Tell me what's important to you - rate 1-15

Discussions for Patients, Family, and Friends HD For Patients
1

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
[/li][/ul]
If you have one other view/preference/demand … what would it be?

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.

2

1 - The best biochemistry you could get
2 - Self dialysis with self control, independent of a carer
3 - The option of being able to choose a mixed regime … long, short, awake, asleep … all
4 - Speed and simplicity to set up, get on and get off dialysis
5 - Short, frequent, daytime dialysis
6 - Adequate biochemistry
7 - Overnight, long, during sleep dialysis
8 - True, easy, light-weight machine and consumable portability
9 - Moveability of machine/equipment, room to room, place to place
10 - Efficient and effective single needle, not two needle dialysis
10 - Dialysis by and dependence on a trained carer at home
10 - Home visits by your renal team
10 - Reimbursement for all costs of home care
10 - Better, more available, real-time Q&A with accredited dialysis docs/nurses on the net
10 - Respite and/or holiday dialysis availability

If you have one other view/preference/demand … what would it be? The most dialysis per minute of time (and high biocompatability).

3

Hi Prof. Agar!
I will give this a try although it is difficult to put them in exact order since some are almost tied in importance.

  1. *adequate biochemistry
    • The best biochemistry you could get
    • True, easy, light-weight machine and consumable portability
    • Moveability of machine/equipment, room to room, place to place
    • Speed and simplicity to set up, get on and get off dialysis
      3 ) *Overnight, long, during sleep dialysis
  6. *Short, frequent, daytime dialysis
    • The option of being able to choose a mixed regime … long, short, awake, asleep … all
    • Efficient and effective single needle, not two needle dialysis
    • Self dialysis with self control, independent of a carer
      14)* Dialysis by and dependence on a trained carer at home
      12)* Home visits by your renal team
    • Reimbursement for all costs of home care
    • Better, more available, real-time Q&A with accredited dialysis docs/nurses on the net
      11)* Respite and/or holiday dialysis availability

And as for my opinion on what would improve care- nephrologists/tx teams that operate in professionalism ( respect, patience, humanity, compassion), that know their stuff ( because they are truly educated and up to date) and who are not threatened by the necessity of educating patients at the teachable moment.

4

1]The best biochemistry you could get
2]Speed and simplicity to set up, get on and get off dialysis
3]The option of being able to choose a mixed regime … long, short, awake, asleep … all
4]Respite and/or holiday dialysis availability
5]Overnight, long, during sleep dialysis
6]True, easy, light-weight machine and consumable portability
7]Moveability of machine/equipment, room to room, place to place
8]Home visits by your renal team
9]Self dialysis with self control, independent of a carer
10]Efficient and effective single needle, not two needle dialysis
11]Short, frequent, daytime dialysis
12]Better, more available, real-time Q&A with accredited dialysis docs/nurses on the net
13]Reimbursement for all costs of home care
14]Dialysis by and dependence on a trained carer at home
15]Adequate biochemistry

If you have one other view/preference/demand … what would it be?

Compassionate , educated, committed renal staff in renal units that aren’t underfunded and understaffed,where standards for the training and resourcing of home dialysis consumers is second to none and equitable wherever you are across our great country, and …oh yes, lots of compassionate, committed nephrogists to keep pushing that envelope ;0)

5

1] The best biochemistry you could get
2 True, easy, light-weight machine and consumable portability
3 Efficient and effective single needle, not two needle dialysis
4 The option of being able to choose a mixed regime … long, short, awake, asleep … all
5 Move ability of machine/equipment, room to room, place to place
6 Short, frequent, daytime dialysis
7 Overnight, long, during sleep dialysis
8 Speed and simplicity to set up, get on and get off dialysis
9 Reimbursement for all costs of home care
10 Self dialysis with self control, independent of a career
11 Dialysis by and dependence on a trained career at home
12 Better, more available, real-time Q&A with accredited dialysis docs/nurses on the net
13 Home visits by your renal team
14 Respite and/or holiday dialysis availability
15 Adequate biochemistry

If you have one other view/preference/demand … what would it be?
Make hiring requirements for anyone working in a Dialysis Unit so all of the poor souls sitting there do not have to suffer. There needs to be requirements set instead of letting any dropout off of the street train for 2 weeks and then shove them off to stick needles into a patient and monitor them for a life saving treatment. The staff needs to be paid more and have more staff around instead of the ridiculous 1 nurse per 4-6 patient ratio. Finally find some kind of activity or give the patients some attention instead of wasting away in a chair for 3-4 hours and then waste away more while they are waiting for the transit for over an hour. ( dogs in a kennel receive more attention)

thanks,

6

1: The best biochemistry you could get
2: True, easy, light-weight machine and consumable portability
3: The option of being able to choose a mixed regime … long, short, awake, asleep … all
4: Self dialysis with self control, independent of a carer
5: Respite and/or holiday dialysis availability
…are my top 5. The others are fairly interchangeable for me.
I had 4, as I was a ‘lone’ dialyser - my wife did not train with me as a team, altho she was around
if I needed her.
My additional thing would be the easy availability of dialysis elsewhere, in campervans, houses or dialysis units for travelling home dx-ers. Which is just an extension of 5 I know.
Right now, my top priority is getting a working fistula & getting the last of permacaths out!!!
It’s been a year today…

7

Happy permacath birthday Bear ! Geez mate, I hope you get home or get a transplant soon…

8

Not too many months ago there would have been a dozen or more replies to questions such as those the Prof has posted . Come on I know you are out there! This is a man that is committed to our care and responsible for producing real change and progress for us all, wherever we are in the world.

is it that that nobody is interested, or that everybody is posting on the Nxstage forums these days or is it a case of “will the last home dialyzor to leave the building,please turn out the lights”!

9

Here’s my list:

  1. True, easy, light-weight machine and consumable portability
  2. Self dialysis with self control, independent of a carer
  3. Speed and simplicity to set up, get on and get off dialysis
  4. Overnight, long, during sleep dialysis
  5. Respite and/or holiday dialysis availability
  6. The best biochemistry you could get
  7. Reimbursement for all costs of home care
  8. biochemistry
  9. Moveability of machine/equipment, room to room, place to place
  10. Short, frequent, daytime dialysis
  11. The option of being able to choose a mixed regime … long, short, awake, asleep … all
  12. Efficient and effective single needle, not two needle dialysis
  13. Dialysis by and dependence on a trained carer at home
  14. Home visits by your renal team
  15. Better, more available, real-time Q&A with accredited dialysis docs/nurses on the net

One other thing - the ability to remove as much fluid as possible without the side effects like cramps, hypotension

10

[QUOTE=beachy;14832]Not too many months ago there would have been a dozen or more replies to questions such as those the Prof has posted . Come on I know you are out there! This is a man that is committed to our care and responsible for producing real change and progress for us all, wherever we are in the world.

is it that that nobody is interested, or that everybody is posting on the Nxstage forums these days or is it a case of “will the last home dialyzor to leave the building,please turn out the lights”![/QUOTE]

Only a small percentage of the kidney population actively participate on the boards. There is no telling how many read, but do not post. Some post once in awhile. With the availabilty of home txs now with NxStage a new group was formed, NxStage_Users, to provide more specific technical info and support. NxStage is supposedly nearing 2000 home patients now, nevertheless only a small percentage post to HDC or to the new board.

The net group that seems to have the largest membership is ihatedialysis.com. I am guessing the reason for it’s popularity is due to the fact that posters can discuss anything they want to say about their dialysis experience without being invalidated.

I am only aware of one net group that had a strong educational feature to it comprised of a board wherein a dialysis nurse replied to patient questions in close to real time. That site was the old dialysisethics.org. Over a 1400 educational questions were fielded by this lone nurse single handedly. I remember the board well, because I was one of the patients helped by that nurse.

It is my guess that there will never be a large percentage of patients who will get actively involved as far as posting to a kidney net board as it takes a certain type of individual who is proactive in his/her care… But the one downfall of most boards is there is no active participation on the part of the dialysis professionals as far as meeting the need of answering dialysis patients’ questions. Should this ever change, then I think participation would grow to some degree and be very meaningful for those patients who would choose to be involved. And certainly the dialysis professionals would realize a great reward in using their knowledge to improve the lives of patients.

11

[quote=beachy;14832]Not too many months ago there would have been a dozen or more replies to questions such as those the Prof has posted . Come on I know you are out there! This is a man that is committed to our care and responsible for producing real change and progress for us all, wherever we are in the world.

is it that that nobody is interested, or that everybody is posting on the Nxstage forums these days or is it a case of “will the last home dialyzor to leave the building,please turn out the lights”![/quote]

I’ve noticed too beachy. I think it could be a sign of health too - dialyzors pursuing other interests. Speaking for myself I spend more time on political blogs and H5N1 boards then I do on the renal boards (not to mention things like facebook and wikipedia).

I think these things run in cycles too.

12

Damn it, Bill, I answered you so eruditely but the damn thing times out (its done that before), and I lost the whole thing. I’ll have to type in Word, then copy in to avoid that if ever I try that again.

It was a bloody good answer too … but in brief - I tried - but ‘such is life’ as Ned Kelly said!

As for professionals on the site? … I am a lone voice there as I know most (?all) of my colleagues ‘disapprove’ or ‘disagree’ with me on this.

Sorry for the deleted and never to be read erudition!

And Bill … keep on being Bill!

John

13

1 The best biochemistry you could get
2 Self dialysis with self control, independent of a carer
3 Overnight, long, during sleep dialysis
4 True, easy, light-weight machine and consumable portability
5 Moveability of machine/equipment, room to room, place to place
6 Adequate biochemistry
7 The option of being able to choose a mixed regime … long, short, awake, asleep … all
8 Short, frequent, daytime dialysis
9 Speed and simplicity to set up, get on and get off dialysis
10 Reimbursement for all costs of home care
11 Home visits by your renal team
12 Better, more available, real-time Q&A with accredited dialysis docs/nurses on the net
13 Efficient and effective single needle, not two needle dialysis
14 Respite and/or holiday dialysis availability
15 Dialysis by and dependence on a trained carer at home

    One more thing I would add kind of goes along with #2, but I would like to see clinics that will ACTUALLY TRAIN people who are willing to dialyze without a partner. My grandmother is starting dialysis now and she would like to do NxStage like I am, but she lives alone. The only way she can do it is by hiring a nurse or a technician to come in and watch her. She's willing and able to self-dialyze, but no one will train her by herself.
14

John;

In your list of 15 items I think we are already getting the best dialysis available doing Nocturnal on a NxStage System One w/Pureflow. My partner has been on Nocturnal for about 7 years… Until there is another machine that is as portable as the System One, We could ask that it be smaller and not weigh as much… It’s ease of use and reliability is hard to beat… Blood work looks great…
“x” is what we already have doing nocturnal on the System One

“x” biochemistry
“x” The best biochemistry you could get
“x” True, easy, light-weight machine and consumable portability
“x” Moveability of machine/equipment, room to room, place to place
“x” Speed and simplicity to set up, get on and get off dialysis
“x” Overnight, long, during sleep dialysis
“x” Short, frequent, daytime dialysis
“x” The option of being able to choose a mixed regime … long, short, awake, asleep … all
“n/a” Efficient and effective single needle, not two needle dialysis (Use Cathater)
Self dialysis with self control, independent of a carer
Maybe an implanted kidney machine. A hepler is a must two minds work better than one when there is an emergency.
“x” Dialysis by and dependence on a trained carer at home
Home visits by your renal team
Monthly visit to center and Dr office is a must. They have medical equipment necessary. example you need a cardiogram
“x” Reimbursement for all costs of home care
Better, more available, real-time Q&A with accredited dialysis docs/nurses on the net
How hard is it for patients to contact their team if they had any questions pertaining to their health… it would be foolish to trust what you read over the NET.
“x” Respite and/or holiday dialysis availability

HemoHelper

15

[QUOTE=Bill Peckham;14839]I’ve noticed too beachy. I think it could be a sign of health too - dialyzors pursuing other interests. Speaking for myself I spend more time on political blogs and H5N1 boards then I do on the renal boards (not to mention things like facebook and wikipedia).

I think these things run in cycles too.[/QUOTE

I think the better the support and improved dialysis, the sooner one can return to other activities. When I was on 3x in-center, I still was able to live life fairly normally. So did other patients I knew. I was interested in improving my dialysis knowledge, however, so I frequented the boards. Most patients I knew never went on the net seeking dialysis knowledge. My unit had a support group once and few patients attended. They said they had other things to do like family events, fishing etc.Most said like they did not want to think about dialysis on their day off. None of the patients I am speaking of here went to home txs so I have no idea how their lives turned out. So there is this group of patients who don’t get involved in improving dialysis education.

Then there are those like yourself who are in units that are more progressive. I don’t know what percentage that would be, but I would think the more support, education and opportunity one has for improved dialysis, the better the progress and the sooner one can branch out in one’s life.

Now in my case, I’ve been in a number of units with the corporate mentality eventhough some of them were privately owned. I’ve had to fight every inch of the way for accurate dialysis knowledge, because my nephs/teama were not forthcoming with info. I had to get on the net to find the majority of what I’ve learned. I had to be the one to ask every neph I’ve had for a shot at home txs. I’ve only fairly recently gotten the opportunity to do 6x SDD. There are less ups and downs so feel better overall, but I’m not satisfied I have the best tx possible yet. So, I’m still on the net trying to understand what that means. The more technical knowledge I have of my machine ( I’m on NxStage), the more I am able to relax. I feel I must go to nocturnal txs if I am to get the maximum results. There are very few home patients on the net doing nocturnal txs. So, my search for dialysis knowledge on the net continues.

There have been numerous people who have helped me gain the dialysis knowledge I need. I in turn have helped many. Should I get the opportuinity to broaden my activities into other areas, I believe I will still be doing what I can to answer questions for those patients who are trying to get to the optimal tx. There will always be those who respond to the newbie questions. There are far less who are capable of answering the more advanced questions. This is where I’ve always felt that if the professionals would become involved on the net, patients like me could be spared excessive searching for info.

We are not all created equal in our dialysis experience. The more supported one is through accurate dialysis education and better dialysis, the faster one can resume one’s life more fully. I feel the net is greatly underutilized in this respect. Sure, there are plenty of kidney groups, but there is too much fluff and next to no support from the professionals. If every professional could contribute a portion of their time in the way Dori and Beth have, the boards could be revolutionized and real progress could be made for dialysis care. So, I welcome anything Prof. Agar can contribute and think it is a brave step on his part, especially since all his collegues resist anyone from their profession showiing support to patients on the net. I hope Pro. Agar can turn the tide as it is surely needed and would make such a difference in so many lives.

16

[QUOTE=HemoHelper;14843]John;
Better, more available, real-time Q&A with accredited dialysis docs/nurses on the net
How hard is it for patients to contact their team if they had any questions pertaining to their health… it would be foolish to trust what you read over the NET.
“x” Respite and/or holiday dialysis availability
HemoHelper[/QUOTE

Hemohelper,
I strongly respect most everything you post, but would disagree with this statement. It is not that patients don’t consult their teams, but that many times teams are not forthcoming with info or up to date. My belief is, irregardless of if I get info from my team or from someone on the net, I must double check it. I have had a number of teams and they have all given me inaccurate info at times and the majority were not up to date in their dialysis knowledge. One should not blindly follow any member of the team- they can be just as wrong as someone on the net. A true dialysis professional will give accurate info whether it is in person or on the net. And I have learned much from patients’ trial and error they post on the net, yours included. Or other patients may have top nephs/ teams whereas others of us have mediocre neph/teams. So info. can come from many different sources both in person or on the net.

17

HI Folks
I’m not going to rate these as most have a real value and I don’t want one if it means not the whole package.

biochemistry
The best biochemistry you could get If you mean the drugs in combo with dialysis time, then 3 days a week would be more than needed. As long as the consumer did not go out of their way to screw things up.If a person cares that much to take it home, then I take it that they would in time get the right combo of drugs and tx time.

True, easy, light-weight machine and consumable portability
Moveability of machine/equipment, room to room, place to place
Speed and simplicity to set up, get on and get off dialysis For now the nxstage with the pureflow, unless someone can correct me is all of these in one, with the exception of getting on and off. My idea of on and off will be better when someone comes up a combo of fistula /catheter.(I’m use a fistula , but would love a mini cath that feed into a fistula that made getting on and off as simple as a cath. the fistula has the bleed time after coming off where as the cath is clamp and go. )

Overnight, long, during sleep dialysis
Short, frequent, daytime dialysis
The option of being able to choose a mixed regime … long, short, awake, asleep … all In this area , I do have the option of doing what best fits the time I have. I do nocturnal and have really come to find it has helped a great deal with #'s, but most important to me is time. I get to do two things at once and have my work or leisure time to me. But if something comes up & I need to do something, I might change my time since I can. The bottom line is getting the tx.

Efficient and effective single needle, not two needle dialysis - I can’t comment on this since this has never been mentioned since I came into dialysis and I can’t recall if this topic was talked about on this board?

Self dialysis with self control, independent of a carer - I think this up to the person who is on dialysis.
Dialysis by and dependence on a trained carer at home - Are you talking about “trained carer at home” being someone outside the person’s family? (family being parent, spouse/ lover, grown child for parent)
Home visits by your renal team. As to home visits by your renal team, I would have the same problem I have now if this means the team came to my house once a month.( I really don’t see it , due to cost, remember Dr’s stopped making house calls yrs. ago) For the life of me I do not understand why in world I need to see the team once a month to have three people talk to me about my #'s. The only reason I have found is $$$., Don’t get me wrong if a person on dialysis wants to see there team that often then fine. But the cost should be out of their pocket. If a person needs to see the team that often then something might be wrong and maybe the team needs to stop at the house to see what is going on, that the person needs to see the team that often. Also I understand that there are people who have other problems that the team or at least a Dr. needs to see a person that often.

Reimbursement for all costs of home care
Better, more available, real-time Q&A with accredited dialysis docs/nurses on the net On cost, we have to pay something. If we could afford all the cost that goes into medical the system might not be so backwards. But since we only pay a % of the cost we really don’t demand the changes that are needed, since the cost is spread out to everyone. If we had to pay all the cost up front and only got a % back people would demand more real honest and upfront tx and answers. This also answers the real time Q and A on the net. If we knew that we were getting the truth from our Drs., nurse , etc, there would be no need to get real time Q and A from people who we had no real idea of what there motives are, if we are not getting what we need from our team , why would we trust someone who we don’t know and who doesn’t know us.

Respite and/or holiday dialysis availability I don’t understand. Do you mean being able to go a week without dialysis at all, like taking a holiday where we could forget machine etc? Only to to dream

If you have one other view/preference/demand … what would it be? That someday the know how to clone or create a generic organ that was had no need for tons of drugs and such. That if a person liver/ kidney etc were going bad they could get the old one taken out and a new put in, I even be happy with and artificial inplanted kindey.

As to why people may not be posting could that the some topic have been talked on, and some there is is no answer to , some are just going over the same thing, ($$$) plus we need more people to get into home hemo
Bob OBrien

18

Really interesting reading what others priorities are.

Bobeleanor
Quote Re [Respite and/or holiday dialysis availability I don’t understand. Do you mean being able to go a week without dialysis at all, like taking a holiday where we could forget machine etc? Only to to dream]

I notice most US respondents have listed respite /holiday dialysis as a low priority. I guess holidays are not such an issue for those on Nxstage anymore in the US.

Here in Australia, it is often difficult for a home patient who needs to spend a couple of sessions in hospital (respite) to have a break or relieve a carer, as most of our dialysis units are in public hospitals (the bulk of dialysis happens there, there aren’t very many private renal units over here).

Having said that, actually booking a holiday with dialysis in another renal unit here can be nearly impossible, except for the odd place in a major city or in a private hospital.

That is why I placed holiday and respite dialysis near the top of my list.

Cheers

19

[QUOTE=Jane;14847][QUOTE=HemoHelper;14843]John;
Better, more available, real-time Q&A with accredited dialysis docs/nurses on the net
How hard is it for patients to contact their team if they had any questions pertaining to their health… it would be foolish to trust what you read over the NET.
“x” Respite and/or holiday dialysis availability
HemoHelper[/QUOTE

Hemohelper,
I strongly respect most everything you post, but would disagree with this statement. It is not that patients don’t consult their teams, but that many times teams are not forthcoming with info or up to date. My belief is, irregardless of if I get info from my team or from someone on the net, I must double check it. I have had a number of teams and they have all given me inaccurate info at times and the majority were not up to date in their dialysis knowledge. One should not blindly follow any member of the team- they can be just as wrong as someone on the net. A true dialysis professional will give accurate info whether it is in person or on the net. And I have learned much from patients’ trial and error they post on the net, yours included. Or other patients may have top nephs/ teams whereas others of us have mediocre neph/teams. So info. can come from many different sources both in person or on the net.[/QUOTE]

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

20

Hey Beachy

Don’t misunderstand, as least for a holiday is very important. But my thinking on a true holiday would be not having to think about dialysis. We who are dialysis must always take that part of life with us. No matter what, we can’t really just get up and go somewhere. And it must be a real pain in the a_ _, if you don’t the use of a machine that you at least take with you, I guess I should be happy in that here those of us on nxstage can take it with us. In fact I just got back from a trip into mts. Hope that the same type of machine comes soon to you Folks.
Bob OBrien

                                                                                                                              [QUOTE=beachy;14855]Really interesting reading what others priorities are.

Bobeleanor
Quote Re [Respite and/or holiday dialysis availability I don’t understand. Do you mean being able to go a week without dialysis at all, like taking a holiday where we could forget machine etc? Only to to dream]

I notice most US respondents have listed respite /holiday dialysis as a low priority. I guess holidays are not such an issue for those on Nxstage anymore in the US.

Here in Australia, it is often difficult for a home patient who needs to spend a couple of sessions in hospital (respite) to have a break or relieve a carer, as most of our dialysis units are in public hospitals (the bulk of dialysis happens there, there aren’t very many private renal units over here).

Having said that, actually booking a holiday with dialysis in another renal unit here can be nearly impossible, except for the odd place in a major city or in a private hospital.

That is why I placed holiday and respite dialysis near the top of my list.

Cheers[/QUOTE]