Hello,
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
Hi Shaymon,
I think it’s terrific that you’ve done your homework and learned which treatment would best fit your life. A few thoughts, though, as to why you may be running into so much resistance:
1). Your clinic may have found that folks who start out in-center appreciate home more, because they have a better contrast with how lousy they feel there and then how much better they feel at home. This makes the effort of home treatment seem more worthwhile. Since the clinic has to invest in your training (they don’t break even on you for a year or more), they want to be sure that if you go home you’ll succeed there.
2). I believe they are vastly exaggerating the training time (12 weeks?! Unheard of!), perhaps to scare you off. I have to wonder how large their NHHD program is. Are THEY confident in their training skills? NOTE: You WOULD need to learn to put your needles in first.
3). Truthfully, it’s rare that folks go directly to any type of home HD. Keep in mind that most people don’t do the kind of homework you have, and they’ve never heard of it. Certainly, most people don’t know how very much better NHHD is (we’re working on that!). So, I wonder if the clinic might be willing to compromise by letting you go straight to short daily home HD? The training time is quite a bit less. It would be a lot MORE work at home while you do it–but if you succeed, I suspect they’ll be willing to let you move to NHHD pretty quickly, and the additional training would be pretty minimal. Another option might be to start on PD, prove that you can handle home treatments (you likely still have some residual kidney function) and then go to NHHD… But, that would depend on your willingness to consider PD.
How’s your insurance? If you have a good employer group health plan (EGHP), your clinic is likely to make a LOT more money if you can keep your job and EGHP than if you lose it because standard in-center HD makes it impossible for you to work. Maybe the home training team doesn’t understand that, but the clinic administrator would. Talk to him or her. Also, find out exactly WHAT the objection is, given your need to continue working and support your family. We’re happy to talk with those folks if it would help–send me a private message and I’m happy to share my contact info. Also, consider posting this same question to Dr. Agar. Perhaps seeing an answer from a nephrologist who deals with straight-to-NHHD patients himself would help overcome their reluctance.
Oops–forgot to ask if yours is the only NHHD program in the area? If not, and if your health plan lets you check out another, consider a different clinic. If your doctor is the issue, you can also change doctors.
Hello Dori,
Thank you for your reply. I have as sugested posted this thread for Dr Agar to read and hopefully respond (I know he’s a busy man)
I have consdidered PD but to be honest I don’t really want to go down that road, the main reason is that I travel a lot for my job and the exchanges could be a problem, also as I have poly-cystic kidney’s, they’re only going to get bigger and won’t leave much room for PD fluid in there. I’m only a medium build.
I didn’t mention that I live in the UK, so insurance wouldn’t be an issue but I understand your thinking with that one. As mentioned above I have no intention of NOT working and will do what I need to to get the treatment I want, but this time I need a little help.
There’s lots of papers on how good NHHD is both economically and health wise but I can’t find anything regarding pateint rights of choice to help and as for the medical side I fall short there too so that’s why I’m asking for help. Hopefully some one else who has been through this may post as well.
Thank you for the compliments on my reaserch. I think that it’s impotrant to learn all you can or it may happen that I’m just told what to do and when (like many others), but I don’t work like that.
Again Dori thank you very much for your helpfull reply.
Shaymon