Starting Nocturnal

I will be starting extended therapy (read nocturnal) dialysis at the end of September. I am the only home hemo patient my nephrologist has and one of only four home hemo patients at my clinic. The nephrologist admits he is in uncharted waters and so far has trusted me to suggest ways I want to dialyze. The clinic is inexperienced and I don’t trust them to set this up as I will be their first nocturnal patient. Currently, I dialyze six days a week, BFR 350 - 370, 30 L of dialysate, with FF 35. I am taking off 1.5 - 2 liters of fluid per treatment. I don’t sleep well for long stretches of time, so want to start out with 6.5 - 7 hours of treatment. What should my new BFR and FF be? Should I use more dialysate? I could use up to 60 liters per treatment. I would appreciate any suggestions you might have that I can take to my nephrologist. Thank you!

Alaska Girl, I would recommend that your nephrologist consult with a US nephrologist who can mentor him or her through the process of helping you get started. If you really are in Alaska, you might have your nephrologist contact the Northwest Kidney Centers, in Seattle. (Google them!) They do follow some patients in Alaska. You really don’t want your nephrologist to be out there on a limb trying to care for you–and asking for advice online will get you generalities (Dr. Agar is terrific!) but NOT specifics for YOUR care, which is what you need. If you are elsewhere, message me and I’ll see who we can put your doctor in touch with. Most of the US docs who do nocturnal home HD are VERY willing to help others get going with this excellent therapy.

These Q’s are specific - Dori is right.

To answer sensibly (and correctly) I would need to know so much more information - your weight, your height, your BMI, your disease, your ‘vintage’ on dialysis, your residual function (if any), your co-morbidities, your medications, your blood pressure and volume status, your bone parameters … and so much more.

This post points up the limitations if Internet ‘advice’ systems … I can give broad and general ‘in principle’ answers but individual answers that need specific data are out of the realm of this site.

I am sorry to echo Dori’s response, but it is the right one. I am very aware of the North West Kidney Centre in Seattle, having spent some months there back in 2006 and knowing Chris Blagg and others from there for many years. As Dori says, they do run (or mentor/advise) some Alaskan patients and her suggestion that this could be a way forward is a good one.

If your nephrologist is keen to help but admits his uncertainty … and we all have had to go through a learning, growing process in our areas of now supposed expertise … he will be more than willing to learn and grow his knowledge and surety with home dialysis, nocturnal dialysis and the options and possibilities of the NxStage by forming a liaison with Seattle (or somewhere else if that doesn’t suit) to expand and build both his understanding and your outcomes.

I know that’s not the direct answer you seek - but it is probably the best, safest and most fruitful one for you.

Good luck … and let us know if that hasn’t produced a useful way forward