What is your preferred UF profile to use?

[RichardMEL]

G'day all,

I've been having a few issues lately with dreaded cramp and other scares so have been playing with a few different UF profiles in the machine (with the nurses in the unit of course) trying to figure out the best one for me.

So yeah I tried profile 6 for awhile (it starts high for 30 mins, then down to 100 for 30 mins, then stepa down in increments), and profile 3 which again goes down in steps, and lately profile 1 (starts high and slowly goes down through the treatment).

I've had problems when trying to take off too much in the last hour or two so I have been trying to take off more at the start so there is less left at the end.

Does anyone have preferences for profiles to use?

[angieskidney]

I have only tried #2 profile as when I said I wanted to try one when I came in heavy she said, "Okay let's do #2"... I haven't tried any others or really looked at them as I have been doing okay.

[kitkatz]

I will use profile #3 when I have a lot to take off.

[Zach]

I too use UF profile 3.

I also use the sodium variation (SVS)--start at 140 (14.0 conductivity) for the first 3 hours of treatment, then it drops to 136 (13.6 conductivity) for the last hour and a half.  I think that setting is called "step" and you fill in the desired sodium level to start and finish.

[angieskidney]

I too use UF profile 3.

I also use the sodium variation (SVS)--start at 140 (14.0 conductivity) for the first 3 hours of treatment, then it drops to 136 (13.6 conductivity) for the last hour and a half.  I think that setting is called "step" and you fill in the desired sodium level to start and finish.

I use that too but I don't actually understand it. I just do what they tell me to as I am inclinic.

[tamara]

I too use UF profile 3.

I also use the sodium variation (SVS)--start at 140 (14.0 conductivity) for the first 3 hours of treatment, then it drops to 136 (13.6 conductivity) for the last hour and a half.  I think that setting is called "step" and you fill in the desired sodium level to start and finish.

I use that too but I don't actually understand it. I just do what they tell me to as I am inclinic.

Well Angie, Ask away until you do understand it, just cause you are in clinic no excuse Learn About it GIRL!

and then YOU GO GIRL !   

[angieskidney]

I too use UF profile 3.

I also use the sodium variation (SVS)--start at 140 (14.0 conductivity) for the first 3 hours of treatment, then it drops to 136 (13.6 conductivity) for the last hour and a half.  I think that setting is called "step" and you fill in the desired sodium level to start and finish.

I use that too but I don't actually understand it. I just do what they tell me to as I am inclinic.

Well Angie, Ask away until you do understand it, just cause you are in clinic no excuse Learn About it GIRL!

and then YOU GO GIRL !   

Thx Tamara! IT is hard to ask questions in my unit because they are understaffed and therefore don't really like questions asked. I get intimidated easily and even asked the one nurse after asking a question and she didn't answer but more or less just grunted, I asked, "Am I allowed to ask questions? It is the only way I can learn and I want to learn!"

Does anyone else have experience with a unit where they really don't seem to welcome questions? (some of my nurses do but most of them are always at the hospital unit).

[renal30yrs]

At least we have all these options wth profiles.  In the old days we only had one option, one that made you very sick and cramp a lot.

[tubes]

#3 for me.

Does anyone else have experience with a unit where they really don't seem to welcome questions? (some of my nurses do but most of them are always at the hospital unit).

My nurses usually answer all questions....except.....when I mention something about IHD.  Some of them don't like that I come on here and then go to them and ask about what I read.  One doctor impeticular.   

[goofynina]

#3 for me.

Does anyone else have experience with a unit where they really don't seem to welcome questions? (some of my nurses do but most of them are always at the hospital unit).

My nurses usually answer all questions....except.....when I mention something about IHD.  Some of them don't like that I come on here and then go to them and ask about what I read.  One doctor impeticular.  

They probably dont like you asking them because they probably DONT know the answer

[tubes]

#3 for me.

Does anyone else have experience with a unit where they really don't seem to welcome questions? (some of my nurses do but most of them are always at the hospital unit).

My nurses usually answer all questions....except.....when I mention something about IHD. Some of them don't like that I come on here and then go to them and ask about what I read. One doctor impeticular.

They probably dont like you asking them because they probably DONT know the answer

I think you are right goofynina.  I think they all need to come on here to become as informed as we all are.   
They might learn a thing or 20. 

[jbeany]

My nurses don't mind questions, thankfully.  They just don't always know the answers - nobody else at my center seems interested in asking. 

I think I'm still on the regular UF profile that takes off fluid on a constant level.  They have finally got me at a proper dry weight, so this one seems to be working.  I haven't crashed or cramped the last two sessions in a row - which is pretty amazing for me!

[RichardMEL]

My unit is pretty good with questions. I think I annoy them in a way because I try and take an active interest in my treatments and stuff like blood test results, and what it might mean etc... I do know they apprieciate that I do take an interest in my own well being - I guess because if I understand more about what is happening to me then I will be motivated to do the right thing for me.. which hopefully means less work for them from session to session (eg: if I drink less my chances of cramp or crash are less). Some are better than others of course.

I have one nurse who is just the best and I adore her and am always happy when she is on. Not only does she answer any and all questions I ask.. she actually takes an active interest in her patients and how they are going. An example - at today's session I walked in and she said to me "I just checked your latest bloods and your Aluminium is a bit high.. we need to check that." and she has taken an active interest in my bloods and recommending options for me to pass back to the doc and she helps with things like explaining the profiles and stuff.

I guess though we are lucky as we only have 10 or so stations and 4 staff on at any one time, so usually they can have a few minutes to answer questions or even chat.. specially while putting you on or taking you off.

Actually I love the people in my unit. I have declared I shall take them all to dinner if/when I get a transplant and can be out of there hopefully for a long, long time!

[angieskidney]

My nurses usually answer all questions....except.....when I mention something about IHD.  Some of them don't like that I come on here and then go to them and ask about what I read.  One doctor impeticular.   

Ya same here. But it isn't the doctor but the nurses for me. When I mention things i have read here (I have been doing that a LOT lately!!) they don't like it because I am questioning how they do things

[thegrammalady]

I'm just a bit confused (my kid's would say it's a lot more than a bit) everyone keeps talking about the center setting up the machines, sure they set them each treatment but they should be setting them to your doctors specifications. If I have problems they let the doctor know. The first time I crashed it was because they pushed my dry weight. Doctor yelled a lot at that one. 

I'm using profile 4, which is what the doctor specified

[Zach]

... they should be setting them to your doctors specifications. If I have problems they let the doctor know. The first time I crashed it was because they pushed my dry weight. Doctor yelled a lot at that one. 

You're absolutely right.  No confusion there!
 

[angieskidney]

I'm just a bit confused (my kid's would say it's a lot more than a bit) everyone keeps talking about the center setting up the machines, sure they set them each treatment but they should be setting them to your doctors specifications. If I have problems they let the doctor know. The first time I crashed it was because they pushed my dry weight. Doctor yelled a lot at that one. 

I'm using profile 4, which is what the doctor specified

Some dialysis units aren't as good as others. My Nephrologists are laid back. I WISH they would yell! It would make me feel a whole lot better about the care.

[Rerun]

Today I asked what my UF Profile was and they said "we don't use any?" 

They admitted they have 1-4 but they use "regular" which is even all the way through.

[AlasdairUK]

I use a profile where it takes the most of at the start and decreases at a constant rate throughout leaving the least to come off at the end. I always aim to take off less then 400mls in the last hour.

[angieskidney]

I use a profile where it takes the most of at the start and decreases at a constant rate throughout leaving the least to come off at the end. I always aim to take off less then 400mls in the last hour.

That is how mine is set as well.

[RichardMEL]

I use a profile where it takes the most of at the start and decreases at a constant rate throughout leaving the least to come off at the end. I always aim to take off less then 400mls in the last hour.

I think that is profile 1, which is what I like to use now if I am more than 2kg over when I weigh in.

I absolutely agree that having < 400ml/hr in the last hour is a great help.

I seem to be able to tolerate more being taken off in the first couple of hours but if I need more than 500-600 in the last hour and I am a bit heavy that causes trouble.

Another hint I got was to have some jelly beans with me and take a couple at the 2 hour to go mark, and again at the 1 hour to go mark. The sugar is aparently helpful. It worked well the other day. Luckily I am not a diabetic!!

[thegrammalady]

Today I asked what my UF Profile was and they said "we don't use any?" 

They admitted they have 1-4 but they use "regular" which is even all the way through.

ask your doctor. The center doesn't get to make the decision. If the doc doesn't have a preference WHY NOT??.

[angieskidney]

I use a profile where it takes the most of at the start and decreases at a constant rate throughout leaving the least to come off at the end. I always aim to take off less then 400mls in the last hour.

I think that is profile 1, which is what I like to use now if I am more than 2kg over when I weigh in.

I absolutely agree that having < 400ml/hr in the last hour is a great help.

I seem to be able to tolerate more being taken off in the first couple of hours but if I need more than 500-600 in the last hour and I am a bit heavy that causes trouble.

Another hint I got was to have some jelly beans with me and take a couple at the 2 hour to go mark, and again at the 1 hour to go mark. The sugar is aparently helpful. It worked well the other day. Luckily I am not a diabetic!!

I have been having Jelly Belly's which also help me not be so thirsty toward the end

[RichardMEL]

Down here, or at least with my unit, the nurses make all the decisions regarding profiles, dry weights etc. The docs might request say a low calcium bath or whatnot, but in general they really leave the day to day stuff to the nursing staff, and fortunately for me, most of the nurses listen to my requests or comments and we sort of work on it together... So I can say if I want a profile or not, or what pump speed and so on. Sometimes even the UF total is up to be negottated.. usually if I have taken off too much or I want to modify the washback a bit (if I am going to have a 2nd drink or not).

I like my unit. they rock!

[angieskidney]

Down here, or at least with my unit, the nurses make all the decisions regarding profiles, dry weights etc. The docs might request say a low calcium bath or whatnot, but in general they really leave the day to day stuff to the nursing staff, and fortunately for me, most of the nurses listen to my requests or comments and we sort of work on it together... So I can say if I want a profile or not, or what pump speed and so on. Sometimes even the UF total is up to be negottated.. usually if I have taken off too much or I want to modify the washback a bit (if I am going to have a 2nd drink or not).

I like my unit. they rock!

Really? You can modify the washback (aka: rinceback or runback)? I didn't know that. Mine is always set to 400ml no matter what.

Another thing I cannot change (I mean the machine allows it but ..) is the temp