I am tired

[needlephobic]

Needlephobic, Richard is right, if you are cramping your dry weight needs adjusting UP until the cramping stops...and if you have some residual urinary function that keeps kicking in your dry weight can be extremely variable. The trick is to see how much you have to lose at weigh in and how long yor session time is...then you will know how much you are going to lose per hour and that also can have a big bearing on things...ie your goal to take off 4 litres might be correct, but if the session is 4 hours your body will just not tolerate 1 litre per hour coming off. Personally, if I get over 500 ml per hour I start to have problems.
So remember...dry weight is variable so your session goal should vary, and too much off per hour even though the goal is correct is not good.

They have adjusted my dry weight over 3 times in the past 3 weeks. The tech that sets up the machine likes to pull to much off> I am not the only person who cramps and feel like  the ladies across from me if she sets there machine it is most sure of they will get cramps I seen one lady in tears she was hurting so bad. I think it is the techs fault for being trigger happy with the machine but i am just tired of hurting being sick weak and over all feeling like crap. If my favorite tech is working she will not take any fluids off and afterward i feel good so in about a hour i be hooked up and if she is working i'll be getting sick. I have told her she don't listen and yes I downloaded the owners manual for my machine and I would change it if the machine was in reach and they would prob chew me out for messing with there high dollar machine. Because I am supposed to be stupid and they are smart and should be not messing with there machine.   

[kidneysblowingchunks]

I HATE it when they set the machine to "Beef Jerky"!

Try to keep your weight stable.

There are some techs in my center that I do not care for. Their "manner" seems sloppy or rushed from what I have seen.

Talk to your charge nurse and ask if you can request that the staff you don't care for not work on you. (name the tech specifically) They have such a list at my center.


If you need help, and can't get someone's attention, use your cell phone to call the center and get the charge nurse.

If you feel warm when you are hooked up, you may be able to get the machine set to 36 deg. centigrade.

[Genlando]

How much fluid are they taking off during your dialysis runs?  Your first goal should be to determine how much fluid that you can have pulled before you develop symptoms.  This greatly varies from person to person.  Some people can't tolerate more than 1-3 kilos at a time; others can stand 5 or 6 kilos.  I can endure about 3 before I have troubles.

Let's say that they want to pull 3 kilos this time, which is the same as last time, when you  'd.  Tell them that you only want 2.5 kilos pulled.  Reduce the amount of fluid pull if you crash during treatment.  Once you can go through a treatment without a crash, then you know the maximum pull that you can stand. 

The tech may try to insist on pulling what they calculate, but YOU'RE the patient, so you are the one in control.    In the US, you get to call the shots on all aspects of your treatment. Make sure that they know that you will sue the center and THEM personally if they refuse to carry out your wishes. 

You need to be proactive here.  Ask them how much fluid they intend to pull BEFORE they start your treatment--every time--and adjust the amount that they set on the machine based on what you know is your maximum.  It's important that you do this before every treatment, because the techs have been trained to pull you to your calculated dry weight--regardless of whether you can tolerate it or not. 

After determining the maximum amount of fluid that you can comfortably have removed during a treatment, you might have to reduce your fluid intake accordingly.  For example, if you can tolerate 3 kilos pulled per treatment, but you gained 4 kilos over the weekend, you'll need to reduce your fluid intake by 1/3 a liter  per day.  Otherwise, you'll build up fluid in your body and damage your heart.

Dialysis sucks (pun intended), there's no doubt about it.  However it can become slightly less sucky if you learn all you can about the process, and get proactive in dealing with the people at your center.  They will always take the default route (which is usually the easiest way for them), unless you speak up.  I'm a live-and-let-live kind of person myself, but I rapidly learned that you've got to speak up in order to get through dialysis. 

[The Lone IT from HM]

 Make sure that they know that you will sue the center and THEM personally if they refuse to carry out your wishes. 

[/quote]

I have been so wanting to hear someone say that!

[needlephobic]

OK went to dialysis today feeling pretty good.They set the goal at 2000 at the end they took 2001 still cramped towards the end of treatment and after treatment but i didn't feel like i was going to    got home and tried to eat lunch couldn't finish it do to starting to feel like crap took nap all day and still feel like crap. I just don't understand it 

[The Lone IT from HM]

Next treatment, go for 1800.  If you don't Cramp up, then try for a bit more.  The problem with feeling so bad after the treatment can have several causes....all of which can be fixed or prevented.  Are they getting you blood cleaned out, are you anemic, are they still taking too much fluids off, are you meds correct.  By the Way, you blood pressure can go way high before it crashes as they remove too much fluid.  So, just because you have High BP, you may not be fluid overloaded.  Most patients on Dialysis are on too much BP medications.

[needlephobic]

Next treatment, go for 1800.  If you don't Cramp up, then try for a bit more.  The problem with feeling so bad after the treatment can have several causes....all of which can be fixed or prevented.  Are they getting you blood cleaned out, are you anemic, are they still taking too much fluids off, are you meds correct.  By the Way, you blood pressure can go way high before it crashes as they remove too much fluid.  So, just because you have High BP, you may not be fluid overloaded.  Most patients on Dialysis are on too much BP medications.

OK if they take fluids off of me my BP drops. If they they don't BP don't drop and i don't feel like crap. I am not on any meds my blood is getting clean according to the report card  so they way i look at don't take fluids off of me just clean the blood

[Genlando]

...Don't take fluids off of me just clean the blood

Lone IT from HM is right, they probably need to pull a little less fluid.  Also, ask them if they could try a UF and sodium profile on you.  Profiles make it possible for the machine to pull fluid off with less cramping.

It's advisable to have the excess fluid pulled off.  If you don't the fluid can build up and cause congestive heart failure and a host of other problems.

[Desert Dancer]

This is such bullshit. If you feel like  every time that tech sets up your machine, it should be freaking obvious that she's pulling off too much fluid.

You do NOT have to put up with this. Borrow KitKatz's big stick and the next time she wants to set your UF goal too high, tell her HELL NO.  You have the absolute RIGHT to challenge and/or refuse any and all aspects of your treatment. Use it! If the techs or nurses cop an attitude about it: TOO BAD. It's your body and your life, and understanding the settings on your machine and how they will affect you is not that difficult.

[Bruno]

NP..Genlando is right...if you are cramping your fluid offtake MUST be reduced until you don't. It may be that your urinary function is taking out a lot of fluid and you don't need to dialyse as much out. Try drinking tonic water, the quinine in it helps keep cramps away.

[needlephobic]

NP..Genlando is right...if you are cramping your fluid offtake MUST be reduced until you don't. It may be that your urinary function is taking out a lot of fluid and you don't need to dialyse as much out. Try drinking tonic water, the quinine in it helps keep cramps away.

What is tonic water?

[The Lone IT from HM]

Tonic Water is mostly used to fix drinks.....or it use to be.  You can buy it in most grocery stores.  A lot of people drink it over ice...and as you pee, you should have no problem with that.  You might find it an acquired taste.

One this to remember, you tell the tech how much to take off.  You still have some renal function, and if they continue to take too much fluids off, they are going to kill what function you are maintaining.

[needlephobic]

went to dialysis this morning and told the nurse and tech don't remove fluids from me they said ok and charted it went in at 62.5 kilos afterwards i was 62.6 came home peed 500 mls and weighed myself afterwards 61.8 kilos and i didn't cramp or feel like i was going to  turned out to be a good day for me so i look at it as long as i am peeing like i am no since on them takeing off any fluids.

[Hazmat35]

GOOD FOR YOU!  You have to let them know "who's the boss".  A Patient has EVERY right to direct their own treatment. 

[KICKSTART]

Just because you are peeing doesnt mean you dont need fluid taking off ..honestly ! Maybe the amount of fluid they are taking off is wrong , but if you dont take anything off i will put money on it you are going to end up in trouble (fluid overloaded in a few days)

[Ken Shelmerdine]

Im sorry but just because you still 'go' doesnt mean you dont need fluid pulling off ! I still 'go' after 7 years but that doesnt mean i dont pull fluid off.

Kickstart it most certainly does if your natural fluid clearance has not been affected and I believe that not enough is done when people start dialysis to establish whether or not this is the case. I've said before that an accurate bvm analysis is the most accurate method of establishing fluid retention. You say you still have output. Have you done a 24 hour collection? If your kidneys still clear 2.5 litres or more then you most definitely do not need fluid removal.

For some reason the NHS kidney protocol can't or won't consider it possible that some patients are having fluid unnecessarily removed. At my first day on Haemo I point blank insisted on zero UF. They thought I was crazy but I got my way. This was 2 years ago but every so often I get the 'you may be holding excess fluid' remarks to which I have to resist.

Anyway I got sick of the 'you don't know what your doing' looks from certain staff and I said 'Ok give me a BVM test' I have had 4 tests which are carried out on the Fresenious 5008 machine over the period of each dialysis  which have shown negative fluid overload. They realise now I was right all along.

[The Lone IT from HM]

I am glad to hear that you felt better after your last treatment, but I also agree that you need to make sure you DO NOT become fluid overloaded.

I asked our Head of Clinical Operations about you feeling  all the time during and after Treatments.  Her reply: yea- we talk about it as Nausea //vomiting. It occurs as often as 15% of all treatments - cause is same as all other six- improper fluid management - ischemia (lack of blood and Oxygen ) to the gut.

Other than just feeling sick, I will let you figure out what other bad thing that might lead to.  Y are going to walk a line herewhere fluids are concerned.  It isn't hard to stay on the line, just a pain in the butt.

[kitkatz]

Have you tried the various setting on the machine in how much is taken off when?  Check into the profiles on the machine.  I set mine to three because I do better with more taken off at the beginning than off the end of the session.

[KICKSTART]

Im sorry but just because you still 'go' doesnt mean you dont need fluid pulling off ! I still 'go' after 7 years but that doesnt mean i dont pull fluid off.

Kickstart it most certainly does if your natural fluid clearance has not been affected and I believe that not enough is done when people start dialysis to establish whether or not this is the case. I've said before that an accurate bvm analysis is the most accurate method of establishing fluid retention. You say you still have output. Have you done a 24 hour collection? If your kidneys still clear 2.5 litres or more then you most definitely do not need fluid removal.

For some reason the NHS kidney protocol can't or won't consider it possible that some patients are having fluid unnecessarily removed. At my first day on Haemo I point blank insisted on zero UF. They thought I was crazy but I got my way. This was 2 years ago but every so often I get the 'you may be holding excess fluid' remarks to which I have to resist.

Anyway I got sick of the 'you don't know what your doing' looks from certain staff and I said 'Ok give me a BVM test' I have had 4 tests which are carried out on the Fresenious 5008 machine over the period of each dialysis  which have shown negative fluid overload. They realise now I was right all along.

Ken a BVM test ?  test? Do you just mean set the BVM? If thats the case i set my BVM every session yes we have the 5008's as well.  The BVM is not an acurate assessment of fluid onboard it is only an indictation. My bvm has dropped dramatically during dialysis but i can assure you it does not indicate i am totally dry , i had fluid on my legs to prove it. It indicates that there may not be much fluid in your bloodstream , but it doesnt mean to say its not in your tissues and that is when you can run into trouble. Which is what i was trying to say , just because you still go and the machine indicates you are dry ,doesnt mean you are , the fluid in your bloodstream is the easiest to remove , but it doesnt mean that its not building up in your tissues and thats when you end up in trouble , fluid on the lungs , around heart etc.

[Ken Shelmerdine]

Kickstart, How do they measure what's in your tissues then?, when there's no evidence of swelling anywhere on the body and BVM shows no negative.

 When you get weighed at the clinic even if you always way yourself with similar clothing there's the issue of how much is in your stomach or how many calories you've taken in over the weekend which can cause a variance in this written in stone 'dry weight' line in the sand nonsense. If there's no test for what's in your tissues except dry weight measurement then at best it is only a maybe.

Is this a good enough reason to slowly destroy your urine output by removing fluid by dialysis?  I've been on HD nearly 2 years now never taking off any UF and I drink as much as I want. My energy levels are the same as any other healthy person of my age group in fact I have never ever had any outward symptoms of kidney failure. Slowly deteriorating kidney function was only detected following a medical 22 years ago (PKD).

Surely I'm not the only kidney patient like this, it can't just be me can it? If there are others like me don't they deserve a more fuller investigation as to  whether or not there's any excess fluid in the blood, tissue or anywhere else in the body before they start destroying possibly a perfect fluid output volume with UF removal in dialysis?

[needlephobic]

Kickstart, How do they measure what's in your tissues then?, when there's no evidence of swelling anywhere on the body and BVM shows no negative.

 When you get weighed at the clinic even if you always way yourself with similar clothing there's the issue of how much is in your stomach or how many calories you've taken in over the weekend which can cause a variance in this written in stone 'dry weight' line in the sand nonsense. If there's no test for what's in your tissues except dry weight measurement then at best it is only a maybe.

Is this a good enough reason to slowly destroy your urine output by removing fluid by dialysis?  I've been on HD nearly 2 years now never taking off any UF and I drink as much as I want. My energy levels are the same as any other healthy person of my age group in fact I have never ever had any outward symptoms of kidney failure. Slowly deteriorating kidney function was only detected following a medical 22 years ago (PKD).

Surely I'm not the only kidney patient like this, it can't just be me can it? If there are others like me don't they deserve a more fuller investigation as to  whether or not there's any excess fluid in the blood, tissue or anywhere else in the body before they start destroying possibly a perfect fluid output volume with UF removal in dialysis?

I am just like you I tried to explain if they take just a little bit of fluids i cramp and feel like I am going to  so past 2 treatments they didn't take any off and i felt good not sick or cramping and i come home and pee out what they would have taken off and im good to go. So I understand you 

[KICKSTART]

Ken i wish i had the answers for you , its partly my experience and partly the facts ive been given. I can say there does not need to be any evidence of swelling to say there is no fluid there , because you cannot see what is around your lungs and heart and this must be true from the amount of people that end up in hospital not being able to breathe. I had no visible swelling but ended up in this situation, because the fluid wasnt visible and for exactly that reason! . I can understand what you are saying in that you 'go' a decent amount, but cannot for the life of me figure out how you dont need to pull fluid off ! (and how you can drink what you want ? this is incredible in the D world ..isnt it ? ) I dont have any explanations only experiences and info given by the renal team. I appreciate all this dry weight business is just a guessing game and have always thought so, how does anyone know if you put on a few pounds here and there or lose them for that matter. While this seems to work for you ..great , but i wanted to warn others that they should be aware that fluid can be building up inside without notice till ..bam you are in trouble , it is more of a gradual thing that creeps up on you over several weeks. Just my  worth 

[needlephobic]

when i go in for d they check my breathing my heart and my legs and arms ect ect I do not retain fluids I just pee alot so when they do take fluids off i cramp and get sick since they are taking it off there and i go home and pee that means too much fluids be taken off by them and me I am a small person so there is no need to take fluids off just a little amount and i get sick

[Ken Shelmerdine]

when i go in for d they check my breathing my heart and my legs and arms ect ect I do not retain fluids I just pee alot so when they do take fluids off i cramp and get sick since they are taking it off there and i go home and pee that means too much fluids be taken off by them and me I am a small person so there is no need to take fluids off just a little amount and i get sick

Needlephobic
I think you did right .Good for you. You must always insist from now on that they don't remove UF. Not even to compensate for washback because beleive me fluid removal by dialysis will very quickly ruin your ability to remove it naturally.

I'm so glad I've heard this from you I was beginning to think I was the only one.

To all who are viewing this thread please believe that I am not trying to make a case for no fluid removal for everyone. I fully understand that many dialysis patients present with obvious fluid overload and it's removal is life supporting. As discussed on this thread there are processes which can determine without too much doubt that a patient has normal fluid output which are not used as a matter of course.

Why does the medical profession routinely ignore this possibility?
Why is there this attitude that  kidney failure always means that without exception you must be unable to clear some or all fluid naturely?

 Why do new patients who show no sign of overload have to go for weeks suffering extreme adverse events like cramps and crashing when all this could be prevented by proper intial investigation which is available but not utilised?

And finally how many patients  have been outrageously short changed by years of fluid removal which has now destroyed a once perfect and natural output?   

[The Lone IT from HM]

Why does the medical profession routinely ignore this possibility?
Why is there this attitude that  kidney failure always means that without exception you must be unable to clear some or all fluid naturally

Why? because very few Doctors take enough time to look past the charts for each patient.  That is why, when I see a doctor, they spend more time answering my questions, than me answering theirs.  I am of the opinion that medicine runs on percentages instead of personal treatment.  "You appear to have this, so we will treat you this way."  Doesn't work for me.