I need a good argument

[Shaymon]

Hello IHD

I am to start dialysis soon and would like to go on NHHD. At my local renal unit they are very obstuctive about going on to NHHD straight away. They also said the the training would take around 12 weeks to complete. They also stated that to do NHHD they want you to learn slef-cannulation first then go on to the training. They also explained that there was a waiting list and just because you may be at the top of the list you might not be the next to start the training.

In my defence I am still comparatively young and have a young family to take care of. I really don't want to spend lots of hours going to the hospital every week. Also the NHHD treatment is softer and has a better out come for the patient as we know. It would also be more cost effective for the hospital for me to do NHHD. I have found losts of documents and articles to support this agrument but they are still saying no way. Is there anything else that I can argue to help make my case and mey be change thier minds?

Does anyone have a link to share that would help me in my argument to get the choice of treatment that I want rather than what is more convenient for the renal unit? I would really appreciate your advice.

Many thanks for your time,

Shaymon

[greg10]

Welcome to the forum, Shaymon.
It took a little digging and reading to find out that you are probably in the UK, that is why it is important to list some more detail about yourself in the introduction and/or profile page. 

Dr. Agar of Victoria, Australia has done a very good and comprehensive writeup on NHHD in answering your question which you may have posted here: http://forums.homedialysis.org/showthread.php/2641-Machines-for-NHHD

I am not aware of any UK NxStage users here in this forum, but perhaps if you asked your question again, specifically seeking input from current and potential UK users of NxStage and/or NHHD, you may get more useful answers.

There are some risks associated with NHHD and it is not approved by the FDA in the US, perhaps that is why your clinic/hospital is not encouraging anyone to start such a mode of HD for patients starting out doing HD.

[wj13us]

Shaymon:

If you are in the UK you might want to post here:

http://www.kidneypatientguide.org.uk/newBB/index.php

It is a UK based message board similar to this one they should be much better at helping you through the system.

Bill

[Shaymon]

Hello Bill,

Thanks for the tip. I have posted ther and hopefully may get some help from it.

Nice one

Shaymon

[RichardMEL]

Hi Shay,

My only comment is that I think this is also about establishing you on a stable dialysis treatment schedule before training and sending you home. I know in our unit even when the plan was to go and do home hemo, they wanted to start people off under supervision, establish and maintain dry weights, make sure there was no issues with taking iron, or any problems with tolerating dialysis etc - I mean you wouldn't want to go straight home and have problems that could have been picked up easily in centre?

I understand you don't want to "waste" hours in the unit starting off when you have your family to look after etc, but it is a big change to start dialysis, and it makes sense to start, and to do the training, in the unit to establish the parameters of your own dialysis treatment schedule and what works best for you. Everyone's slightly different.

I hope whatever ends up being sorted out works for you too!

[KICKSTART]

If you are in the UK ? welcome. We havent really got going with NXstage yet , its all very new with very few people on it . Nocturnal hemo is available in centre, as are morning or afternoon shifts. I can understand your frustration and all the points that you make for doing NHHD but plenty of other people are probably in the same boat , so i would imagine it wouldnt be fair to give you priority over people that are also on that waiting list. Have you considered doing PD ? Whatever you choose you ARE going to have to train for it at the hospital. I dont think there is anything you can say to validate your claim to NHHD , to be honest. They will take patients who are experienced in Hemo when the NXstage becomes more commonplace, so they know what to look for and how things work. I doubt anyone would be considered for it that hadnt started on hemo yet. We would all love to be at home , than attend 3x a week.