Dry weight?

[kristina]

Hello,
I am wondering how our dry weight is being calculated and how valid and/or, how successful can our dry weight actually be calculated ? Is there any well-tried-out-way to calculate/estimate our dry weight ? And/or, can our dry weight be estimated over a certain time whilst the whole process is carefully being medically observed ... and ... how is all that actually being done  ? I seem to have developed some dry weight calculation/estimation-problems and I have either taken off too much (which leaves me with total exhaustion, bone/muscle pain and washed-out-feeling) or, I have not taken off enough (which again leaves me with total exhaustion, bone & muscle pain and washed-out-feeling ) and my dry-weight-estimation seems to be all over the place ...
Is there anything I can actually do to assist the nurses in getting it right?
Many thanks from Kristina. 

[Vt Big Rig]

A mystery indeed. Over the Christmas holidays I knew I had gained some weight so we upped my dry weight a bit.  We ran that way for a month or more. Then one week my wife had to leave town. I went to my center for "respite".

Still got to use a NxStage machine and my nurse was care partner for the week (two days). We used the scale at the clinic and ran to my usual dry weight. When I arrived home I stepped on my scale at home and ...... I was a full 2 kilos below what I had been using for dry weight on the home scale previously. So  my bride and I started running to that and I felt fine. We challenge another 0.1 kilo every once and a while as I am continuing to try and lose weight. However I am paranoia about taking too much as I did once. Vomiting, cramps, and horribly washed out feeling the next day. I did not see a great decrease in blood pressure during the run which is what I was taught to pay attention to.

So, whether this is the correct way or not I cannot say but challenging just a small  every once an while and seeing how I feel has worked best for us. Once again like everything else concerning this disease it seems to be  listening to your body.

I hope you can work it out becasue I know that "drug out" feeling and would not wish it on anyone

[kristina]

Many thanks for sharing your experience VT Big Rig and I shall "give it a go" in the way you describe,
by making sure that only "just a tiny little more" is taken off now and then and see how "things" go from there...
Many thanks again from Kristina.

[kitkatz]

Oh, you mean crap shoot???

[Michael Murphy]

The center I use has a nurse listen to my breathing at every treatment he or she is looking to see if they hear fluid in my lungs, they also check and see if my ankles are swollen.  I check my fluid output once a month to verify I am still eliminating all my excess fluids.  I have a scale that measures in grams and I weigh my output and compare it against my input.  As long as they are close to the same amount I mad good for another month.  In addition twice a year I ask to challenge my dry weight by taking off several kilos below my current dry weight.  The tech monitors my BP and if I drops too much the stop taking off fluid and I know that my dry weight is fine. 

[kristina]

Oh, you mean crap shoot???

I am very sorry kitkatz, but I can't quite see the fun, because I have - unfortunately - witnessed a few patients in the center
 dying because they either have had taken off too much liquid, or they had taken not enough liquid off during their dialysis-treatment... and that fact, combined with their other ailmants, contributed to the exacerbation of their condition and as a result their body collapsed and they died...

[iolaire]

I feel like they are constantly challenging my dry weight level in my center by having inaccurate machines.  I drink 500 ML each session (and eat an apple) yet if they take of 1.5 kg (1 kg removal plus 0.5 kg that will be "returned"), I generally end taking off final weight of over 1 kg.  To me that doesn't make sense since I drink 0.5 kg of water and supposable they are returning 0.5 KG of saline at the end, plus the apply I eat is 0.15 kg .... it seems like I should only take off about 0.5 kg not over 1 kg .

That being said the center generally honors and asks how much I want to take off as long as its above 1.1 KG that they want to run the machine at.  I urinate so its more a challenge to make sure I'm hydrated enough but not too much so they can take off water to help the dialysis process but not take off to much.   Other centers with newer machines only feel like they need to take off 0.5 kg to have effective dialysis.

And that being said as if they consistently take off more water with no side effects I do lower down my dry weight but I wait a few sessions.

In Singapore they said they had some sort of diagnostic machine that could map your body and determine a dry weight.  It sounded like it was an imaging type machine.  In Montreal or Ireland the dialysis machines could determine the water content in your body (via blood) and automatically take the right amount of water, there they told me my dry weight was off by 0.2 KG - which I don't really care about well I still urinate.

[kristina]

The center I use has a nurse listen to my breathing at every treatment he or she is looking to see if they hear fluid in my lungs, they also check and see if my ankles are swollen.  I check my fluid output once a month to verify I am still eliminating all my excess fluids.  I have a scale that measures in grams and I weigh my output and compare it against my input.  As long as they are close to the same amount I mad good for another month.  In addition twice a year I ask to challenge my dry weight by taking off several kilos below my current dry weight.  The tech monitors my BP and if I drops too much the stop taking off fluid and I know that my dry weight is fine.

Many thanks Michael Murphy for sharing your instructive and very inspirational experiences, it is very much appreciated and gives me an important "way-forward" to go on.
Many thanks again from Kristina.

[kristina]

I feel like they are constantly challenging my dry weight level in my center by having inaccurate machines.  I drink 500 ML each session (and eat an apple) yet if they take of 1.5 kg (1 kg removal plus 0.5 kg that will be "returned"), I generally end taking off final weight of over 1 kg.  To me that doesn't make sense since I drink 0.5 kg of water and supposable they are returning 0.5 KG of saline at the end, plus the apply I eat is 0.15 kg .... it seems like I should only take off about 0.5 kg not over 1 kg .

That being said the center generally honors and asks how much I want to take off as long as its above 1.1 KG that they want to run the machine at.  I urinate so its more a challenge to make sure I'm hydrated enough but not too much so they can take off water to help the dialysis process but not take off to much.   Other centers with newer machines only feel like they need to take off 0.5 kg to have effective dialysis.

And that being said as if they consistently take off more water with no side effects I do lower down my dry weight but I wait a few sessions.

In Singapore they said they had some sort of diagnostic machine that could map your body and determine a dry weight.  It sounded like it was an imaging type machine.  In Montreal or Ireland the dialysis machines could determine the water content in your body (via blood) and automatically take the right amount of water, there they told me my dry weight was off by 0.2 KG - which I don't really care about well I still urinate.

Manhy thanks iolaire for your kindness in sharing your experiences. I shall check-up very carefully about the age and reliability of "my" dialysis-machine and go from there and I thank you again very much and send you my kind regards from Kristina.

[kitkatz]

My comment about dry weight being a crapshoot was sarcasm.  Seriously the dry weight is a guess, just a guess where your weight might be based on your weight when you came in and ow much AVERAGE fluid a dialysis patient might take in per day.  If you are abnormal in any way from their guess or have problems, well you are just different and their formula will not work for you.  So patients must track their weight and know what it feels like to have fluid on and off your own body. 

My crazy low BP makes my dry weight a crap shoot every time I go into dialysis.  It is frustrating to know you have fluid on you and know it has to come off and only get two kilos off when you need three off, because someone who does not know you ( new staff) was concerned about your BP and shut the pull off on the machine.

[Charlie B53]

................... because someone who does not know you ( new staff) was concerned about your BP and shut the pull off on the machine.

Understandable, but far better than staff insisting to pull off too much and create problems.

Is it correct to say the point is to know yourself, and INSIST on taking off the amount YOU have figured needs to be taken off,  no more, and no less.  Unless you begin to develop a problem.  But that should be a given, to be able to stop at any problematic point.

[kristina]

Many thanks kitkatz and Charlie for your kind inputs, it is very much appreciated.
... I have been busy collecting my 24 hour "output" and comparing it with my 24 hour "input"
and it has been an extremely constructive exercise to eventually get a better "estimation idea" about my dry weight ...
Of course, this exercise has to be done on a regular basis, but at least I have had a chance to "get the ball rolling" ...
Many thanks again from Kristina.

[Cowdog]

A Crit-Line monitor is an excellent tool to gauge fluid levels and help determine dry weight. I really like them, you get a graphic representation of your red blood cell concentration. A gentle slope of the line on the graph that flattens near the end of the treatment and you are at your dry wt. Pull to hard and the line is too steep, pull to easy and the line doesn't slope enough. If you understand the machine and what its telling you uncomfortable/dangerous events can be avoided by backing off the pull when the line on the graph is too steep.
Unfortunately the Crit-Lines were recalled last June due to connectors in the blood lines that were not idiot proof and if not correctly installed could leak. All the machines at my center have a Crit-Line on them but are of no help until a fix is found for the connector.

[iolaire]

Crit-Line monitor

  That looks good, does it allow you tell how much liquid is there in the blood or are you just looking at the shape the whole time?
http://fmcna-hd.com/critline_monitor.html

Also of note for my insurance (I'm in center anyway):
http://www.aetna.com/cpb/medical/data/300_399/0373.html
Aetna considers the Crit-Line In-Line Monitor (In-Line Diagnostics, Kaysville, UT) experimental and investigational for monitoring hematocrit and oxygen saturation of members because the effectiveness of the Crit-Line In-Line Monitor in avoiding intra-dialytic morbid events, in preventing ischemia due to intra-dialytic hypoxia, and in determining access re-circulations has not been proven.

[Cowdog]

It displays your hematocrit level as a % and plots that value on a real time graph. Initial value the 1st few times you use it doesn't mean much. After several treatments you can get a good idea of your fluid load from the hematocrit reading. Basically you have found the value @ your dry weight.
The problem I saw with the use of the units at my center was that many of the staff didn't really understand what they were seeing and how to interpret the information. Staff was given an in-service overview of control panel operation and an unclear view of what the line slopes indicated. My Neph was really the only person there that you could have a real conversation with about the units. (Fresenius bought Crit-Line last year, that's when we got them on all our machines. Center has 50 machines.)

Reading through the Aetna report it looks like their 2 biggest issues are the Hematocrit values aren't as accurate as a lab test, imagine that, and the use and interpretation are patient specific and not idiot proof.

Using the Crit-line I could see how my body was responding to the UF level. Say I was pulling 4 over 4 hrs (1000ml/hr), for the 1st 2-2.5hrs my Crit-line graph would have little to no slope. my body was refilling almost as fast as I was removing fluid. The last 1.5hrs the slope on the graph would plummet and I could feel the change (BP drop, sweat, cramp).
From that I have learned to pull very aggressively the first half of the treatment. How aggressively varies based on how much I have on. On Tuesday its not uncommon for me to pull 1650-1700ml hr for the 1st 2 hrs (my dry wt is 107). BP has usually dropped enough by the end on the 2nd hour to indicate its time to back off the UF rate. I reduce the rate through the 3rd hour and try to only pull 500-600ml the last hr. Using this strategy has really helped in the way I feel post treatment. DISCLAMER - this strategy was developed by ME for ME and is no way a recommendation for ANYONE ELSE. I call the shots on my care, I call on trusted staff for advice as needed.

[iolaire]

Reading through the Aetna report it looks like their 2 biggest issues are the Hematocrit values aren't as accurate as a lab test, imagine that, and the use and interpretation are patient specific and not idiot proof..[/u]

Thanks, good info.  Re Aetna, I'm sure its cost since it would apply to home hemo only.  If a center paid for it they wouldn't care...