how much do people

[jonn r]

so here is a question for you all.....how much do you get taken off each time you go......i was getting 4.0 off each time but i have been raised to 6.0.....is this too much or do you think its ok?

[aharris2]

holly shit john 6.0? wow the most i get taken off is 2.5 although about a yr ago i use to get 4 or 5 taken off. it all depends but they told me if i didn't drink less i was going to die of a heart attack.
so i guess is up to u buddy.

Rolando

[goofynina]

so here is a question for you all.....how much do you get taken off each time you go......i was getting 4.0 off each time but i have been raised to 6.0.....is this too much or do you think its ok?

When i was in-center (now i am on PD)  they would TRY to take off 5 - 6 kilo's but most times i'd end up cramping and crashing and all that "fun" stuff, needless to say, they couldnt take that much off anymore so that is why i kept gaining weight, from all the fluid i was accumulating, ugh 

[mallen]

Interesting replies. When I went to the center, on Thursdays and Saturdays I would take off in the range of 4 to 5 kilos. On Tuesday, it would be about 6.5. If I had to take off more, I would do it on Thursday. I, too, would crash. They kept raising my dry weight, saying "you must be gaining weight". What bullshit!! I won't bore you with blood pressures of 70/40 etc.

Things changed when I started using the NxStage. I dialyze 6 days a week and my daily gain is between 0.5 and 1.2kg, which I can easily take off. I have dropped my dry weight 2kg, from 86.5 to 84.5 in two weeks, without any problems. My standing BP at the end of the session is 124/77. I give myself two x 200mL "flushes" during dialysis and my pressure never drops below 110. Also what is very interesting is I no longer have this craving to drink something. I drink what I want, when I want - I don't feel deprived. (I also have chocolate everyday and my phosphorus measured on Monday this week was 3.7)

There is a better way . . .

Mike

[goofynina]

Wow Mallen, sounds like NxStage is working well for you, glad to hear it 

[Epoman]

Interesting replies. When I went to the center, on Thursdays and Saturdays I would take off in the range of 4 to 5 kilos. On Tuesday, it would be about 6.5. If I had to take off more, I would do it on Thursday. I, too, would crash. They kept raising my dry weight, saying "you must be gaining weight". What bullshit!! I won't bore you with blood pressures of 70/40 etc.

Things changed when I started using the NxStage. I dialyze 6 days a week and my daily gain is between 0.5 and 1.2kg, which I can easily take off. I have dropped my dry weight 2kg, from 86.5 to 84.5 in two weeks, without any problems. My standing BP at the end of the session is 124/77. I give myself two x 200mL "flushes" during dialysis and my pressure never drops below 110. Also what is very interesting is I no longer have this craving to drink something. I drink what I want, when I want - I don't feel deprived. (I also have chocolate everyday and my phosphorus measured on Monday this week was 3.7)

There is a better way . . .

Mike

Yeah it's actually amazing I used to take off 4 kilos every M,W,F, now on NxStage I take off 1 kilo at a time maybe 1.5kilo and I DRINK whatever I want. I have not changed my drinking habits one bit and I actually take off much less while on NxStage, and I too eat chocolate (maybe to much) and Phosphorus is about 5-6 which is kinda high but I don't take my binders very often.

Now back on topic, HELL YEAH 6 Kilos is VERY BAD for your heart. Now and then it is ok (if you can handle it) however if you do that for an extended period of time, you will indeed do damage to your heart. Just ask me I KNOW 

- Epoman

[Amanda From OZ]

Hey john,

i agree with everyone else if you have that much fluid to lose EVERY dialysis it will not be good for your heart in the long run. My DR. told me that you should not be taking off anymore then 500mls/hr. Anything over that has the potential to do damage.

With my type kidney disease i still pass urine so it isn't really a big problem..... but i can imagine how hard it is. Just try to drink less, it will really help improve each dialysis session and your overall health.

[stauffenberg]

Because dialysis is not run for profit in Canada, if it looks as though a patient is gaining weight from fluids, or if there is too much fluid weight to remove, the clinic just schedules an extra appointment to remove the excess fluid.  There is no fuss about how much Medicare will compensate or whether the clinic will still be making a profit or not, since it is all run by a single government payer so the sole interest is the health of the patient.

Theodicy, which tries to find proofs of the existence of God from the kindness in the design of the universe, used to be a major branch of philosophy until a few centuries ago.  Now I wonder if in dialysis we find a kind of anti-theodicy, since high creatinine levels themselves make people thirstier than normal, and yet dialysis patients are required to drink much less than people who don't have high creatinine levels.  Also, about 35% of all dialysis patients are diabetic, and the main symptom which diabetics notice is their extreme thirst, which is fine as long as they can drink as much as they like, but once they wind up on dialysis, the very condition their disease caused also causes the main symptom of their disease to be more difficult to tolerate!  Why do so many independent factors keep coming together for dialysis patients to make them as miserable as possible?

[angieskidney]

Because dialysis is not run for profit in Canada, if it looks as though a patient is gaining weight from fluids, or if there is too much fluid weight to remove, the clinic just schedules an extra appointment to remove the excess fluid.  There is no fuss about how much Medicare will compensate or whether the clinic will still be making a profit or not, since it is all run by a single government payer so the sole interest is the health of the patient.

Ya I was just about to post that but you beat me to it

My dialysis unit will not allow me to take off more than 5.5 in one sitting.

I got a question though. When you guys are posting about how much you are taking off, is that including the calculation of rinseback/runback of saline at the end of treatment and drinks/ice during treatment??


Also if they say that you probably gained weight because you are crashing with having 6.0 taken off .. I would say don't raise the dry weight target as you might just be crashing because of how much is being taken off at once. Another day of dialysis the very next day would be best. And for the patient to NOT DRINK SO MUCH! Unless they went to daily home hemo

[thegrammalady]

I never let them take off more than the absolute minimum!!! Just because I weigh a little bit over my dry weight doesn't mean I'm retaining fluid. In my case it means I ate too much starch. (shame on me) I refuse to crash, the last time I cramped it was so bad my leg muscles hurt for a week. If I go out at the same weight I came in at it's just fine with me. Funny thing though even though they only take 1.2......in today at 84.1 our at 82.1. I think that just proves my point.

[Rerun]

Take a look at http://ihatedialysis.com/forum/index.php?topic=173.0 and
 http://ihatedialysis.com/forum/index.php?topic=359.0  and
http://ihatedialysis.com/forum/index.php?topic=968.0

The best is a quote from Big Sky: 

However I see that more and more units are moving to the trend of percentage of bodyweight as fluid gain between treatments.  3% during weekdays and 5% gain over weekends.

I would guess your rinse back, what you eat and drink during your run would be on top of that.

[jonn r]

Interesting replies. When I went to the center, on Thursdays and Saturdays I would take off in the range of 4 to 5 kilos. On Tuesday, it would be about 6.5. If I had to take off more, I would do it on Thursday. I, too, would crash. They kept raising my dry weight, saying "you must be gaining weight". What bullshit!! I won't bore you with blood pressures of 70/40 etc.

Things changed when I started using the NxStage. I dialyze 6 days a week and my daily gain is between 0.5 and 1.2kg, which I can easily take off. I have dropped my dry weight 2kg, from 86.5 to 84.5 in two weeks, without any problems. My standing BP at the end of the session is 124/77. I give myself two x 200mL "flushes" during dialysis and my pressure never drops below 110. Also what is very interesting is I no longer have this craving to drink something. I drink what I want, when I want - I don't feel deprived. (I also have chocolate everyday and my phosphorus measured on Monday this week was 3.7)

There is a better way . . .

Mike

Yeah it's actually amazing I used to take off 4 kilos every M,W,F, now on NxStage I take off 1 kilo at a time maybe 1.5kilo and I DRINK whatever I want. I have not changed my drinking habits one bit and I actually take off much less while on NxStage, and I too eat chocolate (maybe to much) and Phosphorus is about 5-6 which is kinda high but I don't take my binders very often.

Now back on topic, HELL YEAH 6 Kilos is VERY BAD for your heart. Now and then it is ok (if you can handle it) however if you do that for an extended period of time, you will indeed do damage to your heart. Just ask me I KNOW 

- Epoman

now i sound kind of dumb asking this but why is it bad for me to be taking off that much....i was taking off 4.0 and was tring to watch what i drank but as you all know its hard to only drink so little......plz people fill my head with why this is bad so i learn....HELP

[angieskidney]

I tried to look up some info but I am sure Epoman could find you better links or anyone here could explain better in their own words. But here are some links to read in the meantime:

• Dealing with the Unexpected with HemoDialysis
• Managing Your Special Diet
• Blood Pressure and Ultrafiltration in Dialysis - Drink too much fluid and risk drowning

Hope these help!  The last one I think is the best and easiest to understand! 

[jonn r]

like it says its not easy for a diebtic not to drink water when they have high blood sugar....this is drivinng me crazy

[angela515]

It's not easy for anyone not to drink water on dialysis... Maybe you should look into other forms of dialysis where the fluid restrictions are less.

[glitter]

my husband gets 32 oz a day-thats it. and he usually takes off 3.0 during the week and 5.0 on the weekend.

He struggles too,like a lot of the people here do,and PD is not an option for him.He tells me he just has to make up his mind not think about it...It seems like some days are easier then others. He uses the oasis spray once in a while,and he eats candy sometimes,especially sour tangerine altoids.I am sorry your struggling so hard. 

[angela515]

PD isnt the only option for not limiting fluids. Theres nocturnal... and home hemo, and whatever else stuff like Epo does... i forgot the name

[glitter]

PD isnt the only option for not limiting fluids. Theres nocturnal... and home hemo, and whatever else stuff like Epo does... i forgot the name

yep-thats true-I forget.lol-we have already checked out NxStage ourselves-but my husband decided he wasn't ready to bring it home-it is still really overwhelming 'in center',and his center really does not want him to be informed,we would have to travel 130 miles monthly and change nephs too..Another thread.

I wish there were more options.

[boxman55]

I try and only have no more then 3 kilos taken. most of the time I tell them to just take what I gained from the last time. That works for me and I don't cramp up then or my BP doesnt crash-Boxman55

[angela515]

PD isnt the only option for not limiting fluids. Theres nocturnal... and home hemo, and whatever else stuff like Epo does... i forgot the name

yep-thats true-I forget.lol-we have already checked out NxStage ourselves-but my husband decided he wasn't ready to bring it home-it is still really overwhelming 'in center',and his center really does not want him to be informed,we would have to travel 130 miles monthly and change nephs too..Another thread.

I wish there were more options.

I totally understand. My dialysis cener never even told me about PD, I found  out myself doing research online. My neph onwed the 3 dialysis centers I went too, so obviously he wants everyone on hemo cuz he gets paid. I believe this is how most of the country works.

[MJB]

John R-

I have just stumbled across your question. I too had a terrible time controlling my fluid intake on 3 X's a week dialysis. I used to take 4 kilos off minimum every treatment, sometime up to 8 kilos during the holidays. I can tell you first hand as others have that this is the quickest way to kill your heart. I have caused great problems for my heart with my over indulgences. It causes your heart to enlarge. My cardiologist explained it this way...Every other day it's like doubling the size of your heart then in a period of four hours you deflate it. Your heart cannot pump effectively with this happening. It leads to congestive heart failure, valve complications and possibly and ultimately heart failure by clots forming in your heart and causing a massive heart attack. Yes this is bad. I have since changed to daily home hemo and I can say I no longer have the thirst that I used to have and have better energy than before. It does allow you to have a bit more relaxed diet and fluid intake. I think you should consider other treatment options if you find that you cannot control the fluid issue. I wish you the best of luck.

[susie q]

I try to stay under 4 kg.  If I try to take off more than that I feel worse than "normal" . 

[DeLana]

As others have already mentioned, excessive interdialytic fluid gain (more than 2-3 kg) puts a tremendous strain on your heart and blood vessels.  I always tell my patients to think about a garden hose - the more fluid it holds, the more it stretches (that's your blood vessels who get damaged by the pressure); now connect this garden hose to a muscle that's supposed to pump the fluid and imagine what this kind of high-pressure fluid will do to it.  In your body, it will cause cardiomegaly (an enlarged heart - cannot pump as efficiently), which leads to "congestive heart failure".  This damaged heart can develop arrhythmias (such as atrial fibrillation, A fib) some of which can cause stroke or even sudden death.  Damaged blood vessels include the aorta (the main artery leading to the heart), which can start to dissect (develop a tear) and may then rupture; this is quickly fatal.

Yes, the machine can take the fluid off for you, up to 2 kg/hr even.  And yes, you may be able to tolerate this amount of ultrafiltation well, without cramping or hypotension.  But - this doesn't change the fact that your body will be damaged, slowly but surely, in between treatments.

Wishing you the best,

DeLana 

[Triker]

It sounds like I have to learn how to stop killing myself. They pull 4.5 or 4 after rinseback. At my clinic they won't pull anymore without being hospitalized. I have fluid overload problems. NxStage sounds great, but besides wondering about the cost to me, I never got that far in considering it, when they told me that I would have to have a partner. I'm single.

[karen547]

I usually take about 2 kilos off. 6 seems a bit much....