I have been doing daily nocturnal home hemodialysis in Hyderabad, India for the past six years now.
In July this year, I will be going on a cruise with Dialysis at Sea - the seven day Alaskan one from Vancouver. Before and after the cruise, I plan to visit a few cities in the US - Seattle, Las Vegas, Los Angeles, San Francisco, Toronto and New Jersey/New York. I have friends and family in most of these places and will be staying with them. I will be spending 2-3 days in each place.
I have contacted Davita and asked for sessions to be arranged at each place where I plan to have dialysis. They have started getting back to me on the paperwork required. They are charging me $480 per session irrespective of whether it is a regular 4 hour session or it is a nocturnal session.
I will be getting about 6 sessions - half of which will be nocturnal and half will be 4 hour sessions. I wanted all nocturnal but they don’t do nocturnal on Saturdays and they don’t have a center close enough that has nocturnal in Seattle.
I wanted to get your advice and thoughts on what this whole in-center thing could entail for someone who is used to daily home based nocturnal. I have been on trips within India itself before but none so long - at most 4-5 days. This one is going to be three weeks.
Do you think I can get nauseated? Do you think fluid restrictions will be a problem? How did you manage in a similar situation?
Kamal, is there some reason why you are only looking at DaVita centers in these places? I believe Northwest Kidney Centers in Seattle may have in-center nocturnal by now (ask Bill), and if you look in our database (http://locater.homedialysis.org/) you might find other centers in your destinations that offer you nocturnal.
It’s critically important to watch your potassium and fluid intake if you switch back to short treatments temporarily. One of the earliest experiences I had with in-center nocturnal (this had to be 2002?) was a medical director talking about his new program and noting that they had lost one patient who vacationed in DisneyWorld using standard HD, didn’t restrict potassium, and died.
Hi Dori, wow, you’re scaring me now! I will restrict my Potassium and fluid for sure.
I did connect with NKC in Seattle (talked to Bill as well) but they are frightfully expensive compared to Davita. Davita is charging me $480 per session whereas NKC charges $853!
I wonder why Davita doesn’t do in-center nocturnal on Saturdays though! Also the cruise itself will be all 4 hour sessions as they don’t do nocturnal.
So, I will be getting 4 four-hour sessions and 3 nocturnal sessions in all apart from the cruise. Hopefully I wil be able to restrict my Potassium and fluid enough so that I come back to India alive! hehehe…
In talking with staff who work at clinics that do nocturnal in-center, it seems like most clinics offer nocturnal on Sunday night, Tuesday night, and Thursday night. It could be because of the need to disinfect the water system or it could be because staff would prefer to work Sunday night rather than Friday or Saturday night.
Would the schedule at the dialysis clinic or on the cruise allow you to run longer than 4 hours if you were willing to do that?
I am really not sure Beth. Moreover, I don’t know if I will want to do that either. The beauty of nocturnal, to me, is that you get more dialysis while sleeping. The trouble with getting longer treatments instead of the four hour sessions is that I will need to lie there for longer!
That’s true that nocturnal allows you to have your days free since you’re dialyzing when you’re sleeping. The question is how important to your enjoyment of your vacation is being less limited on food and fluid. I knew a patient who dialyzed every other day for 5 hours. He did it in the evening after he got home from lhis full-time job and he ate dinner and watched TV while he did dialysis. His labs were great and he had a pretty liberal diet compared to people who dialyzed 3 times a week for 3-4 hours. It’s always a trade-off.
If you use NxStage…you could take your machine with you and dialyze when, where, and how long you want. You would have to arrange for your supplies somehow but that is secondary to the importance of scheduling your own treatments to fit your health and lifestyle. what have you been using for home dialysis all these years if not NxStage?
I leave in 4 days. Any tips for being better prepared for dialysis session in-center? Will they let me do my own cannulation? Will they have buttonhole needles? Can we dictate the treatment parameters like blood pump speed, UF volume etc.? Or do we pretty much have to go with center policies?