There has been a lot of machine-specific commentary on this board lately, at least, since I’ve been here. My personal message has consistently been that the importance of the make of dialysis machine you use is of very little significance compared to just the benefits of daily hemodialysis - short daily, and especially daily nocturnal hemodialysis.
My experience with daily nocturnal hemo (8 hour treatment, overnight, 6 nights per week) has been nothing short of astounding. To give you a concrete, specific example, last night, I started setting up sometime around 9, and I was on sometime after 10. I had a few venous pressure alarms the first hour while I was watching TV anyway. This seems to be common, because at least in my case, the venous and arterial pressures seem to want to equalize, more or less, the first hour after starting the treatment. After that, I fell asleep, and there were no more alarms all night. I woke up with about 30 minutes to spare before the end of treatment. After taking myself off, I started the acid clean and then heat disinfect cycles in the dialysis machine. I didn’t need to go back to sleep, because I felt totally refreshed after a good night’s sleep. I was actually eager to get up and start the day. Now, if this had been a regular 3/week in-centre treatment, as I did for almost 3 years, I would be sleeping right now, and I would in effect be wasting at least half the day beyond the actual treatment time. I didn’t lose any time from having to do an 8 hour treatment, because I start it at about the same time I would be going to bed anyway, and I’m off by 6 or 7.
Instead of having to spend half the day sleeping this morning, I was out walking my dog at 7am on this beautiful Canada Day morning in the Nation’s Capital, a mere half hour after coming off my treatment, and during the time the machine was doing its heat disinfection. Since starting daily hemo at home in March, this is something that I’ve been able to do much more than before. Until that time, I was lucky if I could walk a block without getting tired and short of breath. Now, I can easily walk 6 blocks or more, and I can do that almost immediately after my nocturnal treatment. There is truly zero recovery time, unlike regular hemodialysis, and my energy levels seem to be much better over the entire day. I’ve gone from feeling half dead most of the time to feeling virtually normal. It’s like I’ve gotten 50% kidney function back.
But the benefits don’t stop there. I can now eat anything I want (it’s not totally unlimited, in the sense that if I decided to eat 10 bananas a day, I would certainly run into problems). I almost can’t eat enough phosphorus, and I actually have to supplement myself with Coke, and eat lots of cheese and ice cream. Compared to 90% of dialysis patients, both PD and hemo, for all practical purposes, I have NO diet. Not only can I eat, but I want to eat. No appetite problems now, that’s for sure. I have a voracious appetite.
As far as fluid goes, well, like the bananas and potassium, I imagine I would start feeling pretty full if I drank 4 litres per day. But so far, I drink something with meals and whenever I feel thirsty without giving it a second thought, and I still end up having to take off not much more than 300ml/hr, and in fact, most nights it’s less than that. So, for all intents and purposes, it seems to me like I have no fluid limit at all. That cold beer I have now every afternoon goe down real smooth
All in all, for the price of actually having to setup and do the dialysis 6 nights per week (and I could probably get by with 5 nights), I feel almost like I don’t have kidney failure at all.
I don’t exactly know what the mechanism of this is, but, still at the same dry weight, my blood pressure is lower. At this point, I don’t need any BP medication at all. To me, just that is worth it.
So, my advice to anyone who is motivated enough to do their own hemodialysis is to not agonize over machine choices and don’t sit there waiting for the next new upgrade or development. There’s always something new around the corner, and while you wait, you could be enjoying the benefits of daily hemo right now. Just do it. The sooner you get over that first hump of 6 weeks training, and the initial anxieties over doing your own treatments at home, the better you will feel and the quicker you will get to that point. It’s almost as good as having a kidney transplant.
I mentioned motivation already, but, I want to mention again that you do have to be motivated to be more in control of your treatment and to actually do the treatments. If you have to use a conventional dialysis machine, don’t be put off by that. It’s not that hard. If I can do it, anyone can.
Foundation for IgA Nephropathy