At the risk of highjacking someone else’s thread, or being accused of horning in on someone else’s private discussion (come on guys, lighten up! - I think you guys may be getting too much dialysis, or maybe not enough), but in response to Dori’s message…
As you know, I’ve gone from 3 times per week, to short daily, to daily nocturnal - in that order, and without interruption. In my humble opinion, there is no, absolutely no substitute for time on dialysis. Frequency is good, but it is no substitute for time.
Short daily hemo
More often is better. I found short daily was better than 3 times per week, but not dramatically so. I did short daily for 3 months. During that time, my TUMS were reduced from 3 times per day to just one once a day. My BP did not normalize without meds. My diet liberalized, but I still had to keep on eye on fluid. You can only remove so much fluid in a 2 hour treatment. I felt better, but it was a real pain in the you know where doing dialysis 6 days a week during the daytime or evening. It felt overwhelming. At the time, I thought it was better, but I still hadn’t experience daily nocturnal hemo.
Daily nocturnal hemo
Daily nocturnal is very much like having a kidney transplant, but without the anti-rejection meds. I’m not exaggerating when I say my BP is better than normalized without any medication (for the first time in 20 years). I need no phosphorus binder at all - none. I can eat and drink whatever I want. Instead of limitations, I have reverse limitations. By that, I mean that instead, I have to ensure I eat enough of various things, including sodium and phosphorus. And, if I just left it to thirst, some nights, I could easily end up with not enough fluid to remove (it has happened).
Can you imagine being called by your renal dietician a few days after your latest labs specifically to be told to eat more phosphorus, with suggestions of eating more cheese, ice cream and drinking more cola? This is exactly what happened to me after a single week on nocturnal. While I’m still on the smallest possible dose of Eprex, I could probably do without it. My hemoglobin is the highest it has been since before I had more advanced chronic renal insufficiency. My doctor was even going to increase my weekly dosage interval to 2 weeks, but decided against it for the time being. I think she wants me to enjoy the extra hematocrit for the rest of the summer
All across the board, my pre-dialysis numbers look much like they would have 5 years before I was on dialysis. It’s that good. So far, I’ve pretty much found it impossible to out-eat the daily, long dialysis.
Now, there still are limitations to some extent. Dietwise, while I haven’t been told to do so, I find that I still keep a mental count of my potassium intake. I don’t think I could eat too much potassium in one day from the end of one nocturnal treatment in the morning to the beginning of the next in the late evening, unless I made a real effort to do so. But, since potassium is the one immediate threat for any dialysis patient, I still, perhaps from force of habit, don’t go overboard with potassium.
In terms of fluid, I have no limits. So far, I’ve found even 4 litres easy to remove on nocturnal. I mean, with 7-8 hours of treatment, you’re still looking at removing less than 600ml per hour. There is a practical limit though. If I end up having to miss a treatment, for whatever reason, and I’m already more than 2 litres overweight, the next day, I have to limit my fluid more. This is because, while the dialysis itself can remove the extra fluid without any problem at all, my body doesn’t really feel well with fluid beyond 2 litres or so over.
The only disadvantage of daily nocturnal hemo is that you have to keep doing it. It’s not like you can take a vacation from it. And even if you could, say by reverting to 3/week hemo, you wouldn’t want to. Let’s face it, it’s a bitch to have to setup and get on treatment by yourself at 10pm or so, when you’re starting to feel sleepy. You don’t want to get on much earlier than that, because if you do, you will have to get up too early in order to take yourself off (but since you’re doing it, you do have that flexibility if you want to make use of it). So far, when I’ve been feeling too sleepy to start, I’ve been able to give myself a boost with a good strong dark roast coffee. I only like strong dark coffee anyway, so, to be honest, it’s not exactly a sacrifice.
It did take me and my body a couple of weeks to get used to it though. You can’t toss and turn on nocturnal. You have a variety of available sleeping positions, but if you toss and turn too much, you will definitely be wakened by pressure or TMP alarms. It is surprising how our bodies adapt to things though. I have no problems with this at all now. People ask me constantly how I manage to sleep hooked up to a machine like that. Well, I just do. I even have somehow gotten into the habit of waking up with just 1 minute left in the treatment. Sleeping through a whole treatment seems a lot shorter than even a 2 hour daytime treatment.
Dori talked about kt/V. You know, some nephrologists who have experience with daily nocturnal hemo feel that, while kt/V is great, it’s not that meaningful. Nobody really knows what kt/V means in terms of daily nocturnal hemo. Daily nocturnal is almost like having functioning kidneys for a third of the day, in many respects.
I do think a person can get too much dialysis. True, native kidneys work continuously, but what they also do is to constantly adjust what they do to what the body needs at any given time. With dialysis, you only get what you get. With the long, slow daily nocturnal treatments, you’re mimicking as much as possible the slow shifting of various things from cells to bloodstream. This is something that short treatments cannot do. With daily nocturnal as it’s currently done, you run your dialysate at 300, and your blood pump at 200-300. Plus, many people run with a bicarb of 32, and, a potassium of K3. This makes a world of difference. You get up in the morning and you don’t feel like you’ve even been on dialysis at all. Gentle is the operative word here.
Another thing I would not dismiss entirely is the matter of risks. We have discussed the risks of home hemo ad nauseum on here. Basically, I know there are some added risks, but I feel they are minor in comparison to the benefits of daily nocturnal, and besides, they aren’t much different than the risks at the dialysis centre - except that you do dialysis so much more often and longer.
As I said at the beginning, there is just no substitute for time on dialysis. But long dialysis sessions can be very hard on the patient. I mean, I even found it unbearably long to sit there for 3-1/2 hours. Daily nocturnal solves this by having the patient sleep through it.