Haven’t seen Pierre on here in awhile. If you’re out there Pierre, hope you are doing ok : )
Thanks for asking. Just taking a break for the holidays, although, I certainly have been pretty busy with my own IgA nephropathy support group and foundation throughout. I’m otherwise fine, doing well, still on nocturnal. Well, except that today word came out that all nocturnal patients here have to do short daily as of right now and at least for the rest of the week. Seems the dialysis centres here, which use the same blood tubing sets as home patients, have discovered a slight problem with them: the connections to the dialyzer can come off during treatment. At first they thought this was confined to just one lot of blood tubing, and they exchanged those, but now it may be all of them. So, they decided better safe than sorry until this is resolved, and I can’t say I disagree with them!
Foundation for IgA Nephropathy
Welcome back Pierre!
I certainly have missed your informative posts also. Your information about nocturnal trouble shooting has helped me greatly these last few months. What brand is the tubing that has been causing problems? 8)
It’s Medisystems, but it probably doesn’t apply to the whole line. Some machines of the exact same type are configured differently and so use different tubing sets than others might with the same machine. I just finished a short treatment tonight with no problems. It’s just that they don’t want to take the chance with sleeping patients until it’s sorted out and they are sure what lots are affected exactly.
Luckily, there’s nothing at all to switching from nocturnal to short daily on my machine. It’s just a matter of changing pump speed, dialysate speed, time of treatment and heparin time. Everything else is identical in every way. Oh, and I don’t add phosphorus to my dialysate for a short daily.
Where are you from. Within US?
I have forwarded the info to our center and they are very interested in knowing where you are located.
I try to keep our center up on this type of info. They don’t havr the time to read this board like I do.
Thanks for your help.
Pat Colongione :lol:
I’m in Canada. In Ottawa, to be exact. It’s a very large nephrology department, so problems like this come to light very quickly. I just want to be clear this is not stopping home hemodialysis nor in-centre - only nocturnal. It might not be safe to be sleeping if the problem occurred at that time, so nocturnal patients are doing short daily for a few days until it’s resolved.
Yeah! Getting new blood line sets tomorrow, then I’m back in business with nocturnal. These are from a totally different production line, made in a different factory. In just the space of a week on short daily, my BP is already much higher. I don’t know why, but for me, as an individual, there’s a big difference in BP between short daily and daily nocturnal. I would definitely need at least one BP med I think if I had to continue on short, because there’s only so much fluid you can remove before you get too dehydrated.
Having been on short daily before for 3 months, then daily nocturnal for 8 months, and then short daily this past week, other than perhaps some differences in lab results, as a person on a day to day basis, the biggest difference I see between short daily and nocturnal is the fluid. There is no fluid limit, for all intents and purposes with nocturnal. Even if you drink too much one day, there will be plenty of treatment hours to take it out gently. With short daily, on the other hand, assuming standard 2 hour treatments (you can do more, but who wants to be on dialysis longer than that when doing it every day?), even if you only gain a reasonable 1500 ml in a day, once you add in the 500ml for rinseback, you’re looking at a UF goal of 2000ml - which means you will be removing 1000ml per hour, compared to less than 300ml/hour in nocturnal (a 7 hour treatment, but could be 6 to 8 hours, by choice).
In addition, to get adequate treatment in 2 hour daily treatments, you have to run the blood pump at 400. In nocturnal, you could easily run it at 250 if you wanted to, (but no higher than 300 according to current practice), without significantly affecting the efficacy of the treatment or even changing your lab results much.
Low rate of fluid removal, combined with low rate of blood circulation through the dialyzer, makes for a much gentler treatment. You don’t even feel like you’re on dialysis, except for the neecles in your arm.