I have finished up my second month of daily home dialysis and am feeling a bit frustrated. I had expected to start feeling quite a bit better with dialysis, especially daily, and don’t really find that to be the case. Getting the 20 pounds of fluid off certainly helped my shortness of breath, but I seem to still be tired most of the time (due to a lack of sleep because I don’t finish up with dialysis until around 12:30 am and need to be up by 7:30, plus my restless legs have been worse since starting dialysis and many days I only get 2-4 hours of sleep) and don’t have much stamina.
All of this I can deal with but I am most frustrated by my labs. I just got my most recent ones back and with only a day off my creatinine was 6.2 (close to what it was prior to dialysis, in the low 7’s) and my BUN was 40 (it was only in the 50’s prior to dialysis). My cholesterol has soared. They only do post numbers quarterly, so I don’t know what they are, they were 2.4 and 13 (fine) after dialysis last month so probably about the same since the BUN and creatinine were equivalent, but I’m assuming these pre and post numbers are pretty much the same as those doing only 3x a week experience. I was expecting to see my pre numbers closer to normal doing daily dialysis and am really depressed that they aren’t. Home daily dialysis is such a huge time commitment and I guess I want to see that it is all worth it.
Am I misjudging the numbers patients on 3x a week dialysis get?? I do 5 hours a day with 15 guage needles with a bfr of 300 and a dfr of 500(sometimes I do 4 hours with a dfr of 600). They original plan was to do nocturnal for 7 hours at night (I still can’t sleep on the machine), but would slow down the bfr to 200-250 and dfr to 300 so I’m unsure if I would see better numbers.
Could some of you share you pre and post numbers pre and after daily dialysis? Since I started I daily I have nothing to compare it with.
Hi Cathy - my opinion is that the numbers are just that numbers, how you feel is what matters. However two numbers did jump out at me - 12:30 and 7:30. You’re only getting 6+ or so hours of sleep a night?!
What about trying less dialysis time/same frequency? Or switching it up - starting the week as is and switching to short runs as the week goes on? In my experience when people are under-dialyzed/poorly dialyzed they experience nausia. How has your appetite been?
You, as a home dialysta, have the ability to experiment. I just wonder if more sleep would help more than more dialysis. Are you sleeping soundly? How is your eating - are you hungry throughout the day? What do you think? The other thing is exersize - how’s it going in that department?
Hang in there I bet there is a solution. Bill (who is at home dialyzing but for some reason can’t sign in or spell check)
Cathy, I wonder what priorities are so important that it is worth going on so little sleep.
would it be possible to do your dialysis earlier in the day so you could sleep uninterrupted during the night? or do dialysis for 8 hrs instead of 5?
more dialysis is always better so doing it more frequently should help your numbers. diet and exercise are important too.
you do have options as a home hemo patient so try and find out what works best for you.
Are those of you who are doing daily dialysis on the same brand machine or different ones? Sounds like you are dialyzing for different hrs per day? Are you saying that some ppl may need more hrs daily to feel more energetic, whereas 2 hrs daily is enough for others? Or could it be that not everyone feels more energetic with daily? Also, do labs always improve with daily?
What is your KT/V and URR with that much dialysis I would think you should be feeling much better. I wonder how much the lack of sleep is playing into how you feel.
I 'm a little over 2 weeks of training and am going home on 23rd…am using NxStage machine and have been dialyzing M-F on training sessions…averaging 2 hours and nine minutes…so far my blood pressure has been improving significantly, appetite is up and no more drag, tired feelings I had when I did 3x a week. Currently, my pump speed is 410, I use 15 liters of dialysate and average only .5 to be taken off per treatment…
By the time I go home will be doing 6x a week…keep in mind that I usually go to sleep early…9-9:30am and get up at 6:30am…
I have some limitations on how fast I can do dialysis because I do not have a partner. They feel it is more dangerous to run at faster speeds due to blood pressure fluctuantions and possible blood loss if a needle slips or something, so they won’t allow daily fast dialysis.
I do think a lack of sleep has something to do with it, but I don’t have a solution. I can’t run during the day as I have a 10 year old who I need to take to school and pick up so I don’t have enough time as with set up and time to get off I need about 7 hours to do a 5 hour run. I would love to be able to run for around 3 hours but it simply isn’t allowed right now. I am hoping that we can check how the 4 hour run compares to the 5 hour run and see it that would be a good compromise, then I can get sufficient sleep!! I feel better when I actually get the 6 1/2 hours sleep, but the problem is that I am also having trouble sleeping. I will be asking for sleeping pills rather than trying to find something that works for the restless legs as I think a sleeping pill may allow me to sleep in spite of the restless legs.
My URR is only around 65%, but that is skewed due to the fact that I never have high BUN’s. It starts around 40 and ends in the teens, so can’t get much lower. What I want to see improvement in is my creatinine numbers which start in the 6’s. I just don’t see how it goes up so fast!! 2-6+ in less than 48 hours amazes me.
Appetite and nausea have never been a problem for me as my BUN has never gotten that high. Even when my creatinine hit 7 my BUN was still in the 50’s. It is the Urea that causes the nausea.
So for all of you, are your “pre” dialysis numbers similar to mine?? I would love to see some pre/post numbers from people to see if my numbers are actually “good”. I know the post numbers are pretty good, just not sure about the pre numbers.
I will be starting on the NxStage on 11/29 without a partner. I have been using the Fresenius H2000K home machine since July at home without a partner but with monitoring and a phone number to call in case of emergency. that was slow nocturnal. I will do the NxStage short daily which appeals a lot more to me since I can do it at my leisure, probably during Dr. Phil through the news since my sessions will only be 2.5 hours.
I believe partner or no partner depends on the center sponsoring the home hemo program.
I agree but instead of Dr. Phil I’m happiest during baseball season, a ballgame is usually as long as my treatment. Cathy what is your unit’s thinking behind the 5 hour minimum run time?
Not clear on how many hours daily dialysis is done. Read where one person said he did it for 2 hrs per day. At 2hrs per day, that equals 12 hrs a week, so that is not any longer than 3 x week dialysis. Do most put more time into daily than 2 hrs per day?
[b]For every patient it will be different, for me I average about 2 hours and 9 minutes and only gaining .5 per treatment…fluid is removed in less than the time I suppose to come off…the remaining time am dialyzing removing the particles in blood…keep in mind that 2 1/2 hours is the minimum recommended…I will be involved in comparison analysis between the 2 and 2 1/2 hours…to see how cleaner the blood is at 2 1/2…
Now a bigger guy will need more hours, but I also think time can be reduced by increasing blood pump speed and using a larger dialyzer like the F80…
But the BIGGEST points in daily short is the way I am feeling…it almost like having my own kidneys…no more tired drag feeling and no more high blood pressure like I had at 3x a week…no more fluid gains causing breathing problems or even fatigue…
When it comes to dealing with kidney disease we take responsibility and put alot of emphasis on our health, invloves alot more than just setting up machine…we have reports to make, diet management, inventory, excercise, good health habits like not consuming alcohol nor smoking, avoiding caffein and so on…also , don’t eat while dialyzing…only something small before treatment…
The way I see it is the first hour of dialysis is the best hour, so the more first hours you can get the better. The reason I think why people need to dialyze for different lengths of time is because of differences in body size. To decide how much to dialyze my experience matches Dr. Scribner’s therory of the Dialysis Product.
The one thing I would add is that in my experience the Dialysis Product should equal one’s weight in Kilograms. I believe Dr. Scribner always thought of typical patients of his day when he thought of dialysis patients - people who weighed around 50 kg. If Dr. Scribner’s Dialysis Product formula has a flaw it is that Dr. Scribner did not consider how large many patients are these days. However my experience is that the Dialysis Product works great if you aim for a Dialysis Product equal to your dry weight in kilos. This also would fit Charra’s results in Tassin where people dialyze 3 times a week for 8 hours - for a Dialysis Product of 72.
This is the formula:
(number of treatments a week) squared, multiplied by (the length of each treatment), equals (the Dialysis Product). So - three, four hour treatments a week would have a dialysis product of 36 [ (3x3)x4=36 ] If you did the same total time but dialyzed six times a week - 6, 2 hour treatments a week - your Dialysis Product would be 72 [ (6x6)x2=72 ]. I dialyze 5 or 6 times a week for three hours so my Dialysis Product is between 75 and 108 [ (5x5)x3=75; (6x6)x3=108 ] which fits me because my weight is around 82kg.
The other thing to remember is this is for people on dialysis with no residual renal function. I think that if your Dialysis Product is equal to or greater than your dry weight you’re getting enough dialysis.
Your unit decides whether you can dialyze without a partner or not, and what modality you can use. My unit feels that short daily dialysis is not safe without a partner so I am not allowed to do it. My strong preference would be to switch to a NxStage machine to greatly reduce my prep and clean up time and do short daily dialysis.
No one ever posted their pre dialysis BUN/creatinine figures so I am guessing that my 6 “pre” creatinines are in a “normal” range.
For those of you on a short daily schedule could you give me an idea of your times and blood flow rates and also your pressures?? I currently run at a bfr of 300 and get arterial pressures averaging -130 and venous pressures of 150-160. I’m wondering how you tell when your pressures are too high indicating a problem with your fistula (just thinking ahead - and wondering why the venous spikes to around 200 for a short time about an hour into dialysis).
For dialysis product calculations, don’t you think total blood volume processed would be important?? Someone who runs at a bfr of 250 is going to get much less dialysis than someone running at 450 for the same number of hours, right??
Cathy, Our unit apparently thinks BVP is important as one of the guidelines for nocturnal patients is that they want us to have a BVP of at least 100 every treatment. I run my father at a blood pump speed of 250 and in 8 hrs I can reach the 100 and be a little over. Dad is 80 and I am sticking with running slower as being “gentler” is suppose to be an advantage in regards to the heart.
For the purpose of deciding how long and how often to dialyze I think you can set aside bfr because you can assume it would be the same under all scenarios. Let me try to explain the way I think of the Dialysis Product.
Think of a person who dialyzes three days a week for three hours at a time at a 300 bfr. Then consider three ways to increase the amount of dialysis by 33%. One: increase each run from 3 hours to four hours. Two: increase the bfr from 300 to 400. Three: dialyze the same but add a forth day. Under all three options total weekly blood volume processed would be the same – it would increase by 33%. However, I believe the third option would have the greatest impact on a person’s well being.
In my experience you get diminishing returns from increasing run length – in other words the impact of increasing run length from 3 hours to 3.5 hours is greater than the impact from increasing run length from 3.5 hours to 4 hours. Consider then - that as you increase run length it lowers the average impact of each minute spent on the machine or your bang for dialysis minute: BDM. To me BDM is key, I want the greatest BDM that I can get. Now it is true that increasing bfr would increase your ‘Bang per Dialysis Minute’ but ones bfr has to be balanced against access - fistula or graft - health.
Here is where I think the Dialysis Product illustrates a key factor – with each additional treatment per week, each minute’s impact is increased. For instance a three time a week schedule implies a multiplier of nine – while a four time a week schedule implies a multiplier of 16; five times a week a multiplier of 25; six times a week a multiplier of 36. Going by the dialysis product this means each minute spent on the machine on a six time a week schedule has four times the impact – four times the BDM – of a minute spent on the machine on a three times a week schedule.
The Dialysis Product is the only thing I’ve seen that matches my own experience. Whether the ratios are exactly right I can’t say but I do think that with each additional day per week spent on dialysis the impact of each treatment increases. I believe this is true from my own experience and I think it can be explained technically by the nature of fluids and the physical constraints of fluid dynamics.