Good News & Question about the PHD

Discussions for Patients, Family, and Friends HD For Patients
21

It’s not exactly true that there is no flexibility in timing for nocturnal. First of all, you decide what time you want to start or finish, and what time you would have to start to finish at that time. While you would normally have chosen a regular duration of 6, 7 or 8 hours for your treatments, you can vary this when necessary, and you don’t really need anyone’s permission.

Yes, if you go to bed at a normal time of say 11, and your tx is 7 hours, that means you will be getting up at 6am to take yourself off (but you can go back to bed after if you want). But you might want to get to bed at 10, or midnight, or later than that. But you still have some play available with the tx duration. No much, but some. One fixed limitation is that you can’t go longer than 8 hours, because you would run out of acid and bicarb on a standard Fresenius setup. But even 6 hours would be plenty of treatment if you want to go shorter some night. So, in practice, you would usually want to start treatment not much earlier than 10, unless you’re a real early bird in the morning.

So, you do have some freedom, but not total freedom, I guess. But I mean, if for some reason you live by night and you wanted to do nocturnal by sleeping during daytime, what’s to stop you?

Look, no matter what kind or modality of dialysis you choose, there are some inherent limitations to being on any kind of dialysis. Daily nocturnal removes more limitations than it imposes. But, if as a patient, you didn’t think so, you just wouldn’t choose nocturnal. Of course, that would mean that you would be willing to accept more limitations on diet and fluid. You might also have to be on BP meds again, need more EPO, etc.

Once you take yourself off in the morning, there’s no reason not to go back to bed after. You could just rinseback, disconnect and leave the needles in (you simply disconnect from the bloodlines and attach a saline syringe to each needle line and tape them down to your arm). It would only take a few minutes. I never do that, but it’s possible. In that case, you would take the dialysate lines out of the jugs and plug them back into the machine, so that the machine doesn’t run out of dialysate and so there couldn’t be any alarms. You just leave it on and you can take off the tubing and disinfect later. Leaving it on isn’t going to hurt the machine any. The same machines are on all day long in dialysis centres, from morning until late night.

Pierre

22

Beth writes:
I get the sense that you’re struggling to make the right choice. The question you must answer for yourself…and no one else can answer it for you…is what fits best with your lifestyle and with your health needs. I suggest making a pros and cons list to help you decide this. No matter what anyone says, what is right for one person may not be right for you. In your pros and cons list, be sure to include anything that’s important to you – lifestyle, cost, convenience, and anything else you can think of. You can look at the Compare chart under the types of treatment on the Home Dialysis Central home page to give you a starting point for this list.

Remember, if you decide later that you don’t like whatever choice you make now, in most cases you can change to something else. Ask any “old-timer” and most will tell you they’ve been on most, if not all, types of treatment for kidney failure.

I am not struggling to decide modality. I would like to do nocturnal with some SDD txs mixed in. I have found it very difficult, however, to decide the machine model. I know how to make a comparison chart- that is not the problem. I have to have accurate info to put on the chart. Although my family and I have spoken to machine reps, I have felt it is important to hear the opinions and actual experiences of the home patients who live this life.

I am in a position where I have been given some choice in the machine, but once I make that choice, it could mean expensive plumbing and electrical costs, time and $ for staff training etc., so I don’t really have the option to try a machine model and then change my mind should I decide I don’t like my choice.

I feel very close to deciding which machine I would like to go with, but still have a few unanswered questions.

23

When I refer to flexibility I mean, eventhough there is a tight window with the PHD when it comes to nocturnaL txs, for me, nocturnal txs mean I would want to go to bed at about 11-12 nightly so I could do an 8 hr tx and awaken around 7-8 am. This is when I naturally awaken. I would not want to awaken any earlier than that.

The total naturalness of awakening in the a.m. is lost with a nocturnal tx. Pierre mentioned that one could turn off the machine, disconnect and then go back to sleep for awhile. Yes, this is an option. But for me, once sleep is interrupted, I may go back to rest a little while, but it is not the same as totally uninterupted sleep. I accept that the naturalness of uninterupted sleep is lost with a nocturnal tx and I accept that in lieu of the other benfits noctunal txs provide.

So, this is why I say that I don’t feel that there is much flexibility with nocturnal txs., anyway. Because no matter which machine I would be on, I would still want to start my tx at about the same time every night.

24

Personally I don’t think the PHD will be supporting nocturnal dialysis. If they wanted to why would they invest in a company to design a whole new machine for travel and nocturnal, the “next generation PHD”? I think in a few years they might have a new machine, but for now, it looks as if the Fresenius or the new machine are really the only machines suitable for nocturnal.

Cathy

25

Times are changing fast and all of you that use what you have now will be osbolete in about 3-5 years. There are some quite impressive dialysis tech designs in the making and all of them are leaning towards size. These machines are getting smaller and smaller in which you will be able to dialyze 7 days a week 24 hours a day without interupiton on your nights sleep. 8)

26

There is a press release on Aksys’ website at www.aksys.com/press/20051103.asp says:

[i]“Aksys is proud to represent the current gold standard in daily home hemodialysis treatment today,” commented Bill Dow, President and CEO of Aksys, Ltd. “Our partnership with Dean Kamen’s company marks Aksys’ ongoing commitment to develop innovative products and services that we expect to establish future benchmarks in hemodialysis therapy."

Development efforts on the next-generation PHD device will focus on the following capabilities:

Allow patients to perform short daily and nocturnal hemodialysis.
Perform both hemodiafiltration or hemodialysis or a combination of both.
Be a portable machine, allowing kidney patients the flexibility to travel with their devices.
Represent more highly advanced automation at a reduced cost to manufacture.
[/i]

27

Impressive indeed, the race is on! 8)

Smaller is better!

28

Jane,

There’s no way you can do home hemodialysis of any kind without having to give up some kind of freedom for the benefits you get. There are certainly limitations on sleep and wake-up times with nocturnal hemo, for sure. Short daily doesn’t have that limitation, but it does intrude on your daytime and compared to in-centre hemo, it does put the responsibility on YOU in a BIG way. When you’re on dialysis, you do what you have to do, and you choose what works for you, the same way you initially choose between PD and hemo. Personally, I think the limitations imposed by daily nocturnal are worth it in a dramatic way, but it’s nice to have to flexibility to do both nocturnal and short at will.

29

Jane, I don’t feel as though the naturalness in wakening is gone with nocturnal dialysis. I decide what time I want to get up and set the machine so it will be done at that time. I have always set an alarm to get up so the machine just takes the place of the clock.

30

My experience had been that my internal body clock adapted very quickly. Within days after starting nocturnal, I was waking up naturally minutes before the end of treatment. I then found that even if I varied the end of treatment time, I still woke up at that same time I had gotten used to. Personally, I don’t see what the problem is. Even if you don’t have kidney failure and you work, you still have to get up at a certain time in the morning, don’t you.

Now I find that once I wake up and take myself off, I’m not about to go back to bed. I’m raring to go for another day :slight_smile:

…unless it’s been one of those nights with a few alarms.

31

Pierre writes:
There’s no way you can do home hemodialysis of any kind without having to give up some kind of freedom for the benefits you get. There are certainly limitations on sleep and wake-up times with nocturnal hemo, for sure. Short daily doesn’t have that limitation, but it does intrude on your daytime and compared to in-centre hemo, it does put the responsibility on YOU in a BIG way. When you’re on dialysis, you do what you have to do, and you choose what works for you, the same way you initially choose between PD and hemo. Personally, I think the limitations imposed by daily nocturnal are worth it in a dramatic way, but it’s nice to have to flexibility to do both nocturnal and short at will.

Yes, this is exactly what I am saying. I accept the limitations on my sleep that I would have with nocturnal in return for the benefits. And I said I also agree that having the flexibility to do primarily SND, and SDD when a long tx is not possible or convenient, sounds like the best strategy to me. And absolutely, when on dialysis, one must put up the fight of his life if he wants to live, and live well. It will be a tremendous miracle if the new forms of dialysis that are being tested now free us from the best modalities we have at this time. But in the meantime, it’s fight for your life!

32

Pierre writes:
My experience had been that my internal body clock adapted very quickly. Within days after starting nocturnal, I was waking up naturally minutes before the end of treatment. I then found that even if I varied the end of treatment time, I still woke up at that same time I had gotten used to. Personally, I don’t see what the problem is. Even if you don’t have kidney failure and you work, you still have to get up at a certain time in the morning, don’t you.

It is good to hear that one’s internal body clock adapts to the nocturnal tx as far as waking up just before the end of the tx., naturally. I like not waking up to an alarm clock and naturally become concious anywhere from about 7:30-8:30. It is a time when my home is quiet and peaceful and I do my best dreaming, thinking and planning in the warmth and coziness of my bed. Also, I have never liked loud noise when I first get up and am not one to move around fast when I first get up in the morning. It sounds like you are saying your energy level is so greatly improved with nocturnal txs that you practically leap out of bed in the morning. Sounds great, but has never been my style.

I’m just saying that there are tradeoffs with the different dialysis modalites that we have to accept, like when I had a neck catheter and could not soak all the way down into a tub of hot water. When the catheter was removed, I could not believe how wonderful it was to fully be able to sink all the way down into the tub again. Kidney disease and dialysis affects our life and health in so many ways. Numerous of the simple pleasures of life are affected. So, I am very aware of this and don’t take anything for granted. We are given control back when we are permitted to select our modality, but even then, there are some tradeoffs.

33

Hi Jane

If you want to get up at 7:30am, and we assume an 8 hour tx (it could be anywhere between 6 and 8 hours), it would mean getting on tx at 11:30. With a typical conventional machine setup, that would mean starting setup around 10:00 to 10:30 depending on how fast you are. I would say 10pm would be more in the ballpark, because you will spend some 15 minutes or so getting your needles in and getting connected to the bloodlines. Despite all the hype, I can tell you those buttonholes don’t always go in smoothly. There are nights when you have to fiddle with one or the other quite a bit to get it in. Then there is that one night a month when you spend a bit more time on it because you have to draw blood work. On the Venofer night, you can’t go to sleep right away, because you can’t administrer it until after the first 30 minutes of tx, and then it takes about 10 minutes in all to administer it gradually and then measure your BP and log it. You could start a little earlier too and just let the machine recirculate, but, if you plan on a 8 hr tx, if you do that too long, you might run out of dialysate before the end (the machine is using up bicard and acidified from the two jugs as it recirculates). With nocturnal, it seems to me like we have a choice between “late to bed” and “early to rise”. I’ve been up as early as 5am, and I’ve started tx as late as 1am, believe it or not.

It’s not impossible to go for longer than 8 hours, however, you would have to wake up to replace the jugs, plus, there really isn’t much data about longer treatments than 8 hours.

Just some real world information to help you in making your decision. Keep in mind that daily nocturnal has the potential of easily giving you blood work results that look like you don’t have kidney failure at all!

34

In regards to running out of Bicarb and Acid. If you have a full jug you won’t run out. We always make enough bicarb to last more than 8hrs. I have run 9 hrs. treatment to allow the time I have lost getting right to bed after dad is on. If you fill the jug to 9.5 ltrs. you will need 1 box of bicarb plus about 118 grams. I say about because I would need to go up and check my sheet to be positive on the number.

35

We don’t mix our own up here. The jugs are from Baxter, delivered by them pre-mixed. Bicard is 8 litres, and acid is 4.5 litres. So far, I’ve run a few 8 hour treatments with over 40 minutes recirculation before getting on and I haven’t run out. It was pretty close though. Not much left in the jugs. I guess if you mix your own you could run longer. I tell you though, 8 hours is plenty for me. That’s why I prefer 7 hours.

36

Lucky You. I would like to use the premixed bicarb instead.

37

It does have the disadvantage of taking up a lot more storage room and then I have to dispose of the empty jugs (they just go in the plastic recycle bin on the ground floor of my building), but I’m for anything which reduces the workload I have to do for a treatment. All I have to do for a treatment is to carry one bicarb and one acid jug to the machine.