Anyone Else Been Offered Six Days a Week Dialysis?

[Stacy Without An E]

A year ago one of the Dialysis staff members came to me and asked if I'd like to be in a one year research study.  They were offering to pay $100 at the beginning and end along with other small stipends when I took time out from my schedule to get tested for motor skills, blood work and X-rays.  There would be two groups: a control group (3 days a week/3 hours) and the experimental group (6 days @ 2 hours)  Everything was randomized by computer and I was placed in the control group so I stayed in my regular schedule.

The study wraps up on December 4th when I drive to the city and have a final MRI.  I'm taking the day off and I've received a $100 Visa Gift Card and a $50 check to cover expenses.  I spoke to the representative in-clinic last Wednesday and they once again offered me the chance to go on six days a week.

I've been having a really difficult time working on days when I have to work all day BEFORE Dialysis.  I don't sound as good on air and it's difficult to get through the day.  But on days AFTER Dialysis I feel pretty good.

I'm wondering what everyone thinks about six days a week @ two hours a shift.  Would you be willing to do that or would it impose too much on your personal life?  Do you think it's worth the extra time to feel better?

Thanks...and Merry Christmas.

[willieandwinnie]

Stacy Without An E

My husband found that if we did home hemo every other day he felt much better and his labs were also great. Not so much diet restrictions and didn't crash like 3 times a week for 3 hours. The nice thing about us doing it at home is we pick the time and if Len wanted to go to bed right after he slept it off. We were ask of we wanted to do nocturnal right before Len's transplant. He said NO.

Please let us know the results of your study. And Merry Christmas to you too. 

willieandwinnie

[Bill Peckham]

I'm wondering what everyone thinks about six days a week @ two hours a shift.  Would you be willing to do that or would it impose too much on your personal life?  Do you think it's worth the extra time to feel better?

Thanks...and Merry Christmas.

I would definitely give it a go - you can always switch back right? You'd have twice the commute, etc but it could be the best thing for your life and schedule allowing you to maximize your time off the machine. You'll never know unless you try ... it seems to me there is great upside and little downside. Do you have a fistula? You'd want to go to buttonhole too.

[Joe Paul]

I would do 6 times @ 2 hours for sure. To answer the question, I have never had the offer. To tell the truth, I think 6 days would improve my personal life, I bet I would have lots more energy. As it is, on dialysis days I struggle to get motivated to do much of anything, but I do - it just takes much more time to get things done.

[Marvin]

On home hemo, I go six days a week for about 2 1/2 hours each day.  (I was previously three times/week for 4 3/4 hours -- 12 years.  I've been on home hemo for four months.)  There is absolutely NO comparison for me -- the home hemo, six days a week is much better.  I have more -- lots more -- energy every day (and not just on "off" days like in-center).  I can drink a little more because I take it off every afternoon (but you have to be careful and not go wild with this one! -- a little more is a LITTLE more not a gallon or two more).   I struggled with lab levels for 12 years on in-center, but since home hemo, my labs are perfectly normal.  Get that!     It does take a lot more time, but it's worth it to me.  My body feels so much better on the inside with this six days thing.  The best part is that I'm at home doing all of this.  If I had to go in-center, I might not like it as much.

[BarbieQ]

I switched to home hemo six times a week in July. I have never felt better. I continue to work full time. there is an adjustment period. I am on 2 hours and 6 minutes daily. It takes 20 minutes to set up the machine and around 20 minutes to clean up. You have to have a care giver to be with you. My husband helps me. I set up and he sticks my fistula and cleans up while I hold pressure on my sites. You will have to establish button holes in you fistula. I had a period of time when I was overwhelmed by the time factor each day, but the thought of having to go back to in center made me think again. I have a team of people that I can call to help with problems. I use Nxstage and they are very helpful also.

[stauffenberg]

THe fundamental problem with dialysis as a treatment for renal failure is that you have to destroy your quality of life to preserve your life, which puts you in an uncomfortably paradoxical position.  You have to balance the medical gains from more dialysis, and from more frequent dialysis, against the losses to your time for quality living.  If you live 6% longer with daily dialysis but daily dialysis takes up 2 hours extra per day of your time, thus reducing your waking life by 8.3%, is that a net gain or a net minus, given that you are not completely dead during dialysis, so the time is still worth something.

For me, I found that every dialysis treatment of 4 hours cost me 7 hours in total, including preparation and travel time to get there and back, manifold inefficiencies of the dialysis clinic causing unnecessary waiting, plus the time lost in being put on and taken off the machine.  So treatment for 2 hours a day, 6 days a week would have cost me 18 hours a week of additional time lost over conventional therapy -- a huge deficit, about equal to the cost to me of having an unpaid part-time job!  It would not be worth it, I would think, to anyone with anything else to do other than dialysis. 

[Bill Peckham]

For me, I found that every dialysis treatment of 4 hours cost me 7 hours in total, including preparation and travel time to get there and back, manifold inefficiencies of the dialysis clinic causing unnecessary waiting, plus the time lost in being put on and taken off the machine.  So treatment for 2 hours a day, 6 days a week would have cost me 18 hours a week of additional time lost over conventional therapy -- a huge deficit, about equal to the cost to me of having an unpaid part-time job!  It would not be worth it, I would think, to anyone with anything else to do other than dialysis. 

Your math is off. You contend that each treatment took three hours of time in addition to what ever the machine was set for (7 - 4 = 3), meaning it took you 21 hours a week for your renal replacement therapy. Had you dialyzed 6 days a week for 2 hours you'd have committed 30 hours a week to the effort [(2 + 3) x 6 = 30].  9 hours difference. The question then becomes: How much better would the 138 non-dialysis hours need to be to make you calculus favor 6 treatments a week? Once again math to the rescue.

The additional 9 hours is 6.5% of 138, so if each non-dialysis hour was 7% better then it would be a good deal. 7% better sleep; 7% better sex; 7% more enjoyment of eating; 7% smarter; 7% clearer thinking; 7% more energy; 7% clearer skin and eyes; 7% happier.

In my experience (and it would seem yours) more frequent dialysis is a bargain.

[stauffenberg]

I agree I made a slip in calculating the additional time lost over conventional therapy, since I neglected to consider the time I would have lost in preparation and ancillary time with conventional therapy anyway, so the additional loss of time is only 9 hours -- although the total loss of time in addition to the dialysis time is still 18 hours.

But from there on all the numbers are just based on arbitrary assumptions.  For me, my normal waking week is 112 hours (i.e., 8 hours a night), not 132, and whether the boost in quality of life would be 7%, 50%, or 1% from the more regular treatments is just a guess.  Also, there is a theoretical problem with comparing quality of life against quantity of life, since for some people, like Gary Gilmore, immediate death might be preferable to a very low quality of life for many decades in a prison, though most capital offenders, since they fight for life imprisonment rather than the death penality, seem to prefer longer, lower quality of life to immediate death.

[Bill Peckham]

Nothing is arbitrary. By your reckoning dialyzing 6 days a week would "cost" you 30 hours of time. That leaves 138 hours when you are not dialyzing (168 - 30 = 138). Compared to your chosen regime that is just 9 more hours a week given over to dialysis (I'm not sure where 18 hours ever enters into the discussion).

You want to discount the improved sleep but most people comment on how much better they sleep after switching to high dose dialysis so it should be something for people to consider. From there it is all math and whether one uses the 7% threshold including sleep or an 11% threshold looking at only waking, non-dialysis hours ( 138 - 56 = 82 : 9 is 11% of 82 ) it is a low threshold of value and from my personal experience I can tell you it is a time bargain. My advise to Stacy stands "You'll never know unless you try ... it seems to me there is great upside and little downside."

As far as your death row construct it is spurious because no matter which schedule one chooses they will still be on dialysis. The question is how does one make the most of ones life during the time they are not on dialysis (or even while on dialysis but that is another conversation) - dialyzing 6 days a week will deliver nearly twice the dose of dialysis (using the hemodialysis product to quantify dose). And there is no problem comparing quality of life, you are only changing the number of treatments a week.

Here is another way of thinking about it, as if we are talking about two jobs. One requires 21 hours a week for which you receive 210 dollars US. The other requires 30 hours a week and you are paid 300 Euros. Not only would you make more a week you would also make more each hour. Dialyzing daily makes each hour of dialysis more valuable, this is an apt comparison.

[stauffenberg]

My figure of 18 hours lost per week on the 6 times per week schedule comes from the fact that in every treatment, the travel, preparation, and waiting time costs 3 hours, so the more treatments per week, the more time lost.  6 treatments per week x 3 hours wasted each time = 18 hours, in contrast to 3 treatments per week x 3 hours wasted each time = 9 hours.

When you write that "there is no problem comparing quality of life, you are only changing the number of treatments in a week," I calculate the loss in quality of life in terms of the additional 9 hours a week of useful time you lose in the time involved in travel to the dialysis center, preparation for dialysis, and waiting around for the nurses to do their job.  Even though the total treatment hours stay the same, the inefficiencies they generate become greater as you increase the number of treatments per week.

I don't think you can discount any units of 'lost' time totally, since sleep, waiting around at dialysis, and even dialysis itself all have some occasional elements of life value in them.  So all these calculations are really arbitrary, since the value people find in unpleasant, neutral, or boring experiences will vary greatly, so no general values can be assigned to these time periods, which are certainly not worth just zero.  You might even want to assign some experiences a negative value, if you would prefer being dead to going through them, and this realistically represents what people do who decide to take themselves off dialysis.

The problems of granting some degree of value to all experience become smaller as the consideration becomes simpler, so I think if you just say that losing 18 hours a week to time lost ancillary to dialysis is twice as bad as losing just 9 hours a week that way you are relatively safe, since any subjective value people might find in waiting around or travelling is the same in both cases and so cancels out.

There is also the problem of 'multiplicative' or 'catastrophic disorganizing' losses.  Thus, if I have to devote 21 hours a week to the entire process of dialysis but it only interrupts my life three times a week, my chances of still being able to put together, design, and plan some coherent life plan around that intrusion may still remain intact.  But if I have to devote 30 hours a week to dialysis and every day of the week except Sunday is torn apart by dialysis, then even with a lot of energy and ingenuity, may life may still be in shambles and impossible to construct into any coherence which reflects my plans rather than those of the treatment.

[Marvin]

 

For me, I found that every dialysis treatment of 4 hours cost me 7 hours in total...

Unlike Stauffenberg, I don't calculate what dialysis "costs" me -- rather, I try to look at it from the viewpoint of what dialysis "gives" me.  It gives me another day to live.  I don't dread my treatments (even though I'd gladly give them up if I could).  Instead, every day when I get ready to start a treatment, I think to myself, "I'm doing this so I get the chance to have another tomorrow."  Even though there's no guarantee that I'll be alive tomorrow, dialysis certainly increases my chances drastically!

I am, however, impressed with Stauffenberg's mathematical genius ability.  WOW!  You've certainly thought all of this out.  But, that's too much math for me.  My dialysis equation is something like this: Without dialysis, I'd be dead in a week or two.  That adds up to a big, fat ZERO.  Anything better than zero is good enough for me.

But, back to the original thread...six days a week makes me feel better both during the hours I'm on the machine and definitely during the hours when I'm not.  Stauffenberg also said:

So treatment for 2 hours a day, 6 days a week would have cost me 18 hours a week of additional time lost over conventional therapy -- a huge deficit, about equal to the cost to me of having an unpaid part-time job! It would not be worth it, I would think, to anyone with anything else to do other than dialysis.

I've always tried to view dialysis treatments as my "part-time job."  But, I don't think it's "unpaid."  I get a big pay off from my dialysis -- I call it a little more life.  For me, that's worth more than money.  I also endure my treatments because I have something else to do other than dialysis -- like live.  If I didn't have anything else to do except dialysis, I'd stop doing the treatments.

[jbeany]

Hmmm - back to Stacey . .. You're talking about doing this in-center, not at home, so I think the quality of your center comes into play.  How long do they leave waiting before you get hooked up?  How often are they running behind schedule?  Also, how long is your commute time to get to the center?  I switched to home hemo, and I feel like I have twice as much time and energy now that I'm doing it at home - but my center is an hour away in good weather, so part of the time I was losing was the two or more hours I had to spend driving to and from the center.  Switching to more days and hours on home hemo actually saved me time.  If your commute is only a few minutes, and your center is usually on schedule, then adding extra days would be worth the slight increase in time lost because you would have more energy all the time.

I'm with Bill - try it and see how you feel - I know that I felt better from the first week I switched.

[Stacy Without An E]

Thanks for everybody's input.  I'm in-center right now and since I'm the last one I never have to wait for my chair.  They are always ready when I get there because they want to get me on and started so they don't have to be there all night.  And the center is only three miles from my work, so commuting isn't an issue either.  They are starting later shifts on Tuesday, Thursday and Saturday (presently they closed early on those days because of lack of patients)

I'm leaning toward changing in January right now just to see if I feel better.  The longer I'm on Dialysis it seems the less energy I have which is disappointing.  You think one's body would be able to adjust to regular treatments, but it seems to take a toll.

Thanks again for everybody's input.