I have wondered a number of times if it would be possible to invite other home patients and their home program nurse educators/doctors to particpate on the board. There are many more who could contribute to the education presented here if they knew about the board and how important their input is. Since there is a listing of all the home programs, maybe a letter could be sent out to invite participation? As many questions as have been answered about home programs, I venture to guess that many more could be answered if the whole home community took part on this board. Also, the dialysis corporations and machine companies could clarify questions patients have about how the various machines compare and how patients can know that they can be assured of good service should they elect to go into a home program.
Hi Jane,
We’re all in favor of the broadest possible participation in these Boards, which are the number 1 most visited part of Home Dialysis Centeral. A direct mail letter is a great idea. We just sent out sponsorship info for 2005-2006, and once we see what sort of support we have, we can plan to do things like full-color posters of the Home Dialysis Central postcard and direct mailings to clinics. So, if you use the products or services of any of our sponsors, please tell them how much you appreciate their support and would like it to continue! 
p.s. - We do ask outside folks to come in and answer questions related to various machines, etc.
I think the manufactures stay off the Boards because of liability concerns if they were to post information. I noticed in the member list the CEO of NxStage is listed as member Home Dialysis Central but I’ve never seen a post. I think his lawyers probably prevent him from posting. I am sure the posts by the person who uses the name “Debbie” get the folks at Aksys riled up because of the negative slant of the posts. I know “Debbie’s” posts make me grit my teeth.
It would be helpful to have someone from the renal community of experts address some of the issues “Debbie” and “mmiller” raise. For instance why can’t the NxStage use it’s own dialysate to prime the lines or give fluid during treatment? Or mmiller’s question about off label use of the machines for self-dialyzers. Isn’t all home hemodialysis use of the NxStage off label? It would be helpful to have someone from NxStage explain the machine’s status in the eyes of the FDA.
I’d like to hear from someone at Aksys who could report on the reliability issue. I’ve heard from people at NKC and the Lincoln program say that the reliability issues have been addressed but really only the company is in position to give an overview. It is too bad that we can’t hear the unedited views of a manufacture of their competitors product, I’m sure the people who have dedicated their lives to finding a solution to the problem of ESRD have strong opinions of the different solutions now on the market.
As patients we’re left with the job of sorting through the information available and we have to judge the value of that information. It would be nice if the various Home Dialysis Central sponsors posted periodic updates. Signed posts from reliable sources would only help to clarify a confusing situation.
Dori writes:
A direct mail letter is a great idea. We just sent out sponsorship info for 2005-2006, and once we see what sort of support we have, we can plan to do things like full-color posters of the Home Dialysis Central postcard and direct mailings to clinics.
>>Great. I would like to read more postings on this board from home patients as well as their doctors and nurse educators. It is a rarity for a nephrologist or nurse educator to come to the board to educate. Is there any reason why they can’t?
Bill writes:
I think the manufactures stay off the Boards because of liability concerns if they were to post information. I noticed in the member list the CEO of NxStage is listed as member Home Dialysis Central but I’ve never seen a post. I think his lawyers probably prevent him from posting.
>>Surely there is some way that the manufactures can participate on this board?
Bill writes:
It would be helpful to have someone from the renal community of experts address some of the issues “Debbie” and “mmiller” raise. For instance why can’t the NxStage use it’s own dialysate to prime the lines or give fluid during treatment? Or mmiller’s question about off label use of the machines for self-dialyzers. Isn’t all home hemodialysis use of the NxStage off label? It would be helpful to have someone from NxStage explain the machine’s status in the eyes of the FDA.
I’d like to hear from someone at Aksys who could report on the reliability issue. I’ve heard from people at NKC and the Lincoln program say that the reliability issues have been addressed but really only the company is in position to give an overview to lend credibility to their products?
>>These questions, and many others, leave potential home patients hanging.
Bill writes:
I’m sure the people who have dedicated their lives to finding a solution to the problem of ESRD have strong opinions of the different solutions now on the market.
>> Is there a reason why we do not hear from these individuals?
Bill writes:
As patients we’re left with the job of sorting through the information available and we have to judge the value of that information. It would be nice if the various Home Dialysis Central sponsors posted periodic updates. Signed posts from reliable sources would only help to clarify a confusing situation.
>> Patients have a difficult enough job dealing with kidney disease. Clarification from Home Dialysis sponsors would build trust and enlighten patients as to which modality/machine is best for them.
Forgot to enter my name above.