Good luck with your choices, Jane. I respect you being a careful consumer about this. I suspect that no matter what I or anyone else says, pro or layman, at some point, you’re just going to have to take the leap and do it, and see how it goes. No matter how well you’ve planned it and thought about it, things can and sometimes will go wrong. Like the choice between PD and hemo, there are things you just can’t predict, and, it’s not an irrevocable choice. You can always switch or go back. Keep in mind that the “pros” aren’t on dialysis themselves. I don’t care what anyone says, there’s a world of difference between providing dialysis and renal care and actually being the recipient of it!
I’ll be switching from short daily to nocturnal next week. I’ll be able to give you my observations after I’ve done it for a while. One thing I can tell you already though, is that, while it’s certainly better than 3/week hemo, short daily is fairly intrusive on daily life. It’s relentless - always a significant part of each day every week except one, and it takes a lot of motivation sometimes to actually do it.
I personally feel that because it’s done at night, which is downtime anyway unless you’re a real night owl, and because it’s longer, with all the dietary advantages that brings, nocturnal is more worth the effort than short daily is. I think a person like me, with some residual kidney function and, hopefully, getting closer and closer to a waiting list kidney transplant, might reasonably decide that 3 times per week is good enough compared to short daily hemo. Nocturnal is more worth it because of the fact that it pretty much eliminates the diet. Short daily runs at the same flows that you do in centre, and so it takes the same level of vigilance during treatment. If you’re doing it alone, you really have to stay awake and alert. At in-centre dialysis, my treatments were 3-1/2 hours, and I used to be happy if I managed to fall asleep. At home, you can’t really sleep through short daily if you don’t have a partner watching over you. For one thing, at the very least, you have to do a round every 30 minutes, and, in the meantime, there are bound to be some venous and/or arterial pressure alarms, TMP alarms, etc. You have to respond to these fairly quickly.
Either short daily or daily nocturnal, this is a LOT more responsibility than just showing up at the dialysis centre every other day. Aside from the dialysis itself, there’s having to think about the supplies. It does take some management. I get mine once a month, due to lack of storage space where I live, but some people get them for two months at a time. But either way, it’s not as simple as one might think, and you have to make sure you don’t run out of anything. You go through some consumables a lot faster than others, and you have to be sure you don’t mis-count things. Also, all the different test strips (I have three, one for peroxide, one for chlorine, and one for chloramine) have expiry dates on them, but, you tend to run out of useable “after opening” time with them before you actually run out of the strips themselves. So, you have to check that periodically. You also have to rotate your supplies as fresh ones come in. Even the saline has an expiry date. Not a big deal, but it is one more thing you have to keep track of.
So far, doing short daily since March, I’ve only had to miss one treatment, the evening my R/O stopped working. Other than that, I haven’t missed a beat, but I have made a few clamping/unclamping mistakes which necessitated starting the setup all over. I can’t think of too many things that could go wrong with the actual water supply though, except maybe a hose somehow accidentally becoming disconnected (although they seem pretty secure in my installation - touch wood!). What could go wrong fairly easily though is the drainage. Once that machine is installed in your home, you’re really on your own as far as plumbing goes, and as we all know, household drains are prone to blocking. Any resistance in the drain will definitely affect your dialysis. For example, if you live in a place, like I used to, where tree roots regularly blocked the main drain from the house and rotorooter had to come in, it could be a miserable problem. I’ve only had one water leak since I started short daily, and that was the day the drain bag hanging on the IV pole sprung a leak during priming. I was out of the room at the time, but the water leak alarm on the floor under the dialysis machine sounded immediately - and so it wasn’t too much of a mess. I did have to rip everything off the machine and start over though.
Buttonholes can be a source of frustration. It officially takes 6 sharp needle sticks to “establish” each buttonhole, but my experience has been that it takes a good couple of months before they are really well-established. Before then, every single treatment, you don’t really know for sure if the dull needles will both go in that day until they actually do. The buttonhole seems to heal over too easily sometimes, and only a sharp will penetrate it. So, you have to switch on the fly. While you’re doing this, the machine might alarm, as it’s taking a long time to start the treatment, and, if the other needle is already in, you have to make sure it hasn’t clotted. You have to be able to keep your cool under these kinds of circumstances.
Other thing a person might not think about before it happens is that, if you’ve trained to do this alone, you’re on your own on those days when you might not feel as well, or when you’re actually sick with a cold or something. Trust me, there are days when you really have to kick yourself in the butt to get on treatment. It takes a lot of motivation. I would not want to be in a home hemodialysis situation where I couldn’t get easy access to the regular dialysis centre if I needed to do so. So far, since I started home hemo, I’ve had 3 treatments in centre, two at the hospital dialysis centre on the day I had a fistulagram and then the following week after the angiogram, and then a few weeks later for follow-up when they had to do a transonic on my fistula. If any day comes when I’m really not in shape to do my own dialysis that day, either of the two local hospital acute dialysis centres would be able to take me, because all dialysis in this city comes under the same organization, the same nephrologists, etc. I find that comforting to know, because I don’t have a partner who can do this for me.
One thing I had not anticipated is that, unlike at most dialysis centres, where they follow hospital rules as far as ambient temperature goes, you’re not automatically freezing each treatment. Recently, we’ve had a heat wave here - actually combined heat and smog alerts for better than two weeks. I have a little apartment air conditioner, but, it’s not in my bedroom where I do my dialysis. When it’s hot, it’s hot, and it’s very uncomfortable.
Anyway, I just thought it fair to talk about some of the possible negatives, even though my experience so far has been positive overall. But, I will be happy to switch to nocturnal soon.
One last thing. Sometimes, I think it’s actually best not to frequent internet forums for a while. Picture this. You’ve done your 6 weeks of training successfully (not a small achievement, really). You’re happy as a pig in you know what as you start doing your own treatments at home, you’re getting more confidence in yourself, in your training and in your machine every day, but then, there’s always someone bringing up the potential risks and the dangers of it. Frankly, I prefer not to be constantly reminded of the risks posed by hemodialysis since I have no choice but to be on it - no matter whether it’s at home or at the dialysis centre. Enough said!
In conclusion, I made the “leap”, and I have no regrets. It’s so great to be off something as simple as TUMS, and to be able to eat so many more things. It’s truly wonderful to be off BP meds. In addition to diet, I just feel so much better and stronger.