I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: needlephobic on November 06, 2010, 07:25:40 PM
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I am so tired of dialysis. I am tired of the cramps tired of feeling like I am going to :puke; Everytime i go in that one tech that hooks me up takes to much fluid off of me and my BP drops I cramp and feel like crap. If the other tech is working she comes over and adjust my machine so it won't take the fluids off. I still pee alot so there is no reason to take the fluids off. She just gets in a big hurry to get me in and out that it puts them behind cause I cramp and BP falls and i feel like I am going to :puke; grrrrrrrrrrrr I want to feel like i did before all this happened
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im so sorry.. This is not how your suppose to feel. I know there's an adjustment period, but i still think (and it seems obvious in your case) that there IS a difference in "who" is setting you up. They need to take everything your going through and work better with it. Hubby only had a few adjustments, and only rarly now cramps, but danged if that what just the worst ever for both of us ALL night long. I deeply hope that this will change for you real soon ...as in nOW!
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So, you're made to feel like crap because a tech can't be bothered to do her job properly??? What's wrong with this picture??
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Complain to your neph and anyone else who will listen. You should not have to put up with a tech who really isn't doing their job. They work for you, not the other way around!
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I hate going to dialysis if that tech is there it seems like everytime she sets up the machine she takes to much fluids off. I tell her not to and she tells me I am over my dry weight and has to take it off. The tech I like comes over from her section and looks and see that there taken to much off and stops it she know me well and hates to see me cramp up and get sick when BP falls. There has been many times I have spent a extra hour setting there as they try to get BP up or getting moved around so they can get other people in. One time i spent a extra hour and 30 mins waiting for BP to rise and no tech no nurse anywhere near me just alone setting there feeling like crap. its like am i worth it to be going through this :puke; or are they just in a hurry to get off on time. sorry for all the ranting I am just tired of being tired and sick> Neph doesn't listen to me seams like nobody but one nurse and 2 techs no not to pull of fluidss
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I do not know what kind of clinic you go to. I go to a Fresenius and they have to tell us how much fluid is going to be removed and it is our right to disagree with them. You also have the right to request a conference to discuss your treatment. You also have the right to refuse treatment from a tech that is not competent. Don't worry about stepping on their toes, just wear your biggest boots :rofl;
don'
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I do not know what kind of clinic you go to. I go to a Fresenius and they have to tell us how much fluid is going to be removed and it is our right to disagree with them. You also have the right to request a conference to discuss your treatment. You also have the right to refuse treatment from a tech that is not competent. Don't worry about stepping on their toes, just wear your biggest boots :rofl;
The clinic i go to use to be a fresenius but now privately owned by the I guess you would call him the
head neph and his partner my neph they are into for the money. My neph always has a fake look on his face like he cares but don't I asked him for something for my restless leg prob he didn't say a word his partner walks in like a super star he makes a grand entrance waving and saying as loud as he can hello everybody as he waves his hand I am like please. These people don't listen so it gets frustrating only the one nurse and the 2 techs i like that deal with me listen
EDITED: Fixed quote tag error- kitkatz-Moderator
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Talk to the charge nurse, your nephrologist, and the manager of the unit. Get in there and make some noise--no reason to be passive since these people are getting paid for your care.
Stay away from salt.
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needlephobic, I really feel for you, start to kick arse, get your treatment sorted out. Talk to Kickstart she will give you some tips. Probley get you kicked out the unit. Only joking KS
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Someone mention my name ? All i can tell you is LEARN all about your machine , then take control ! I am now left to do my own settings, i take off what i want. If part way through i feel :puke; i stop the machine from pulling fluid off for a while. Basically i alter the machine all the way through my treatment to suit me ! and its been the best option yet , that and coming off HDF to go on HD. 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. One thing i can suggest , although its not the best solution tbh is to take a drink in with you , then if your bp drops and you have the horrible nurse on , have a drink ..not much say 100-200mls and that will bring your bp up a bit quicker :2thumbsup; But the best answer is to learn about your machine and its settings .
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My guess is techs don't make a lot of money so they don't really care about what they are doing.
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Do you have PAs? We have 2 and see them every week. Both of them are great. They can write scripts and make decisions regarding your care.
Those techs should have a better attitude. In this economy they are darn lucky they have a steady job.
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I feel so bad you. Do you not have any choice where you have dialysis? Do you use a bed or a chair? I used to cramp a lot when I started dialysis but the nurses and techs worked hard to eliminate that. Sitting in a chair helped me as well as we have the choice. I also have leanred to control my machine for the times when the place is very busy.
It is important to take the liquids off but a lot can be done to mitigate the problems you are having. Maybe your personal doctor can help you get their attention.
This situation does not need to exist. I live in the UK where we are in a hospital with nurses and techs and doctor available. In the states in Florida on holiday, I had a small bit of the same problem you are having. However, I was able to talk to the powers and get the situation corrected.
Fight them!
Good luck
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maybe you should have the dr lower your dry weight, after all it's really for the most part a wild ass guess. and next time the tech says no, you're over your dry weight and we have to take it off...speak up loudly, and tell he that's not her call, it's yours and she's only to take this much. and keep making noise until she does it your way. if i visit a new clinic i tell them what to take. at my clinic they ask.
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I'm sorry to hear you're having such trouble.
Can you cut your sodium intake down any further? Keeping my daily sodium intake under 1,000 mg has made a big difference in both my blood pressure and my fluid retention.
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The thing is If they take fluids from me my BP will fall and i feel like crap if they don't take fluids then I am ok no BP drop and i feel find it makes me wonder how much kidney function i have or is that have anything to do with it? They have ajusted my dry weight many times do to gaining weight somehow or there scales are wrong. So I really don't understand whats going on with me. Been at this alone since starting this crazy journey and found this site and found a lot of answers here I am just tired of feeling like crap on the days i have dialysis when they take too much off
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NEEDLEPHOBIC: Is it possible for you to switch to peritoneal dialysis? I was fortunate to have my nephrologist's support to do this and it's done at home so YOU're in charge. I wasn't needle phobic before my ESRD but, like most of us here, have had too many bad experiences with needles and blood drawing since then. This is another reason why I am doing well on the PD -- somewhat less invasive. Hope to hear that you're doing better. VERA
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NEEDLEPHOBIC: Is it possible for you to switch to peritoneal dialysis? I was fortunate to have my nephrologist's support to do this and it's done at home so YOU're in charge. I wasn't needle phobic before my ESRD but, like most of us here, have had too many bad experiences with needles and blood drawing since then. This is another reason why I am doing well on the PD -- somewhat less invasive. Hope to hear that you're doing better. VERA
I have thought about doing PD for sometime now just don't have the room for all the supplies my self caths take up to much room. the self caths are for peeing since my bladder can't empty it all so don't know I am scared to death of needles the tech who takes to much fluids off of me is known to screw up fistulas seen her mess one up by stupidity she ask the lady if she wanted a pillow she said yes so she lifted the arm with the needles in it and blew the fistula she was to lazy to go look for one. I bring my own pillow with me.
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maybe you should have the dr lower your dry weight, after all it's really for the most part a wild ass guess. and next time the tech says no, you're over your dry weight and we have to take it off...speak up loudly, and tell he that's not her call, it's yours and she's only to take this much. and keep making noise until she does it your way. if i visit a new clinic i tell them what to take. at my clinic they ask.
ummm surely lowering the dry weight is the exact worst thing to do?! np is already cramping and feeling ill which suggests too much fluid is being taken off - lowering the dry weight would make them want to take MORE fluid off, and he already still has reasonable output. I'd say raise the dry weight OR just put in a order to take the usual 500ml rinseback amount out and no more and see how it goes.
If they insist on taking fluid, I'd request a BVM/crit line (whatever you want to call it) to profile how well you're refilling and get a much more accurate idea of how "wet" or "dry" you are. That will also give a good indication of where your dry weight really should be set.
Just my two cents.
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Helloooooooooo. You're the patient. If a tech takes off too much fluid, then complain. You don't have to put up with that. That's why I went with PD, so I can be the one in control.
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I am sitting at work, putting on my numbing cream, and taking my anxiety pills, before I leave for Dialysis.
I'm am sitting here, beating my self in the head :Kit n Stik; and making myself sick :puke; just thinking about going.
I thought about it over the weekend and just decided to give up and go without Dialysis anymore and take my chances!!!!!!! Work is starting to become a major problem, and I can not afford to wait 5 months for disability to kick in. Hell, even then I can't afford LIFE. :banghead; :sos;
But at the last minute, I said SCREW IT! Now, I'm getting ready to go! I HATE DIALYSIS!!!! And everything that goes along with it!!!!!
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You are in a place that we all go to from time to time. Do not give up on Dialysis it is keeping you a live, yes we all hate dialysis.
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Look, you said at the very start that you still pee allot. There are TWO reasons for Dialysis, 1) to remove the poisons from your blood and 2) remove any EXCESS fluids. There is a major problem brewing if they continue to remove to much fluids. Your DRY weight should not be a wild ass guess, and it is a bit of a moving target. The nurses I work with would have a real problem with your treatment. You have got to take control of this. You need Dialysis to live, you do not need Dialysis to kill you off an inch at a time.
know what you weighted out at the end of the last treatment, keep exact track of what fluids you take in after each treatment, track how much you pee. you will know about how much needs to be removed for your next treatment. Pain in the ass, you bet....better than feeling like crap during and after each treatment, for sure.
Your Body, Your Treatment...You take control
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But at the last minute, I said SCREW IT! Now, I'm getting ready to go! I HATE DIALYSIS!!!! And everything that goes along with it!!!!!
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I couldn't agree with you more....I hate dialysis and all the problems that go along with it. The only thing worse than dialysis is NO dialysis. When I missed 2 sessions this past winter due to blizzards, I felt SO much worse. I didn't gain that much fluid, but all the toxin build up made me so sick. So that's what keeps me going...knowing how much worse I'll feel if I don't......
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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.
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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 :puke; 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.
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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.
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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 :puke;'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.
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Make sure that they know that you will sue the center and THEM personally if they refuse to carry out your wishes.
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I have been so wanting to hear someone say that!
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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 :puke; 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 :banghead;
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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.
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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
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...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.
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This is such bullshit. If you feel like :puke; 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. :Kit n Stik; 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.
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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.
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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?
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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.
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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 :puke; 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.
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GOOD FOR YOU! You have to let them know "who's the boss". A Patient has EVERY right to direct their own treatment.
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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)
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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.
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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 :puke; 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.
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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.
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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.
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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?
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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 :puke; 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
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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 :twocents; worth :2thumbsup;
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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
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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?
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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.
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Ken i do get what you are saying but would like to add some people present with UN-obvious fluid overload and are not educated enough to know the difference (not their fault its the doc's) I also agree what suits one doesnt suit all, after all im the worlds best advocate for that ! I cannot tolerate 4 hours of D , but do it i must. I usually just stop the fluid pull after three & a half. I have NEVER once been asked if i still pass fluid and i cant recall hearing anybody else get asked ! In fact Nursey Know-it-all was so busy lecturing another patient the other day on fluids , i nearly lost my rag with her (but didnt) She was telling her blah , blah , blah its not that difficult , its mind over matter , go suck ice cubes, its been -1 here brrrr . I wish she'd go suck ice cubes !
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While she was doing her lecture, how many of the patients was she pumping Saline solution into…for whatever reason? You know, that bag of salty water that makes you so thirsty that you have no mind, so it don't matter. The nurses have no idea that they are the major cause of noncompliance patients…if you watch closely, you will see them do things to/for the patients that set the patients up to fail.
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Lone IT , the only people that get pumped full of saline are the ones that have reached the point of no return and crashed. Having said that , they also show no interest in learning about anything. One guy crashes regular and is by no means unintelligent and i have tried in the most basic of terms to tell him the warning signs but he is just not interested ..so what can you do? They leave well alone with me now ..it wasnt without a fight i can assure you . But i got the measure of most of them pretty quickly and quickly realised i wasnt handing over the reins to anyone . I will even challenge my neph ! They are only people at the end of the day , this is our lives , not theirs !!! I am labelled as non- compliant , but i dont have to kiss ass because im not going for a transplant !
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Lone IT , the only people that get pumped full of saline are the ones that have reached the point of no return and crashed. Having said that , they also show no interest in learning about anything. One guy crashes regular and is by no means unintelligent and i have tried in the most basic of terms to tell him the warning signs but he is just not interested ..so what can you do? They leave well alone with me now ..it wasnt without a fight i can assure you . But i got the measure of most of them pretty quickly and quickly realised i wasnt handing over the reins to anyone . I will even challenge my neph ! They are only people at the end of the day , this is our lives , not theirs !!! I am labelled as non- compliant , but i dont have to kiss ass because im not going for a transplant !
Well said KS! :clap; It's just a pity that there doesn't seem to be many patients who are educated about their renal condition. There is a lady at my clinic who like me has PKD. She drinks as much as she wants and appears as fit and well as I am.
She is always at or below her dry weight and yet they still take fluid off! Obviously I don't know fully her details but I've explained to her that there are processes for a more accurate indication of fluid measurement, but I may as well talk to the Great Wall of China.
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I too, have PKD and at times, I can Pee like a race horse. Other days, it's like squeezing water out of a rock.
My Nephs assistant told me just yesterday, that even though you have RENAL FAILURE, doesn't mean that it will prevent you from peeing. Everyone is different, but dependent upon your individual condition, you might urinate normally, or not.
I went in yesterday for Dialysis after the weekend and I was 3.3 KG over my dry weight. THAT WAS WAY high for me for a 2 day weekend, but my dr., was fine with it. Generally after 2 days off, I come in at 1.5 KG over my dry weight.
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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.
I agree My neph doesn't listen to me at all goes in one ear out the other. Had a bad day today at dialysis they took 800 off when i told them no need to cause i will pee it out when i get home. Nurse told me it don't make any since to me we will take 800 and when you are almost done we will give you the 800 back if that is the case why take it off in the first place. Well I cramped and got dizzy bp dropped not i feel like crap my head hurts afraid to eat cause when i do i will feel like :puke; and to top it all off come home feeling bad and was told my mom passed away this morning will the bad luck ever end?
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So sorry to hear about the loss of your mum, Needlephobic. I don't spend a lot of time here anymore as I am absolutely run off my feet with work but in relation to your fluid removal you need to put your foot down with your centre and stop them taking off more fluid than you need taken off. I have been on dialysis two years now and still take off little or no fluid. Initially they centre where I trained took off way too much fluid and I felt disgusting all the time. Now I am at home doing my dialysis I take off little or no fluid and I feel terrific. Take control. It is your life, your body. There are too many "Oops's" in the medical profession. No one knows your body better than you do. They go on generalities rather than individual patient history and while that might work for them, you are the one that has to endure the result of the mismanagement of your treatment. I don't let anyone, including my neph who I think is terrific, tell me what to do if I am not comfortable with it. If I make a mistake then so be it but I won't be another of their mistakes. Tell THEM how much fluid you want to take off. I say it every time I come on here. I wish more of you guys could do your dialysis at home. In Australia we don't need a partner to do dialysis at home but even when I went to the clinic I still put my foot down about how much fluid I took off. I know how hard it can be though. I went away on a holiday a few months back for a week and came home after the first dialysis session. The nurse told me that she would not do my dialysis unless I took at least 1500 in fluid. I told her I wouldn't do it and after 20 minutes of bickering I walked out and flew straight home. If all else fails, get Kit's bat out :Kit n Stik;
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Sorry to hear of your loss :cuddle;
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(Sorry for your loss)
I have at least the fluid intake/removal down to a T. When I walk in they ask me what I want to take off... not the other way around. I have been right every single time. They add 500ml on for the rinsing but I checked the history on my machine and they put back only 220ml and I should know how much I drank and how much I urinated. I am the one doing it. :rofl;
I have to add that I have seen a decline in my urination since I started on D. The neph says that it happens to "most".... I don't like it at all.
D
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Needlephobic so sorry to hear about the loss of your mother. :cuddle; As if you are not going through enough as it is.
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This has been an awful year for losing moms. :'( I am so sorry.
I am so grateful for this thread! The whole concept of fluid removal always has baffled me...how do they know how much to take off? Answer, they don't KNOW...they GUESS. This is an area where we really do need to be educated about our individual needs/condition. I will be sure to do whatever it takes to preserve my natural peeing function while at the same time making sure there is no "hidden" fluid. At my well-woman appt a few weeks ago with my gyn, she checked my heart and lungs and specifically told me that there was no fluid in those places, so I guess they CAN tell if there is fluid buildup instead of just guessing.
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Needlephobic, I am sorry to hear about your Mom...