I am thrilled at this discussion … its been a useful exercise to get a view of feelings and aspirations - even if it is only those of the committed few. You are among the thought-leaders in the patient field and it has been a really useful snapshot for me. I still hope more may chance a toe in the water here - so dont close off the responses just 'cos I have said this … but again, thanks.
John
I didn’t reply earlier because it was going to be just so uch work to respond as I would like. But Bob more or less put it in a way I would have. The problem with having so many items to list is that some are part of the same category.
For example, true light weight machine and moving from room to room, place to place are similar but I understand not the same. And now the question for us in U.S. is whether NxStage is truly light weight. Obviously not, but good enough? Well, until a lighter, more portable machine is available, it’s the best we have in that category. It has afforded many of us the ability to travel without having to find an opening st a center near to our destination. It also means we can still dialyze when we want. So is NxStage the perfect answer? No, but I don’t think we should be all greedy now as it’s the best we have and I’m sure more companies are working on others as we speak.
The best biochemistry or adequate biochemistry: is this a trick question. Of course I want the best, but is this question related to length of treatment? If John is trying to steer us to nocturnal. as I suspect he is, then any quality machine you have at home should allow this. As home patients we should have the flexibility to do any daily modality we desire, and with the agreement and support from our clinics should be able to devise a personal schedule that may even include mixed modalities.
Self-dialysis with self control or dependant upon a caregiver:to me it’s one or the other. For me it’s self-dialysis. I don’t want to depend on anybody else, nor do I want to disrupt anybody else’s life. My wife ostensibly is my caregiver. She signed the papers required by NxStage for me to participate. Does she help me? From time to time her help has been absolutely necessary, but generally, I do my treatments myself from start to finish sans assistance. In some respects this might be more iportant to me that the best possible therapy. I’ve learned through my years that everything is reletive and you can’t have the best of everything. So I would sacrifice some therapy in order to make my wife’s life a little easier. She has already sacrificed so much for me to do HHD in the first place. How selfish can I be?
Home visits, better internet Q&A are’t exactly the same but still are in the same category. Home visits are totally unnecessary in my case. In fact, visiting the clinic is usually the only time per month that I can actually weigh myself on a scale I trust. Better internet Q&A with doc/professional. Of course, aren’t I here. But BillP is also correct that there needs to be life outside of dialysis. If we’re just going to live and breathe dialysis, then doing HHD has become self-defeating. The idea is to dialyze to live and not live to dialyze.
Speed and ease to set up and teardown: It can’t be any easier than plpping in a cartridge and pressing a button. Could some of the setup on NxStage be streamlined a little more with better programming? Sur, but I’m not going to quibble.
Double headed needle is so far down on my list I hardly remembered to comment. As long as my AVF isn’t damaged by the extra stick per day then I don’t mind doing it.
I obviously would like to see improvement in all of the categories. but also am so grateful for what I have that I question whether I should be so bold as to say right now. I would like to see more interactivity with other technologies. I would like to see better dialyzers that can filter different sized solutes more efficiently so some wouldn’t be time based. It would be great to get the benefit of nocturnal dialysis in the time one spends doing SDD. I would like to see more transplantas done, either with other human kidneys, animal or artificial. I would like to see regenerated kidneys from stem cell research. And I would like to see peace on earth. Oh now I’m sounding like a beauty queen!
The questions are:
If you have one other view/preference/demand … what would it be?
Patient Education
Richard C/O Jessie
John it would be interesting to see how you rate your own list, as a doc what is most important to you? Perhaps you could send your list via email to a few colleagues and ask their opinion - then strip their name from the answers and post a summary here. I would think Kjellstrand would be the sort who would participate publicly but there is always the time constraint.
My guess is that the docs would have a somewhat different take …let’s see your version, sauce for the gander and all. cheers, billp
Interesting proposition, but if collegues are also included there should be a cross section of professionals. If all are from Oz, then the answers may be more skewed in one direction over another. Also, the list should be trimmed from the 15 options since I believe some are very close to others.
Feel free to start your own post Rich, with whatever constraints you wish 
I believe Dr. Agar’s circle extends beyond Oz. In any case there should be no wagering.
Bill
Having just staggered in from flying that damn ocean - I will take you up on it … but in a day of so when I am thinking straight again.
[quote=nocturnaldialysis;14818]If you had to rate these questions in order of importance to you … 1 to 15 … with 1 being the most important and 15 being the least important - what would you answer?
And, if you had ONE other demand, wish, hope, expectation, need … what, in one sentence, would that be?
And though you KNOW I favour long, frequent, slow overnight dialysis, dont humour me!
John Agar
www.nocturnaldialysis.org
The questions are:
Adequate[ul]
[li]biochemistry[/li][li]The best biochemistry you could get[/li][li]True, easy, light-weight machine and consumable portability[/li][li]Moveability of machine/equipment, room to room, place to place[/li][li]Speed and simplicity to set up, get on and get off dialysis[/li][li]Overnight, long, during sleep dialysis[/li][li]Short, frequent, daytime dialysis[/li][li]The option of being able to choose a mixed regime … long, short, awake, asleep … all[/li][li]Efficient and effective single needle, not two needle dialysis[/li][li]Self dialysis with self control, independent of a carer[/li][li]Dialysis by and dependence on a trained carer at home[/li][li]Home visits by your renal team[/li][li]Reimbursement for all costs of home care[/li][li]Better, more available, real-time Q&A with accredited dialysis docs/nurses on the net[/li][li]Respite and/or holiday dialysis availability[/ul]If you have one other view/preference/demand … what would it be?[/li]
Maybe Dori has a better way of setting this out … if not, just copy and past and add your number to each - 1 to 15.[/quote]
There is a better way to do these questions, surveys…keeps answers confidential…I think Dori should have their web team setup a survey system…I’ve used a survey system on my blog site…works great…it supports multiple languages…
Anyway, sorry for late participation…
[ul]
[li]biochemistry=7[/li]> [li]The best biochemistry you could get=1[/li]> [li]True, easy, light-weight machine and consumable portability= 1[/li]> [li]Moveability of machine/equipment, room to room, place to place=1[/li]> [li]Speed and simplicity to set up, get on and get off dialysis=1[/li]> [li]Overnight, long, during sleep dialysis=7[/li]> [li]Short, frequent, daytime dialysis=1[/li]> [li]The option of being able to choose a mixed regime … long, short, awake, asleep … all=1[/li]> [li]Efficient and effective single needle, not two needle dialysis=7[/li]> [li]Self dialysis with self control, independent of a carer=1[/li]> [li]Dialysis by and dependence on a trained carer at home=3[/li]> [li]Home visits by your renal team=3[/li]> [li]Reimbursement for all costs of home care=1[/li]> [li]Better, more available, real-time Q&A with accredited dialysis docs/nurses on the net=7[/li]> [li]Respite and/or holiday dialysis availability=1[/ul][/li]
Gus
Are you sure you did that correctly. I would have thought you would have had the best biochemistry and short frequent dialysis at 1 not 15?? Did you maybe do it back to front? Forgive me if I am wrong.
Cheers
[quote=beachy;14884]Gus
Are you sure you did that correctly. I would have thought you would have had the best biochemistry and short frequent dialysis at 1 not 15?? Did you maybe do it back to front? Forgive me if I am wrong.
Cheers[/quote]
Oops, you have good eye! …
yep That organ of my body still works fine
[quote=nocturnaldialysis;14882]Bill
Having just staggered in from flying that damn ocean - I will take you up on it … but in a day of so when I am thinking straight again.[/quote]
Ah yes the ASN - it must have been an interesting gathering. Maybe Dori will start a thread reporting on the meeting.
If anyone wants to modify this for a second bite at the cherry - I ma more than happy. I posted it without thought - just wrote as the questions popped into my head - no editing or thinking … just things I thought I’d like to know about people’s opinions. And yes, the questions do overlap, I agree (looking back, with some embarrassment) though on the other hand, is that a bad thing. Life (and dialysis) isnt black or white, its grey, its overlap, its one bends to another, and what I wanted to know was things like … was the very best biochemistry important or only a ‘it’ll do’ approach to biochemistry while, for example speed and light weight machine etc etc … well, yes, there’s overlap there too but they aren’t quite the same question.
I am glad its stimulated the discussion it has … and, Bill, as I cant sleep yet (I am on San Fran time still) … my 15 is coming up.
John Agar
Here’s my picks …
John Agar
www.nocturnaldialysis.org
[QUOTE=nocturnaldialysis;14890]Here’s my picks …
John Agar
www.nocturnaldialysis.org[/QUOTE]
John;
So you see, I feel that until there is a better machine. NxStage System One is about the best you can get without getting a transplant. It is a very capable machine… Short daily, Nocturnal, to anything in between. In your home, hotel room, relative’s house, RV, on a boat… You name it; as long as you have the power source and supplies anything is possible. You have the option to run it to suit your life style. Is there anything out there that has been FDA approved that can replace NxStage???
HemoHelper
[QUOTE=HemoHelper;14856][QUOTE=Jane;14847]
Jane;
Guess we /my partner must be lucky in a sense that her neph/team are responsible for her being healthy and a survivor of 17+ years with end stage renal disease. We are also proactive on keeping her quality of life the best it can be… Yes; I too search the web for anything that could help improve her situatation; then discuss it with her neph/team and see if it would be something that could improve her quality of life.
You say that “One should not blindly follow any member of the team-they can be just as wrong as someone on the net” At least your team member is a professional licenced to practice medicine… But the net is the NET NO one needs to supply you with their credentials… Very dangereous… If you have a mediocre team, then with your constant input of questions as to how to get them to look at procedures that you have researched that could make your quality of life better does nothing then I suggest that you get help with a new neph/team. I also know that the majority of people that are on dialysis just don’t take the time to try to improve the quality of life for themselves… even their family members just dont take the initative to find a way to make it better for them.
HemoHelper[/QUOTE]
In answer to this, in each city I have lived in, because I have relocated several times work-related, I went and checked out the dialysis units. I always based my choice of a new unit on the appearance of the unit. The reason is, in each situation, there was only one half decent looking unit while all the rest were horrible. None of the cities had more than a few units to choose from and some had monopolies. So then, what does it say that a unit is half -decent looking? It says that the care will probably be half-decent- what you see is what you get. All the units I have been in have been mediocre. There are always one or two staff who give 100%, but everyone, patients and staff alike, walk on eggshells and true care is non-existant. There is no such thing as true care in units like this.
Now one thing I will give each neph I have had. Although none of them have been up to date, if I did all the leg-work and brought current info to them, they were willing to allow me to take the best direction for my care re medications and the like. I just can never get over how I have been put in this role over and over, because each neph has had no interest in being up to date. They didn’t even know what was going on with home txs. Yet when I told them my desire to go into home txs, they all piped up that if they were on dialysis that’s what they would do!
So, it has never been that I don’t want to find a better neph/unit, but that nothing better has been available to me. Therefor, I have had to search the net to fill in the blanks. You say that the net is dangerous because there is no way to check out if a person has valid credentials. I really don’t care about the credentials in the sense that I have been very let down by one neph after another who does have credentials. Don’t get me wrong- as I stated previously, I don’t blindly believe everything I read on the net, but neither do I blindly believe everything my neph or staff says as they have been wrong many times. I take each statement and thoroughly check it out. I have even contacted those on the net to see what their credentials are. If they are a bonifide proressional they are known by others and check out. But the main thing I look for no matter who I am dealing with, patients or professionals, are facts that show that what they are saying is accurate. And in so doing, I manage to get to the right conclusions for my care.
I am so glad for you and your partner that you’ve been fortunate to have care that you are happy with. I haven’t, unfortunately, and many other patients are in the same boat. That is why I say that if qualified professionals provided dialysis education to patients on this site, I would wholeheartedly avail myself of the help and support. Because I would say the thing that has held me back the most from flourishing as a patient, a home patient now, has been the mediocre care/education by nephs and staff. Next to the machine and equipment, I feel that accurate dialysis education and respectful care is the most important
components which allow one to succeed on dialysis.
Again … I am grateful for all the discussion here … its been fruitful, revealing and, though there has been a predictable spread of ‘answers’ to my questions, all have been thoughtfully given and gratefully received. It is always refreshing to have feedback and, even though the systems are so different, US to Oz, the ‘user’ threads remain intact in both countries. Here in Oz where dialysis is free, consumables are free, medical visits are free, home support is free, home installation is free, home therapies are incentivized by government and carer support is less emphasized versus patient self-care, home HD has flourished (despite that we could always do it better) while there in the US, it still seems that the $ rears its head at every turn. Though this infrastructural and service gulf seems, to me, huge, at the end of the day, the aspirations and needs from a patient perspective remain remarkably alike. I hope more discussion will emerge - I learn with every post - and I will (in due time) post some synopsis of views for discussion … till then, thank you so much for the insights you have given me - it provides a light on the horizon to tack towards, even though the passage may be difficult and the winds tricky.
John I am curious what is the home hemo and PD take up in Oz? Just to brag a bit, at NKC we’re now at 5% for home hemo (69 dialyzors/54 NxStage; 15 B Braun) and 9% for PD (118 dialyzors).
I do know the home dialysis take-up is higher down under; NKC’s numbers are I think good for the US. I’d be interested in the home hemo and PD numbers as a percent of dialyzors for all countries. Are any numbers available?