I think the language of dialysis is important. It warmed my heart to see the word dialyzor in the most recent HDC update. I’ve been selling the term “Dialyzor” in person too. Beachy your Dr. Agar is here in Seattle. I cornered Dr. Agar at an NKC function last week and pitched dialyzor as an alternative to patient. I think he liked it – we talked about its one linguistic drawback, it sounds too much like dialyzer – but I’d rather keep dialyzor and call them artificial kidneys.
I think we need new language to describe what is available in the way of home hemo and all the combinations of time and frequency. I do at times dialyze seven or more days. I think my personal best is 12 days in a row which would be true daily but is five days a week daily? We’ve had threads discussing the run lengths implied by various descriptors. Can “short” be three hours? Is six hour dialysis at night “nocturnal”? If you ran from noon to 7PM and then worked graveyard are you still on nocturnal?
Okay thinking out loud here… Flexible Home Dialysis? Or I like: High Target Dialysis. As in, a high target HDP. I look forward to the day when I can say “I target 100” and people will appreciate the meaning. We’d have Grossors: people who targeted 144. Pierre you’d be a “Double Grossor” with a 288 target. Or how about a “Lincoln”, someone who targets 87 – four score and seven. When you saw someone who looked uremic you’d say “There goes a 27”.
Bill, glad you cornered the good doc! Maybe he can pack you in his suitcase and bring you over to Oz to do a few talkfests with him here. You could feature as “The Well Travelled Dialysta Show”. The Oz dialysing public could do with a bit of a shake up as far as getting some of these little portable machines out here so we all don’t feel so trapped. At the moment booking in for “holiday dialysis” in Public hospitals is getting almost impossible due to the explosion in patient numbers and overseas travel takes a serious amount of money , so the only answer I can see is to let the little machines in SOON.
As for terminology I think I am a “bitser dialysta” (a bit of this and a bit of that). Never was much good at sticking to routines. :roll:
I’d rather be called Gus, but in terms of generallly speaking about us as a whole in scientific and medical community or journals I don’t care whether they use the word dialysis patients, esrd, or even kidney disease…
…but when I am face to face with them I just want to be called Mr. Gus …
I think language is important. When I am in the doctor’s office, the dialysis unit or hospital then I think the term “patient” is appropriate. However, the vast majority of the time I am not in a medical place of business. This, I believe, is the fundamental issue: the word ‘patient’ indicates a business relationship.
The other terms that have been suggested – client, consumer, customer – all highlight that what is being described is a business relationship. I think the problem many people have with the term ‘patient’ is that it is already defined in the acute model. In a chronic model the term ‘patient’ fails to acknowledge the 90% of the time that the individual is solely responsible for his or her care.
Dialyzor, as new word, allows us to define what it means. I suggest: a dialyzor is one who must accommodate a diminished renal function through dialysis and dialysis compatible living choices including diet, medications and exercise.
As important, language-wise, will be to get away from descriptors of the various home modalities that are limiting - nocturnal, daily, short – all come up short of accurately describing the entire continuum of healthy renal replacement options. High Target Home Hemodialysis besides being literally true also puts control where it belongs, in the hands of the dialyzor. The dialyzor and the Doc set the target; the dialyzor figures out how to get there.
I agree that should I have the opportunity to talk to you in person I would prefer to call you by your name but I doubt people are calling you Mr. Patient.
Rather they are likely saying “Mr. Gus as a dialysis patient you need to watch your fluid intake; cut back on the keggers.”
I think it would be more accurate to say “Mr. Gus dialyzors need to watch their fluid and not go to nightly keggers.“
As far as your fear of robot association there is a book available
Gus you seem to have been at this a long time. Tell me is the Nxstage as easy as it looks to use and take on vacation?
I’m still in center but waiting for my center to get the Nxstage for me. They say they have already applied for the permit from the state a while ago but are still waiting for it.
I really am looking forward to doing my dialysis at home.
Do you need much space, I am limitted on space so that is probably my biggest concern.
How is the term dialyzor going a year and a half on? Is there any more acceptance or have you found another term that is better?
We don’t use too many z words here in oz other than oz, we use ’ s’ in most cases where you guys use ‘z’
On the other topic of time /frequency which i am looking at with renewed interest as i am doing short daily for a while due to broken arm. Where does the blood pump speed come into this now? I am not happy to increase my pump speed much over 300 on the Freni but by my calculation things are looking better than they were on 3 nocturnals and a short each week. Have I missed something?
How is the term dialyzor going a year and a half on? Is there any more acceptance or have you found another term that is better?
We don’t use too many z words here in oz other than oz, we use ’ s’ in most cases where you guys use ‘z’
On the other topic of time /frequency which i am looking at with renewed interest as i am doing short daily for a while due to broken arm. Where does the blood pump speed come into this now? I am not happy to increase my pump speed much over 300 on the Freni but by my calculation things are looking better than they were on 3 nocturnals and a short each week. Have I missed something?
Cheers[/quote]
I was at a CMS meeting at the end of last week - Jim Curtis gave a PowerPoint presentation and used dialyzor instead of patient. I’m not sure if anyone knew what he was talking about - other than three of us. Dori and Erich were there so at least three people knew what he was saying. Some docs want the word dialyzer (they may spell it “-or”, I’m not sure) to mean a doc who understands dialysis. I’m in favor of docs understanding dialysis but their need for a term is less compelling than our need. We need a way to describe ourselves other than by our economic relationships; in terms other than business terms.
beachy - what do you mean “by my calculation things are looking better than they were on 3 nocturnals and a short each week”? What’s your schedule been since the accident? I’m kinda behind in the discussion - a three day trip takes about a week out of me.
[QUOTE=Bill Peckham;15175]
beachy - what do you mean “by my calculation things are looking better than they were on 3 nocturnals and a short each week”? What’s your schedule been since the accident? I’m kinda behind in the discussion - a three day trip takes about a week out of me.[/QUOTE]
Bill, at the moment I am trialling short daily as my arm is too painful to do long runs. So I am trying to work out if I can manage about 2 3/4 hours every day how my stats look compare to 3x8 hours + 1x 41/2 and wondering how the blood flow rate comes into play?
Cheers
I don’t care what they call me.
As long as they don’t forget to call me for dinner. .HE He he…
Could not pass up the opportunity…
Loosen up folks
Patients or Dializors???
What happens to those doing PD?..
They do not use a dializer. But they do get their blood cleaned and excess fluid removed.
So when you reference people that have end stage renal disease. What is the best noun to use??? ESRD patients or ESRD dializors.
ESRD patients sounds like the correct term as it describes the disease and people on dialysis weither Hemo or PD.
To keep this discussion alive I can say without reservation that i absolutely hate the idea of being called ‘end sstage’ anything! Even ‘patient’ is better than that and ‘consumer’ is miles ahead.
If I’m a NxStage user, does that mean I have ENRD instead of ESRD? Hmm, I’ve got to think about that. ENRD, ENRD, oh my gosh, that almost sounds like “a nerd”. I think I’ll go back to ESRD! I never thought I wanted End Stage Renal Disease, but it sure sounds better that some other possibilities.
Regarding dialyzors, dialyzers. dialysis patients, or whatever; how much difference does it really make? We’re all in the same boat anyways. I know my dear friend, Bill, uses “dialyzors”, but what’s the difference betweens “o’s” and “e’s”? Maybe we should just be known as “doers”. After all, we all “do” dialysis, whether HD or PD.
