pm me.

[SugarBear]

Hi, SugarBear. I remember another IHD member mentioning the nocturnal monitoring. It seems like they were in the NorthEast somewhere.

On another topic, could you please go to introductions and post a regular intro?

 

Aleta

Yes ma'am     

[fearless]

Amanda, and MooseMom,
I never thought about the discriminatory aspect of prohibiting lone dialysis.  I can imagine some poor soul, with no close family, no spouse to help.  On top of that life, ESRD, and now being restricted to in-clnic dialysis as a "punishment" for living alone. 

Yeah, there's yer lawsuit!  How unfair. 

You know what I'm really sick of?  Weeny docs who are simply not on their patient's side.  But I guess i have to forgive.  i know with the number of patients my doc is responsible for, I sincerely doubt he has time for advocating with regard to the rules that need to be changed.  Living in fear just like the rest of us who are dependent on the corporation for our survival.

I just wish more docs had the confidence to simply follow their conscience and always prescribe what's best for the patient, and not worry about the consequences (isn't righteousness defensible?)

[Hemodoc]

I added a post on this issue to my blog. It is an issue that other nations don't even debate. That discrepancy needs to be addressed.

http://www.hemodoc.com/2012/02/dialyzing-at-home-alone.html

[MooseMom]

Outstanding blog entry, Hemodoc, as usual!

Sugarbear, I have heard of "virtual partnering" but don't really know much about it.  I was thrilled to read in your intro about how you do nocturnal home hemo alone.  I LOVED reading your story.

Fearless, yeah, weenie doctors who place their anxieties above their patients' well-being.  But maybe people like you and SugarBear and Desert Dancer and Bill Peckham can gradually change their thinking. 

As for lone dialyzing being illegal, what, is there dialysis police?  Is this a misdemeanor?  A felony?  Can you be fined or imprisoned?  How do they know you are engaging is this illegal activity?  I've spent all day in bed with a stonking great cold, and I've been having lots of weird dreams about either Downton Abbey or the Dialysis Police.  It's been a very strange day.

[Hemodoc]

Outstanding blog entry, Hemodoc, as usual!

Sugarbear, I have heard of "virtual partnering" but don't really know much about it.  I was thrilled to read in your intro about how you do nocturnal home hemo alone.  I LOVED reading your story.

Fearless, yeah, weenie doctors who place their anxieties above their patients' well-being.  But maybe people like you and SugarBear and Desert Dancer and Bill Peckham can gradually change their thinking. 

As for lone dialyzing being illegal, what, is there dialysis police?  Is this a misdemeanor?  A felony?  Can you be fined or imprisoned?  How do they know you are engaging is this illegal activity?  I've spent all day in bed with a stonking great cold, and I've been having lots of weird dreams about either Downton Abbey or the Dialysis Police.  It's been a very strange day.

I would highly recommend you stay away from the Walking Dead until this passes. LOL

[fearless]

Hemodoc,
EXCELLENT blog post!

I'm going to give the address to my doc!
 

[tyefly]

When I first started Dialysis and trying to work with my insurance company to do home dilaysis  esp  nocturnal....  I was told by my insurance company that no one in the US does nocturnal.....  period...   with the exception of one clinic in my town here that does allow nocturnal with a baby K and that would be hooked up to a monitoring computer system where people ( I suppose nurses ) would monitor me thru out the night....requirements were that I still needed to do blood pressure every 1/2 hour and I had to be on the machine ready to do dialysis every night by 10pm and off at 6am.   NO exceptions....  I did not want to have to follow that time frame so I continured on short daily.....   I think the monitoring system is another good way for people to get more dialysis at home and feel safe.....  I just didnt like that I would have to do it on their schedule.......  But I like that there were options..... Now my insurance company is allowing some people to do nocturnal  but its still very limited..... its like a secret club.......LOL     

[willowtreewren]

I've been having lots of weird dreams about either Downton Abbey or the Dialysis Police.  It's been a very strange day.

MM, I laughed so hard over this...I'm having Downton Abbey withdrawal..... HELP!!!! 

[Hemodoc]

When I first started Dialysis and trying to work with my insurance company to do home dilaysis  esp  nocturnal....  I was told by my insurance company that no one in the US does nocturnal.....  period...   with the exception of one clinic in my town here that does allow nocturnal with a baby K and that would be hooked up to a monitoring computer system where people ( I suppose nurses ) would monitor me thru out the night....requirements were that I still needed to do blood pressure every 1/2 hour and I had to be on the machine ready to do dialysis every night by 10pm and off at 6am.   NO exceptions....  I did not want to have to follow that time frame so I continured on short daily.....   I think the monitoring system is another good way for people to get more dialysis at home and feel safe.....  I just didnt like that I would have to do it on their schedule.......  But I like that there were options..... Now my insurance company is allowing some people to do nocturnal  but its still very limited..... its like a secret club.......LOL   

Dear Tyefly, I am still considering selling the house in CA and getting a place near Portland to keep my Kaiser. That allows us to be close to Idaho as well that we have grown to truly enjoy but they don't have Kaiser there.

You will have to give me all of the information on who's who at Kaiser in Portland. Send me a PM when you have a chance. Nocturnal is slowly coming to Kaiser, but slow is the operative word. They keep waiting for the holy grail medical studies by RCT to justify utilizing this. Kaiser in S. CA has a nocturnal in-center program but only 4 patients to date. My nephrologist wishes to put people on the home nocturnal program but is hung up over the FDA approval of NxStage for nocturnal. Quite silly since NO dialysis machine has a nocturnal indication. The number of people killed by lack of access to these modalities because of red tape is stifling.

[tyefly]

Peter......  I will Pm you with the info.....  My Neph who is a Kaiser Doctor and also the Medical director for the clinic that I went thru to do home hemo...and pave the way for Nocturnal.....The clinic is now a Davita but is still working with everything that we doing before they took over DSI....  The clinic it self has a nocturnal in center program which just started a few months ago with 20 available stations....but I think they are only half filled.... My doctor and I worked very hard with Kaiser and the clinic to get the home nocturnal started .....and I am pleased to say they are continuing..... I believe you would do well to go thru this clinic....  I will send you a PM on everything....

I too have house in Vancouver, Wa   so I can continue with Kaiser.....  my other house at the beach   south of Lincoln city is where I truly live....but we must keep residency in the Kaiser zip codes...... and live there at least 6 months of the year.....OK    Idaho is very nice  esp  up north where you are interested.....  Plenty of good fishing up that way as well.... and of course lots of big trees.....  you dont get that down in southern Ca....but hey sunshine is a premium.....LOL   

I want to personally thank you for all the hard work you do providing so much information to all of us here and on your blog..... 

[Hemodoc]

Peter......  I will Pm you with the info.....  My Neph who is a Kaiser Doctor and also the Medical director for the clinic that I went thru to do home hemo...and pave the way for Nocturnal.....The clinic is now a Davita but is still working with everything that we doing before they took over DSI....  The clinic it self has a nocturnal in center program which just started a few months ago with 20 available stations....but I think they are only half filled.... My doctor and I worked very hard with Kaiser and the clinic to get the home nocturnal started .....and I am pleased to say they are continuing..... I believe you would do well to go thru this clinic....  I will send you a PM on everything....

I too have house in Vancouver, Wa   so I can continue with Kaiser.....  my other house at the beach   south of Lincoln city is where I truly live....but we must keep residency in the Kaiser zip codes...... and live there at least 6 months of the year.....OK    Idaho is very nice  esp  up north where you are interested.....  Plenty of good fishing up that way as well.... and of course lots of big trees.....  you dont get that down in southern Ca....but hey sunshine is a premium.....LOL   

I want to personally thank you for all the hard work you do providing so much information to all of us here and on your blog.....

Thanks Tyefly, we are planning on getting down to Portland at least once this summer to look around and see which areas we are interested in renting. Hopefully, I will be able to transfer all of my Kaiser coverage up to the Portland area and then use that as my home base like you do as well. The old medical director from Southern CA just retired here and is now the head of the medical group in Portland and apparently has big plans for Kaiser in that area from what I have heard. That will be good news for us if it comes to pass.

[SugarBear]

I added a post on this issue to my blog. It is an issue that other nations don't even debate. That discrepancy needs to be addressed.

http://www.hemodoc.com/2012/02/dialyzing-at-home-alone.html

Great article, very informative and well written.

[MooseMom]

Outstanding blog entry, Hemodoc, as usual!

Sugarbear, I have heard of "virtual partnering" but don't really know much about it.  I was thrilled to read in your intro about how you do nocturnal home hemo alone.  I LOVED reading your story.

Fearless, yeah, weenie doctors who place their anxieties above their patients' well-being.  But maybe people like you and SugarBear and Desert Dancer and Bill Peckham can gradually change their thinking. 

As for lone dialyzing being illegal, what, is there dialysis police?  Is this a misdemeanor?  A felony?  Can you be fined or imprisoned?  How do they know you are engaging is this illegal activity?  I've spent all day in bed with a stonking great cold, and I've been having lots of weird dreams about either Downton Abbey or the Dialysis Police.  It's been a very strange day.

I would highly recommend you stay away from the Walking Dead until this passes. LOL

Good idea.  Who knows what kind of dialysis nightmare THAT would induce!

Are you going to the conference in San Antonio?  If so, are you going to blog from there?

[Hemodoc]

Outstanding blog entry, Hemodoc, as usual!

Sugarbear, I have heard of "virtual partnering" but don't really know much about it.  I was thrilled to read in your intro about how you do nocturnal home hemo alone.  I LOVED reading your story.

Fearless, yeah, weenie doctors who place their anxieties above their patients' well-being.  But maybe people like you and SugarBear and Desert Dancer and Bill Peckham can gradually change their thinking. 

As for lone dialyzing being illegal, what, is there dialysis police?  Is this a misdemeanor?  A felony?  Can you be fined or imprisoned?  How do they know you are engaging is this illegal activity?  I've spent all day in bed with a stonking great cold, and I've been having lots of weird dreams about either Downton Abbey or the Dialysis Police.  It's been a very strange day.

I would highly recommend you stay away from the Walking Dead until this passes. LOL

Good idea.  Who knows what kind of dialysis nightmare THAT would induce!

Are you going to the conference in San Antonio?  If so, are you going to blog from there?

No, I was invited to speak for one of the vendors, but I declined. Rich Berkowitz is going, not sure about Bill but Rich doesn't do live blogging. Doesn't look like Dr. Agar does live blogging as well. Will be a quiet ADC compared to years before without Bill's live blogging.

[MooseMom]

Yeah, I just saw your post over at HDC. 

I was looking at the conference website and saw all of the speakers lined up to talk about home hemo.  I think it is a real shame that there won't be some sort of post-conference access to these speeches, or at least some distillation of the major points, for patients to look at.

I hope Bill will come on and let us know his plans.  Maybe he will be blogging.