Just wondering do those on nocturnal ever take a night off? Say for a holiday or just for a break? Would be interested to hear from others who are on nocturnal 3-4 nights per week.
Hi Amba,
In the U.S., Medicare pays for dialysis 3x/week. So a number of the centers that offer nocturnal only offer it 3x/week (we don’t know how many do it that way). In that case, break is built in, since the treatment isn’t every night.
Centers that offer nocturnal 5-7 nights a week tend to lose money on it, since the extra treatments aren’t paid for unless a private health plan will pay for more treatments than Medicare, or a doctor is successful in writing a letter of medical justification. Even so, I’m not aware of anyone doing 7 nights/week–the most is usually 6, and even the centers like Lynchburg that used to insist on on 6 nights are now okay with 5.
HR 5321 is a new bill that would create a pilot program to enroll up to 10,000 patients for daily or nocturnal home hemo in the U.S. for 5 years, and collect data about costs and outcomes to help guide payment policy. If this bill gets enough sponsors (and a Senate version) and passes, more American patients will be able to get more frequent treatments.
I actually meant to say 4 nights a week or alternate nights. There is no 2 day break this way.
Please only respond if you do it this way
I do 4 nights a week, but last to weeks have dropped to every alternate night. I have been away for 5 days and just did a couple of daytime short in centre treatments. Made no difference to blood tests over that short amount of time.
Have been told by those doing nocturnal for a few years that weekends away are a great idea for sanity and relationships and I plan to follow that advice and have a weekend off every couple of months at least. Also when Nocturnal gets too much, changing to a shorter day run once in awhile does me the world of good. That is the beauty of Nocturnal!
In my program I could choose to dialyse up to 7 nights a week if i wanted, but while my blood results and blood pressure are great, why would I when I figure I am probably in this for a loooong time! :?
I’ve started looking at brochures for North Qld. on the basis that 2 x 5 hour sessions (Tues/Thur) @ Cairns or MacKay hospital in the middle of a Mon-Fri 4-nights away trip would be part of the holiday (not having to set up myself, etc.). Also weekends away @ Noosa, Byron or Stanthorpe…maybe Sydney to ‘do a show’ & so on. 8)
I was too run-down to even worry about getting out of the chair, for over 2 years. Now H.H.D. has me feeling almost normal & trips away are looking very attractive!! 
Visiting my old Dad, however, is still daunting. From here, you need at least a month to make round-the-world worth the effort, but I’d only be g etting 3 x 5 for 4 weeks, so the clearance figs would be taking a battering & so would I ! :roll: 
Thankyou for your input. Ive been on nocturnal for 6 months now and Ive only ever had 1 night off once or twice (intentionally) for xmas and something else I cant remember. The last time I had a night off I ran into water problems when I got home and ended up missing so much dx I was overloaded 7 litres (long story). Turned out my water testing tablets were probly faulty.
Im now a bit reluctant to have time off. But I plan too soon as I need to visit my grandparents, havent for a while now. Im confident in having 1 night off but not so sure about more than that. My potassium and fluid levels go up just thinking about going there :lol: They set the table at least 5 times a day, drink lots of tea etc!
I used to get that sort of thing with weight, looking in cake shop windows! :lol: :lol:
Oh you wouldnt want to go to my grandparents then bear, you are bound to gain weight if you stay there for more than a few days!! My parents have been going up there alot lately, for weeks at a time, and mum has put a fair bit of weight on. If she is going to give me a kidney I told her if I have to lose weight for the op then she does too :lol: