Changed from 5 days to 4 days per week

[cdwbrooklyn]

Yesterday was my monthly visit to my doctor’s office.  I sat down with him to explain to him that my body is getting very tired because I work over 50 hours a week and I’m not getting enough sleep.  I explained to him that I looked at the NxStage dosing calculator and put in my information.  It came up with a chart of how many hours for how many days.  I choose the 4 days a week for 4 hours and 20 minutes each day which equals to 17 hours per week.  I showed him the chart and he read the information.  I told him that it will allow me to get more sleep and I will have Sundays, Tuesdays, and Thursdays off. 

Example:  Monday (on) Tuesday (off) Wednesday (on) Thursday (off) Friday (on) Saturday (on) and Sunday (off)

This will allow me to get some more rest, cook, and clean my house.  My doctor said since I did my research he admired my effort and will allow me on trail bases to see how my results will come out. 

The only thing I was not able to convince him is changing my blood flow from 500 to 450.  I explained to him that it can damage my fistula in the long run.  He told me that there is no evidence that that every happened and don’t want to change my blood flow because the machine is not as powerful as the machine in center.   He’s really not comfortable with me doing 4 days but will allow it because I pleased my case well.  Although, I wanted to lower my blood flow, I’m not really mad about it just happy he allowed me to do 4 days per week. 

If everything goes well, which I believe it will, I can open the doors for other patients as I was told most of them are asking about the 4 days per week method. 
I start on Monday with 4 hours and 20 minutes on the machine which I will it while I’m sleeping.  It will be at least 4 hours and 35 minutes with the pauses.    Next month during this time, I will let you guys know how it went. 

            

[obsidianom]

I think trying 4 days per week doing 17 hours sounds reasonable. I hope it works well for you. Let us know.
Your doctor is ignorant about the fistula not being damaged by the blood speed . Dr. Agar and others have shown how different thier rates of fistula damage and revisions are compared to the US . They RARELY have to do revisions or stents or any repairs. They run blood slow , at under 350. There is no doubt that increased blood speed is the differance. American nephrologists are still in the dark ages compared to other countries. Japan also has seen the same results.
This reminds me of the 1970s when Japanese cars began to really surpass American cars as Americans  at that point were arogant and stuck to outdated practices in car maufacturing while Japan moved ahead by modernizing. They beat us badly for years as we were slow to change.
 The same thing is ocurring in nephrology. We stick to outdated bad medicine while Japan and Australia and New Zealand move ahead of us. Our arrogance again is killing our patients.
I hope after you do well at 4 days per week you can slow down your speed  later . One step at a time I  guess.  Be careful not to go too fast with your fluid removal on fewer days. Spread it out over the 4 plus hours nice and easy.
Good luck.     

[cdwbrooklyn]

I understand what you're saying but I will in time get my doctor to change his mind regarding the blood flow.  Like you said, one step at a time.  I will set the machine up to remove fluid every hour instead of every half hour. 

[obsidianom]

I understand what you're saying but I will in time get my doctor to change his mind regarding the blood flow.  Like you said, one step at a time.  I will set the machine up to remove fluid every hour instead of every half hour.

You are an inspiration as you have been doing this a long time and have a GREAT attitude. Keep it up.

[amanda100wilson]

 I generally end up doing four days a week instead of five.  I go into a mini-depression on the days I have to do dialysis,  and I end up in reality doing every other day..  My Kt/v generally comes out at about 2.16.  I know that it is a discredited measurement method, and I realize that in reality, I am probably not Getting great dialysis and Ai know that I am not if I apply Scribner's formula.  I do 3.5 hours at a BFR of 350, any longer, and I just cannot sit still.  It is all a compromise but I feel ok, even though I know this is not the best for my health in the long term.  Have tried extended but my superficial, and positional fistula prevents me from moving and sleeping. 

[obsidianom]

I generally end up doing four days a week instead of five.  I go into a mini-depression on the days I have to do dialysis,  and I end up in reality doing every other day..  My Kt/v generally comes out at about 2.16.  I know that it is a discredited measurement method, and I realize that in reality, I am probably not Getting great dialysis and Ai know that I am not if I apply Scribner's formula.  I do 3.5 hours at a BFR of 350, any longer, and I just cannot sit still.  It is all a compromise but I feel ok, even though I know this is not the best for my health in the long term.  Have tried extended but my superficial, and positional fistula prevents me from moving and sleeping.

One method to improve your dialysis adaquacy with your every other day would be to increase the dialysate volume and speed. You would probably need the new high speed Nxstage system but it would allow you to keep to 3.5 hours . For example you could run 50 liters at speed of 14.3 liters per hour and be on 3.5 hours . That could in theory get you up to around 2.5 kt/v if you arent too large.  That is every other day. Run your numbers on the on line calculater. You could still do the same time and days but get better dialysis.

[cdwbrooklyn]

I generally end up doing four days a week instead of five.  I go into a mini-depression on the days I have to do dialysis,  and I end up in reality doing every other day..  My Kt/v generally comes out at about 2.16.  I know that it is a discredited measurement method, and I realize that in reality, I am probably not Getting great dialysis and Ai know that I am not if I apply Scribner's formula.  I do 3.5 hours at a BFR of 350, any longer, and I just cannot sit still.  It is all a compromise but I feel ok, even though I know this is not the best for my health in the long term.  Have tried extended but my superficial, and positional fistula prevents me from moving and sleeping.

I've thought the same way but I usally dialyize at night.  I will get on the machine around 11pm and should be off my 5am in the morning.  I have no problems sleeping but I do wake up and become very restless.  I learned to take it one hour at a time.  I get on the machine when I am very tired so I can sleep.  Some days I be on my iPad and end up falling to sleep in the middle of working on something.  It's hard but we are doing it.  I started getting very depressed with the five days because I really did not have any time for myself.  I felt pressured and it was really bothering me.   Now, I'm going to try this four times a week so I can get one day on and one day off. I go at 4 hours and 20 minutes at 500 flow speed.  I'm going to see if I can get it at 450 (sheeh, don't tell my doctor); however, I would as Obsidianom said increase my speed. No worries, you are not alone.  My nurse told me that a lot of patients that are on NxStage are asking to do it four times a week because of the same problem you and I are having.  If you are on NxStage, you can look at the dosing calculator.  It helps to get good dialysis out of the machine.   

Stay strong.

[PrimeTimer]

cdwbrooklyn:  Do you have good news to report? Are things going better for you doing 4 times a week?

[cdwbrooklyn]

Okay, I had to make some changes.  I am still doing it 4 times a week for I have to do it at 4 hours 27 minutes each treatment.  Fraction 32% and blood speed 400 – 450.   This works better for me.  I tried it slower and I did not get good results.  Fraction 38% and blood speed 350 did not work for me.  It’s funny because I thought the slower you do it the better you will get dialysis, well for me that did not work.  I can least say I tried it and it did not work on fraction 38% and blood speed 350.  However, fraction 32% and blood speed 400 – 450 works great.  That’s what my body type needs for me to get excellent dialysis.  I’ve got my fistula checked and it’s doing very well per my vein surgeon. 

This is only my story but may work for someone else. 

[MooseMom]

cdwbrooklyn, you are one of the people here on IHD I have admired the most.  You have such an inspiring attitude that hits the sweet spot; you are a positive person yet you willingly and openly admit that you have rough times, too.

I am very happy that your doctor treats you like an intelligent and well informed patient and allows you to experiment to see what works best for you.

I always enjoy your posts.  Thank you.

[cdwbrooklyn]

Thanks for the kind words Moosemom. 

[PrimeTimer]

Very good, cdwbrooklyn! Thanks for letting us know. Everyone is different and everyone feels differently about their dialysis treatments. I like your "take charge" attitude of your health! Hope the new schedule continues working out for you. Hope your labs look good and most importantly, that you feel well and living life how you see fit. That's the part I am really curious about...how you feel and the kind of things you feel up to doing and if this new schedule makes you feel good or bad, more vibrant or tired, etc, and if having more free time makes you feel good Please continue sharing your results and thoughts on things, it helps to listen to someone with experience and who isn't afraid to try new things and let us know how it goes. 

[cdwbrooklyn]

Very good, cdwbrooklyn! Thanks for letting us know. Everyone is different and everyone feels differently about their dialysis treatments. I like your "take charge" attitude of your health! Hope the new schedule continues working out for you. Hope your labs look good and most importantly, that you feel well and living life how you see fit. That's the part I am really curious about...how you feel and the kind of things you feel up to doing and if this new schedule makes you feel good or bad, more vibrant or tired, etc, and if having more free time makes you feel good Please continue sharing your results and thoughts on things, it helps to listen to someone with experience and who isn't afraid to try new things and let us know how it goes. 

Thanks PrimeTimer for your kind words.  I love it when people can see the positive side in me. It keeps me going to continue to live.  It’s very hard some days as I don’t want to dialyze.  I like the four days a week because it gives me more time to enjoy life.  However, I am running into some problems.  My nurse tells me that one part of my results is perfect better than before.  However, the ktv is only 1.92 and it use to be 2.4 and more.   She is trying to understand what is happening.  She is thinking about putting me on 40L to accommodate the extra day off.   It seems like the slower the treatment goes the worse the results come out.  I thought slower is better but that is not the case with me. 

Now that I think about it, when I was in center and the tech would put the machine to go slow I would get sick.  However, when the machine was put to go fast I would feel a lot better and my results were perfect.  I don’t understand why but the slower method does not work for me.  I am not a fat woman but I do have some extra pounds and I don’t think NxStage is capable of cleaning my blood at a slow speed and/or fraction.  I do feel tired a lot and it’s annoying, however my iron is low and has been that way for 14 years but it does not stop me from enjoying life.

I feel good because I don’t feel pressured when it comes to doing my treatments.  The one day on and one day off works well for me mentally but physically I am still trying to get my balance.   If things don’t work out, I will just go back to my original treatments.  It worked well for me and I had no problems.  Now I am definitely convinced that everyone is different.   Thanks for asking as I will always be glad to share something about myself.   

[obsidianom]

Very good, cdwbrooklyn! Thanks for letting us know. Everyone is different and everyone feels differently about their dialysis treatments. I like your "take charge" attitude of your health! Hope the new schedule continues working out for you. Hope your labs look good and most importantly, that you feel well and living life how you see fit. That's the part I am really curious about...how you feel and the kind of things you feel up to doing and if this new schedule makes you feel good or bad, more vibrant or tired, etc, and if having more free time makes you feel good Please continue sharing your results and thoughts on things, it helps to listen to someone with experience and who isn't afraid to try new things and let us know how it goes. 

Thanks PrimeTimer for your kind words.  I love it when people can see the positive side in me. It keeps me going to continue to live.  It’s very hard some days as I don’t want to dialyze.  I like the four days a week because it gives me more time to enjoy life.  However, I am running into some problems.  My nurse tells me that one part of my results is perfect better than before.  However, the ktv is only 1.92 and it use to be 2.4 and more.   She is trying to understand what is happening.  She is thinking about putting me on 40L to accommodate the extra day off.   It seems like the slower the treatment goes the worse the results come out.  I thought slower is better but that is not the case with me. 

Now that I think about it, when I was in center and the tech would put the machine to go slow I would get sick.  However, when the machine was put to go fast I would feel a lot better and my results were perfect.  I don’t understand why but the slower method does not work for me.  I am not a fat woman but I do have some extra pounds and I don’t think NxStage is capable of cleaning my blood at a slow speed and/or fraction.  I do feel tired a lot and it’s annoying, however my iron is low and has been that way for 14 years but it does not stop me from enjoying life.

I feel good because I don’t feel pressured when it comes to doing my treatments.  The one day on and one day off works well for me mentally but physically I am still trying to get my balance.   If things don’t work out, I will just go back to my original treatments.  It worked well for me and I had no problems.  Now I am definitely convinced that everyone is different.   Thanks for asking as I will always be glad to share something about myself.   

The most important part of the Nxstage prescription is the VOLUME OF DIALYSATE. If you were at 30 for example before at 5 days per week , the total for the wek was 150 . Now at 4 days per week you need to change the daily amount to accomadate the extra day off.  In this case you would need to go to almost 40 per day . So if you didnt increase the dialysate when you dropped a day , you are not getting enough dialysis and that is why the kt/v dropped. Adding time alone wont do it on Nxstage. You have to increase dialysate.

[Simon Dog]

I understand what you're saying but I will in time get my doctor to change his mind regarding the blood flow.  Like you said, one step at a time.  I will set the machine up to remove fluid every hour instead of every half hour.

What do you mean by remove fluid every half hour?   I'm familiar with the UF rate, but not how that translates to your terminology.

[cdwbrooklyn]

Very good, cdwbrooklyn! Thanks for letting us know. Everyone is different and everyone feels differently about their dialysis treatments. I like your "take charge" attitude of your health! Hope the new schedule continues working out for you. Hope your labs look good and most importantly, that you feel well and living life how you see fit. That's the part I am really curious about...how you feel and the kind of things you feel up to doing and if this new schedule makes you feel good or bad, more vibrant or tired, etc, and if having more free time makes you feel good Please continue sharing your results and thoughts on things, it helps to listen to someone with experience and who isn't afraid to try new things and let us know how it goes. 

Thanks PrimeTimer for your kind words.  I love it when people can see the positive side in me. It keeps me going to continue to live.  It’s very hard some days as I don’t want to dialyze.  I like the four days a week because it gives me more time to enjoy life.  However, I am running into some problems.  My nurse tells me that one part of my results is perfect better than before.  However, the ktv is only 1.92 and it use to be 2.4 and more.   She is trying to understand what is happening.  She is thinking about putting me on 40L to accommodate the extra day off.   It seems like the slower the treatment goes the worse the results come out.  I thought slower is better but that is not the case with me. 

Now that I think about it, when I was in center and the tech would put the machine to go slow I would get sick.  However, when the machine was put to go fast I would feel a lot better and my results were perfect.  I don’t understand why but the slower method does not work for me.  I am not a fat woman but I do have some extra pounds and I don’t think NxStage is capable of cleaning my blood at a slow speed and/or fraction.  I do feel tired a lot and it’s annoying, however my iron is low and has been that way for 14 years but it does not stop me from enjoying life.

I feel good because I don’t feel pressured when it comes to doing my treatments.  The one day on and one day off works well for me mentally but physically I am still trying to get my balance.   If things don’t work out, I will just go back to my original treatments.  It worked well for me and I had no problems.  Now I am definitely convinced that everyone is different.   Thanks for asking as I will always be glad to share something about myself.   

The most important part of the Nxstage prescription is the VOLUME OF DIALYSATE. If you were at 30 for example before at 5 days per week , the total for the wek was 150 . Now at 4 days per week you need to change the daily amount to accomadate the extra day off.  In this case you would need to go to almost 40 per day . So if you didnt increase the dialysate when you dropped a day , you are not getting enough dialysis and that is why the kt/v dropped. Adding time alone wont do it on Nxstage. You have to increase dialysate.

Okay, I am going to try that.  I will speak to my nurse as she sugguested I do that.  I'll keep you posted.

[cdwbrooklyn]

I understand what you're saying but I will in time get my doctor to change his mind regarding the blood flow.  Like you said, one step at a time.  I will set the machine up to remove fluid every hour instead of every half hour.

What do you mean by remove fluid every half hour?   I'm familiar with the UF rate, but not how that translates to your terminology.

Instead of taking the fluid off fast(like one hour and a half before treatment is over) the machine takes off the fluid little at a time(like 2kilo instead of 5kilo every half hour).

Hope this help.

[Simon Dog]

Instead of taking the fluid off fast(like one hour and a half before treatment is over) the machine takes off the fluid little at a time(like 2kilo instead of 5kilo every half hour).

Hope this help.

I set the UF on my system so it finishes taking fluid off shortly before my treatment ends, so I get the lowest possible UF rate.

And, I hope you meant .2 and .5 kilo.

[PrimeTimer]

I think I am finally starting to understand that more TIME and VOLUME of dialysate is what gives you good dialysis. I liken it to a kitchen sink full of dirty dishes to be washed. We fill the sink with as much water and soap as we can in order to cover as many of the dirty dishes in it to be soaked and washed. Too little water, too little washing. More water, more "good" washing can be achieved. Just like our blood....more dialysate bath to wash our blood in, perhaps the cleaner our blood is returned to us. And the longer we can have our blood go thru the proverbial "bath", perhaps the cleaner it will be upon returning to our system. I know this sounds like a silly analogy but I understand things better when put into laymen terms and being the care taker and housewife around here, I naturally compare things to my daily chores, such as doing the dishes or laundry. Would be tough to do more than 4 hours at a time 4 days a week but of course, would also be nice to have that extra time to do whatever we wanted, like living this thing called "life". Or...could do less than 4 hours at a time but 5 days a week...ah, decisions, decisions...but the bottom line, we should do what makes us feel at our best! Well...almost...I didn't say eating pizza's and icecream sandwiches are best...

cdwbrooklyn, please continue updating us on your trials and if anything changes for you (good or bad) and what you did about it. I love being able to learn from real-case scenarios. And if it's not too intrusive, am interested in knowing what a typical day is like for you and even how you setup the machine and prepare for treatment and then cleanup while managing a fulltime job. Who knows, maybe there is a better/quicker way I am missing and could learn from. Thank goodness you have experience and can help us newbies! You're an inspiration but you are also living proof of what the rest of us may be able to achieve thru watching and listening to you. You deserve a standing ovation! 

[obsidianom]

Instead of taking the fluid off fast(like one hour and a half before treatment is over) the machine takes off the fluid little at a time(like 2kilo instead of 5kilo every half hour).

Hope this help.

I set the UF on my system so it finishes taking fluid off shortly before my treatment ends, so I get the lowest possible UF rate.

And, I hope you meant .2 and .5 kilo.

The slower the better with UF.  I do the same with my wife. WE go at .25 per hour . I find if I go faster she feels it.

[cdwbrooklyn]

Instead of taking the fluid off fast(like one hour and a half before treatment is over) the machine takes off the fluid little at a time(like 2kilo instead of 5kilo every half hour).

Hope this help.

I set the UF on my system so it finishes taking fluid off shortly before my treatment ends, so I get the lowest possible UF rate.

And, I hope you meant .2 and .5 kilo.

Yes I meant .2 and .5 kilo.

[cdwbrooklyn]

I think I am finally starting to understand that more TIME and VOLUME of dialysate is what gives you good dialysis. I liken it to a kitchen sink full of dirty dishes to be washed. We fill the sink with as much water and soap as we can in order to cover as many of the dirty dishes in it to be soaked and washed. Too little water, too little washing. More water, more "good" washing can be achieved. Just like our blood....more dialysate bath to wash our blood in, perhaps the cleaner our blood is returned to us. And the longer we can have our blood go thru the proverbial "bath", perhaps the cleaner it will be upon returning to our system. I know this sounds like a silly analogy but I understand things better when put into laymen terms and being the care taker and housewife around here, I naturally compare things to my daily chores, such as doing the dishes or laundry. Would be tough to do more than 4 hours at a time 4 days a week but of course, would also be nice to have that extra time to do whatever we wanted, like living this thing called "life". Or...could do less than 4 hours at a time but 5 days a week...ah, decisions, decisions...but the bottom line, we should do what makes us feel at our best! Well...almost...I didn't say eating pizza's and icecream sandwiches are best...

cdwbrooklyn, please continue updating us on your trials and if anything changes for you (good or bad) and what you did about it. I love being able to learn from real-case scenarios. And if it's not too intrusive, am interested in knowing what a typical day is like for you and even how you setup the machine and prepare for treatment and then cleanup while managing a fulltime job. Who knows, maybe there is a better/quicker way I am missing and could learn from. Thank goodness you have experience and can help us newbies! You're an inspiration but you are also living proof of what the rest of us may be able to achieve thru watching and listening to you. You deserve a standing ovation! 

Thanks for you standing ovation as I am at a need for it nowadays.   Anyhoo, I am still trying to balance this 4 days thing.  I’m meeting with my nurse tomorrow to see how we can get this to work.  She is going to play around with the 40L and see what works best.  My fistula is not functioning now.  I did not dialyze for two days now.  I don’t know what I did but I cannot get the blood to come out of my artery button hole.   I’m going to see my surgeon tomorrow to see what’s going on because my fistula was good as of last month when we met.  Problems, problems and problems I don’t mind doing treatments but this buttonhole thing is making me crazy as this to shall pass.

On an original day when there are no problems, I wake up in the morning at 5:30am if I have to make a butch or at 6:00am if I don’t.  I jump in the shower and get dress to go to work.  I leave my house at 7:30 – 7:45am.  It takes me about an hour and fifteen minutes to get to work.  I work from 9am – 6pm.  I’m an Executive Administrative Assistant at JPMorganChase.  When I get off of work, I get home around 7:30-8:30pm should I choose to go shopping.  I relax or cook before setting up my machine at 9:45 or 10:00pm.  After setting up the machine and getting the supplies ready as well as cleaning my buttonholes, I’m on the machine before 11pm.  I record my treatment every half hour until I fall to sleep.  I get up and finish filling out my sheet when the machine is done and the alarm comes on.  I’m usually done around 3:30 – 4pm after taking out the needles and cleaning up the area.  I get about one hour – two hours of sleep.  I try to make up the sleep the next day as it’s my off the machine day.  On the weekends I dialyze either Saturday or Sunday so I can enjoy my weekend.  I go to church on Saturdays all day.  Yes you heard right, all day.  I enjoy it so I don’t mind.  On Sunday, its daughter and mother time if my daughter does not have anything to do.  We go walking around 8am for about 1 hour.   We will sometimes have breakfast at IHop it’s about one and half miles walking distance.   

That’s basically my life for now until things change for the good.  I’m not involve with anyone as of now as my last relationship do not work.  However, I am waiting patiently for someone one else to come along.  I’m not the one to accept anybody to say I have somebody.  I live a peaceful life and don’t have room for drama. 

That’s my life as of now however things could change for the best. 



 

[obsidianom]

Did you try a sharp needle in a new hole? That might have worked and that way you would know if the fistula is ok and it is just a buttonhole issue, or if the fistula itself is a problem.

[cdwbrooklyn]

Did you try a sharp needle in a new hole? That might have worked and that way you would know if the fistula is ok and it is just a buttonhole issue, or if the fistula itself is a problem.

I didn't get the new buttonhole yet but I did try a sharp in the current artery buttonhole and got the same results as the blunt.  I was so surprised so I am going to the surgen tomorrow and from there I will go to my clinic and get treatment as my nurse will start another buttonhole.  The fistula still have the buzzing so I don't know what's going on.  This happened on Sunday during my treatment as I felt pain all through the treatment.  When that happens it usually goes away the very next day but this time it stayed.  Hope it's nothing serious but I will find out tomorrow and keep you guys posted.

[PrimeTimer]

Hope they get your fistula back up and running ASAP for you! My husband is in his first year and seems revisions are common. But it is still a pain for him to leave work to go deal with it. The good part is that his vascular surgeon is next door to his nephrologist so that makes it easy. And so far they have been able to perform angioplastys and we go home and are able to dialyze right away. Dang fistula's! As if we don't already have enough trouble! Hope you are back in business in no time!

cdw, I admire your attitude! You may not understand it right now but you DO have a strength that beams so brightly it rubs off on us. Thank you for your gift because finding you on here is like finding a gift! I am realizing how hard, scary and frustrating this whole DD (damn disease) but it sure helps to be able to come here and be amongst people who can offer a good vibe, a good idea and good talk. Wow, you DO have quite a long day!! But again, if I take it in increments, I might find myself back to enjoying life again too! Right now, I am just pacing myself. Having Fibromyalgia sucks the life right out of me and then trying to be my husbands care partner is hard. I've had to learn what is most important...the laundry getting done today or setting up his machine or ordering supplies or how the apartment looks. Just trying to pace myself so that by the time treatment time comes in the afternoon I won't be burnt out and will have the energy to do it for my husband and enjoy doing it for him. I try to play music we both like and can lose our minds to during treatment. Kind of hard to escape a chair hold you down with needles in your arms. At some point, I'd like to get a second little table to put next to his recliner where we can both play a game or piece a puzzle together or play scrabble. Or learn some exercises I can help him do in the chair to keep his rear end from hurting and getting stiff and sore. Stuff like that. If you ever have any ideas like that, would love to hear them.