Dry weight

[Loretta]

Good morning all!   I have been having trouble finding my dry weight.  I have been very sick and lost some weight, which is good for me, the loosing weight part at least, but I have been struggling to find me new dry weight.  Yesterday I went in 2 kilograms under my old dry weight.  I asked to have 3 kilograms off because I knew I had had at least that much to drink since the last treatment.  On his own the tech programmed in only one kilogram,  When I found out about it after the treatment I was mad!  So I talked to the nurse and she lowered my dry weight to what I weighed at that point.  Then she told me to remind her that she had said that they could "Challenge" me the next few treatments and then when they got closer to my new dry weight they would put me on a crit line.

How have some of you handled it when you have lost dry weight?  I feel like I have to spoon feed these people and even then some of them don't even listen! 

Another thing I a m frustrated about but it is just kinda stupid a my part.  I use to gain 7 kilo's between treatments, and of course I always got scolded about it.  Now I am only gaining three, and they don't say anything, and have never even said anything about the improvement.  I wouldn't mind so much, but they had spent so much time scolding me before that at least they could recognize the improvement.

Loretta

Loretta

[Meinuk]

Hi Loretta,

When I was in center, we always had an issue finding my dry weight, so it was decided that we would use my blood pressure as an indicator.

Depending on your fluid and BP status, you may be able to factor your BP in when determining how much weight to take off.

A critline will help, but really knowing your body and its reaction to food/drink is what will really help you in the long run.  In my experience, techs and nurses only want to go by what they read in the chart, and you need to force them to evaluate you as an individual on that particular day.  "Challenging" your dry weight can lead to cramping and discomfort.  It shouldn't be a challenge, it should be an educated estimate based on your personal history.

[monrein]

Loretta, could you ask to speak to the nurse in charge and address the issue of your dry weight with her/him?  Or even speak to the doctor about wanting to feel like you have more say in your treatment.  I do understand how annoying it is to be scolded about gaining too much then not even get any response at all when you have made a major improvement.  However, just remember that you're gaining less fluid weight to benefit your own health and to feel better after your run, not to please the staff or to meet their expectations.  Become familiar with every aspect of your treatment, including what they program the machine to take off each time and complain politely but insistently that you be a part of all these little decisions as well as the bigger ones.  
 
I know that this can be really hard to do  as some staff can be very intimidating, overbearing or whatever and it's especially hard if you're feeling rotten and just want to be looked after but in the long run we have to train these medical people to not treat us like little kiddies but rather to consider us partners in our own care.  I would even say something like "You know, I've been working hard to not gain so much fluid in between sessions and I've lost some weight lately because I was so sick so I simply cannot go out of here overloaded.  Can we try to take off x amount of kilos +400 (or whatever it is on your machine) for rinseback and x amount that I'm going to drink this time and I'll monitor my blood pressure or let you know if I start to feel crampy or like I'm crashing."  That's what I've been doing but of course my unit encourages all this so I'm not assuming that yours will take it too well.  TOO BAD, they'll have to learn to deal.

Best of luck with all this and hang in there.

[Meinuk]

Hi again,

After I wrote my first reply, I have done some thinking, and after reading Monrein's post, I just have more to say about dry weight...

Monrein is right, you should congratulate yourself for your accomplishments.  It isn't easy and CKD is an uphill battle.  Try not to be intimidated.  Think of it as if you were seeing a car mechanic or any other service professional.  That's what our medical teams are, service professionals.  Their job is to keep us in the best shape possible with the tools that they have available to them.

Now, on to fluid gain.... With your past (and I stress PAST) history of coming in over loaded, have you had a cardiac workup?  I don't mean to scare you, but it is important that you check under the hood and make sure that all parts are in the best possible order.  Extra fluid puts stress on our cardiovascular system, and an echocardiogram can really spot any potential danger signs.

If you can take small baby steps in getting to know what is happening to your body, and how to make yourself feel better, well, that is a form of empowerment.  It will show how much respect you can have for yourself, and in turn, that self confidence will shine through and those people who scolded you in the past will be forced to show you some respect.

I've seen it in my old unit, people who have just given up.  The nurses and techs treat them like they have given up, and they are just a person in a chair.  But those people who are actively engaged in their own well being, well, the staff is forced to acknowledge them, and they step up accordingly.

IHD is a great place for support and sympathy - we have all been there in one form or another.  And we are here to congratulate you on your improvement, so, even if you feel the staff at your unit aren't rooting for you, be safe in the knowledge that we are.

Best,

Anna

[kitkatz]

You have to pat yourself on the back in the unit in front of everyone once in a while.   Say: Remember when I used to come in with.....and now I have only 3 on.  Hot damn for me!

[flip]

Fortunatley my nurses let me decide how much to take off. Sometimes, if I don't have a lot on, I will actually go a kilo or two below my dry weight.

[Loretta]

Anna, thanks for your concern about my heart.  I have had several echocardiograms since I was putting on so much fluid.  These have been done for other reasons, surgery etc, but they have been fine.

Thanks to you who have answered.  You guys are so right.  If I want to feel as good as I can I need to be in charge of what is happening to me, in all areas of my treatment.  I need to become more aware of what is happening including the meds the nurses give me while I am on treatment.  I am setting a goal to ask the nurse more about them tomorrow.  With encouragement from all of you hopefully I can get more in control of my treatments.

Thanks to all

Loretta

[jbeany]

The more I learned and the more control I took of my treatments, the happier I was. Insist on setting your own dry weight, and watch them enter it into the machine to make sure they get it right!

Funny, I'm just the opposite of you.  I rarely gained more than 3, even on the weekends, and when the nurses would "pat me on the head" for it, I used to get annoyed with them.  I wasn't doing it for their sappy encouraging remarks - I was doing it because I hated the way I felt when I was water logged.

[thegrammalady]

i have lost 25 pounds since january. i carefully log my incoming and outgoing weight. the difference is what i have gained in fluid from treatment to treatment. that is if i have eaten as i should. i always tell the tech how much to take off. your dry weight is really nothing more than a wild assed guess. that is if you are monitoring things as you should. i always check the machine to make sure it is set right and have it turned to where i can see it during treatment. (i want to monitor my blood pressure and know why the machine is alarming) don't let them tell you it can't be done that way. the tech isn't in charge you are. i wouldn't let the tech who took it on himself to ignore my instructions near me any time soon.

[Jess21]

Well, when I got out of the hospital in November no one had any idea of what my dry weight was because I had been bouncing between about 20 lbs.  Little did I know I had gained even more then I thought (I was wearing scrubs for school everyday so didn't even notice).  Once I started dialysis I lost about 40 lbs of fluid and they thought my dry weight was good.  I was even told by my neph to stay at that weight or even put on weight.  But after a month or so I noticed my ankles were swollen, even after dialysis.  When I changed centers due to returning to school, the nurse saw that and lowered my dry weight when I got there, and again after about a month.  Now I'm about 60 lbs lighter than when I left the hospital, and no swelling.  And we know that it's a good dry weight cause any lower and my BP drops and I have to get fluids back into me (or drink that wonderful hot water and bullion cube )  So in my case you don't know dry weight until you try.

[RichardMEL]

I too use my BP and how I am feeling as a guide. When the BP is lower than normal for a few sessions then I'll add .2 or .5 to the dry weight... ditto with the other way (unless I feel a bit sweaty, low during a session). Just yesterday I got my dry weight taken down by 0.3. The nurse wanted 0.5 but I thought that was too much. Luckily they were happy with my decisions.

As others have said it's just a guess and I always take into account if I've had more (or less) than usual to eat which can influence things a little. The usual rule is that the gain between treatments is in general mostly fluid... dry weight gain or loss usually is much slower to show up... that's why it's a wild guess.

Good luck finding your dry weight!

[boxman55]

sorry to here that your unit has there head in their a** I discuss how much I want off and they will come back with a counter 0ffer and we will decide together. Which is how it should be...Boxman

[flip]

Some centers use cramping to determine when a person is near their dry weight. Like Richard, I prefer the BP method.

[lola]

Otto's center really listens to him since he keeps losing weight. When they pull to much off he's misarable, he's even gone so under and feeling dry that they added fluid. It seems like they just do a lot of cleaning and not pulling, but he also still pees.

[stauffenberg]

There is actually a machine in which the patient can be placed to determine the real dry weight, but very few centers have these, and the procedure for determining the real dry weight is elaborate, so it is almost never performed.

Almost all dialysis patients are waterlogged to some extent, so keeping the dry weight constant, keeping the blood pressure at some acceptable value, restricting daily fluid intake, etc., are all procedures that tend to permit fluid to accumulate.  Many patients accumulate fluid which cannot be seen as surface edema, since it fills the internal spaces of the abdomen or increases the blood volume.  The real proof that dialysis patients are typically waterlogged is the fact that right after a transplant, most patients rapidly shed a huge amount more fluid than their intake and experience a drastic weight reduction -- at least unti the prednisone puts it up again.

I always maintained a normal blood pressure on dialysis and was careful with my fluid intake and so assumed I was doing just fine, but ever since my transplant I have weighed 15 pounds less than while on dialysis!

[RichardMEL]

Some centers use cramping to determine when a person is near their dry weight. Like Richard, I prefer the BP method.

omg! That's horrible!!!! If I had to wait till I cramped to get some action I think I'd complain!! I consider cramp/crashes as the next stage after the BP "warning sign" - I am very careful to monitor my BP and make appropriate changes. I HATE cramping - even more so while on dialysis.. luckily I've only cramped twice in nearly two years while on D which is fantastic...

Just on Stauffenberg's comnent about the dry weight machines... I know our unit has these special scales that claim to measure fluid percentage or something in you. I've used them once or twice.. so they can figure out more closely if you're too dry or too wet. Is that the kind of thing you mean?

[julian230]

What if your blood pressure is normally low? How do you determine your dry weight than? I'm a rare exception , despite having kidney disease and all that fun stuff, I still always had a history of a low blood pressure .. I run around 104/60 most the time. Is blood pressure really an accurate way of guiding you in dry weight ? What if you bring too much fluids in , wouldn't your pressure drop just from taking too much off at one time?

[BigSky]

Dry weight is trial and error.

Problem is BP and cramping often indict that too much fluid is being removed to fast, even if one isnt at their dry weight.

 

[energizer]

Dry weight will always be an issue.  Weight it seems will change.  You will have periods where you will lose, in the hospital and periods where you will gain, out of the hospital.  The best advice I received from my nephrologist is that your dry weight should be where you feel the best.  In my current situation if I were to be at my "true" dry weight, I would have a bp of 84/45.  So I keep a kilo of fluid on board to keep my bp up to feel better.  I always tell the nurse or tech how much I want to lose.  I had a run in with a new nurse about a month and half ago.  I had a weekend where I had a family dinner.  Had loads of salty things.  I had gained five kilos.  I wanted to take it all off.  He wanted to take a bp every ten minutes.  I pulled the bp cuff off and said I would put it on every thirty minutes to take the bp.  I told him if he didn't like it I would sign an "against medical advice" form.  Sometimes you need to stand your ground. Congrats on gaining less fluid between treatments.  To test yourself, see how much you pit when pushing your finger on your leg in the evening.  You can guage how much fluid you need to lose.  You should pit at most about an eightth of inch when dry.  You will never get rid of all the edema, it is just too hard on the body.  As my nephrologist said,  "No one has died from a little edema."  He's great!  If you don't have labored breathing then you are okay.  Learn to read your body and you will be okay.

[RichardMEL]

They don't always just have to use BP as a measure.... I've seen several different ways to try and figure it out. One is they have a special set of scales that measure body fluid % or something (God knows how that works) and so they can tell if you're too "wet" or too "dry" and ajust that way. Another measure they used on me recently was working out the ideal KtV for age, height, dialysis session etc then measuring that against the actual measure. So there are a number of ways to figure out an IDW.