Pre and post assessments

My original post had to do with which assessments home patients perform. I believe that has been answered. When I said I would like to see involvement from more home patients and professionals on this board, it is in regard to the whole spectrum of info on home dialysis. I would like to have more info. on which to base my decision to choose a home program/machine than around 7-10 patients half of which have only posted sporadically.

As you said, service is key. There is no service in my area yet as there is no home program yet. I have to be sure that the company/machine I select provides good service. That is what I am working on now. And, with the info. I’ve read so far, it is not clear to me whether I would prefer short daily or nocturnal txs, so I’m waiting for more input here as well.

If I knew that short daily was sufficient for my needs, I would get started on it now with the NxStage. I’ve heard lots of good things about this machine/company. But until I rule out if I want nocturnal txs, I can not go with NxStage.

It seems that there are a few locations in the U.S. that approach home programs the way your system does there in Canada, starting patients out on short daily and then training them in nocturnal, providing them the opportunity to decide which modality they prefer. But most programs here are either/ or. And although I have established that short daily with NxStage is economically fesible, I don’t yet know if nocturnal would be covered in my area for one patient.

So, I have been granted the opportunity to choose one or the other and I feel I need more info. on service, patients’ experiences with the modalites, professionals input in order to make my final decision. I do not want to have the problems that some have stated regarding machine alarms in the middle of the night, backed up water system and I especially want to be assured of a back up tx in-center should my home machine require service.

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.

Pierre, I wanted to address a couple of your comments. First I want to say how much I agree with the statement about it sometimes being difficult to get motivated to get on. I will say now, that at around the 3rd month at home I got fairly depressed about the reality of it all, that we don’t even get a two week vacation a year, that this is something I have to do 6x a week maybe forever. However, about a month later it became really routine, I moan a groan for a couple of minutes and then just do it. I have set up down to 40-45 minutes and clean up down to about 20-25 minutes. I don’t think I can cut more unless I could do away with water.

With regard to a decision to do incenter until transplant, one reason I was allowed daily home is that it keeps you healthier for transplant. At Kaiser I think they want to encourage home daily for their healthiest patients in order to keep them that way. I know my father ended up dying from the aftereffects of kidney failure and 3x a week dialysis (at home) not from rejecting his transplanted kidney. The heart damage had been done. I think that was one reason I really wanted home daily, to keep myself healthy and alive for as long as possible.

I have already been on the transplant list for 3 years and probably have at least 2 more to go, that is a long time.

Hi Cathy

I agree with you entirely. I’ve also been on the waiting list going on 3 years, and I’ve seen other men my age (I’m 52) degrade to the point where they no longer are medically-fit for a kidney transplant (usually it involves the heart). I didn’t want this to happen to me, so, that’s one of the main reasons I decided to go for daily hemo at this point, whatever form was available.

I actually came close to this when I was hospitalized for 10 days in January because I had had chest pain while on dialysis. Luckily, I was only put on hold from the transplant list for a period of 3 weeks while they investigated it. Now I’m back on it, and let me tell you, it’s depressing to know you are not active on the waiting list. This is kind why I suggest to people that they should choose daily hemo no matter what the machine will be for them. The machine pales in importance, as far as I’m concerned, in comparison to the health advantages of dialyzing 6 days per week. Of course, that’s not to say that I don’t have great interest in machines like the NxStage and the Aksys which can make the whole thing simpler for the patient. I think that’s great, and it holds great promise for the future.

There are some misguided or misinformed people who think that as long as they keep exercising, their heart will remain fit despite dialysis. It helps, but there are other factors which are beyond our control. The esrd and the dialysis themselves cause damage no matter what we do. I think daily hemo offers some hope in this regard, or it at least puts some of the cards in our favour.

By the way, I had my monthly clinic appointment this morning, and now it’s official. I will be starting nocturnal on Monday - with a 3 night stay at the hospital. One reason it took so long after I finished my training is because the dialysis centre where they do this is under renovation right now, so, they had to find an alternative site to do it in. I look forward to having some practical experience I can report on with nocturnal. They will be doing very frequent blood work from the first night on, but already, my neph said today they will be adding sodium phosphate and potassium. I’m already low on phosphorus just from short daily. My dialysate flow will be 300, and so will my blood flow, at least initially.

I’m getting faster in my setup too. I’ve got it down to under an hour now, not including the time it takes to put my needles in.


Is your nocturnal program 3 nights per week or more? I have never gotten a clear understanding of the differences in 3x per week nocturnal programs vs 5-6x a week nocturnal. Excited to hear what you conlude about nocturnal vs short daily.

Can someone remind me - what is the set up and clean up time with NxStage since NxStage does not require a water system?

Hi Jane. My nocturnal hemo will be 6 nights per week. I’ve heard of people getting by with fewer nights. My dialysis unit is Ok with that, but they recommend 4 nights per week minimum. It’s kind of like short daily… Those who don’t do the full program may need to watch their diet and fluid intake more on the off days, and they may not as easily be able to stay off BP meds and phosphate binders.