Dry weight for HD - science or guesswork?

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chrisb
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Joined: Thu Jul 19, 2012 4:57 pm
Location: gloucestershire

Dry weight for HD - science or guesswork?

Post by chrisb »

I am sure that the migraines i am experiencing after nearly every session of HD is because they are trying to get my dry weight too low. my consultant has suddenly demanded a DW of 1 kg less than previously needed although i have no signs of fluid retention and i am urinating very well.

in my twenties i used to suffer from similar headaches until i was recommended that i drink more. i have followed this advice for 30 years and can very often stop a headache in its tracks by drinking a glass or two of water instead of taking tablets.

now i am told to reduce my fluid intake even though i am weeing well and they are trying to forcibly remove between 1.50 - 2.50kg of fluid each session.

by the time i get home my head in pounding and the first thing i have to do is stick my head over the sink where i retch repeatedly but nothing comes out. painkillers make it even worse and the only thing i can do is sleep through to the evening when the worst of the pain has eased but i am left with a "presence" in my head.

i know my dialysis is vital to keep my alive but i dont know if i can face these headaches 3 times a week with the following day wasted by getting over them.

the staff however will not accept that they are trying to over do things.

any advice would be gratefully received
wagolynn
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Joined: Thu May 23, 2013 2:49 pm

Re: Dry weight for HD - science or guesswork?

Post by wagolynn »

Hi Chrisb,
Your first question - yes dry weight is a guess that is fine tuned by observation.

Your symptoms do sound to me to be dehydration, are you peeing 100% (intake close to output). Are you sure the change came from the consultant, at the unit I attend, the staff decide how much to take off and are always wanting to take more. At the stage I am at, my consultant has said she prefers to push my kidneys with water pills but the unit staff try to set the machine to remove water, on the one occasion I did not notice they had done this I had similar symptoms to you. Now I know how to set a machine up and I watch them like a hawk. Does your weight increase between dialysis sessions? if so, is it very much. I would phone the consultant and describe the symptoms, if that does not trigger a change my next move would be to see my GP.
jstuartrobson
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Location: Spalding, Lincolnshire

Re: Dry weight for HD - science or guesswork?

Post by jstuartrobson »

I absolutely hated Hd. I had to go on it a couple of times when my Pd catheter kinked. This happened twice. I remember feeling really dizzy and severe cramps in the calves after it. Not only that but on one occasion when putting the line into my neck I had blood clots after!
wagolynn
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Re: Dry weight for HD - science or guesswork?

Post by wagolynn »

And I bet they inferred it was your fault rather than them being lax in the procedure.
chrisb
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Location: gloucestershire

Re: Dry weight for HD - science or guesswork?

Post by chrisb »

yes it was the consultant as a trade off for reducing my time from 4 to 3.5 hours to try to help the headaches but i do detect an atmosphere amongst the staff as to who gets the best results
suz
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Location: Australia

Re: Dry weight for HD - science or guesswork?

Post by suz »

Hi Chris
I was on HD for over four and a half years and initially like you I had really bad headaches following each session. I also continued to pass urine and would come in for my next dialysis session either the same weight or slightly less than the weight I had gone out at the previous session. The staff would just take off whatever I was going to have to drink and any other fluids given during the dialysis session. After discussions with my Consultant my hours were reduced to 3.5 and it was agreed (mainly at my insistence) that no fluid would be taken off . Although I would still get the occasional headache they were far less frequent or severe and my weight remained the same. Some of the dialysis staff took a bit of convincing that they didn't need to take off any fluid and with a couple I had to insist but it worked for me. I also believe that by not taking fluid off when it is not required you maintain your urine output for longer,this is my theory anyway. I also didn't have any fluid restriction. Good luck and hope it all goes well for you.
Suz
wagolynn
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Re: Dry weight for HD - science or guesswork?

Post by wagolynn »

Hi chrisb,
In my experience dehydration headaches are just that and not related to time on the machine.
Reducing your time reduces the amount of toxins removed, I have watched patients complain and think they have a victory if they have their time shortened but they always suffer in the long run. There are three sizes of dialyser commonly in use, time may be shortened by changing to a larger dialyser.

We must remember that headaches are a symptom of our condition, a very rough rule of thumb would be more toxins left equals bigger headaches.

As far as I can workout, looking in assorted places, the correct action would be to do a 24hr urine check to establish if you are retaining sufficient water to justify taking some off. You could ask your consultant if you can do a 24hr check to establish what is going on.

I think it is standard practice in many areas of the country to take off some fluid to compensate for fluid added by flushing blood back and any fluid given as refreshments, I think the common figure is 600ml. The unit I attend has new machines which make there own flushing and priming fluid, both processes are under the control of the machine and therefore more controlled.
I do not have any fluid taken off so I leave the unit heavier than when I came in.
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bigbuzzard
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Re: Dry weight for HD - science or guesswork?

Post by bigbuzzard »

This was a bugbear of mine when I was on HD. Correct me if I'm wrong, but I think that having a 'dry weight' only really makes sense when you don't really pee normally and are on a fluid restriction. I have PKD, and usually peed relatively 'normal' volumes, so was never fluid-restricted. I gather this is common in people with PKD. Some of the dialysis nurses didn't seem to get this, and were always trying to fix on what my dry weight 'should' be. Luckily, my time on HD was short, as I moved to PD asap. If you're urinating well and not on a fluid restriction I would want to know whether a 'dry weight' is meaningful at all. For sure, there will be an optimum amount of fluid they should set the dialysis machine to remove each session, but this should only relate to a DW if you're on a fluid restriction. Open to correction as always from those with more HD experience than I have.
chrisb
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Location: gloucestershire

Re: Dry weight for HD - science or guesswork?

Post by chrisb »

i think my headaches are caused by dehidration. when i had one PKD kidney removed 2 months ago the amount of wee i was producing was less than before but it seemed as though my remaining kidney was a bit snoozy/lazy and has now perked up because i am producing rather alot of wee.

before my session yesterday i had 2 paracetamol with my breakfast and as well as a cup of tea and i drank 1 pint of squash (suger free). i only had one of the 2 hot drinks offered (i am not really a hot drink person) but sipped at a cold drink throughout the session, particularly when i felt my head start to swell up (my spectacles get tight at the sides and over my nose so i have to take them off) and the swelling disappeared. i came off the machine without a headache and did not get one at all that day.

this may not have fixed things but obviously i will give it a try again next time.
wagolynn
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Re: Dry weight for HD - science or guesswork?

Post by wagolynn »

Hi chrisb,
It all fits together nicely, I would try without the paracetamol.

I think I would do a 24hr fluid check first to see what is actually going on. Normally this is done in early diagnosis to establish the amount of protein being peed out. You probably know what to do but just in case - On a none dialysis day measure all your fluid in and all your fluid out (pee) over 24hrs (by volume or weight). Fluid out will be less than fluid in, if it is hot and you have been sweating, fluid is lost also, some goes into your excrement, total loss, say about 20%ish. If your output is within 20% of your input I think it is worth mentioning this to the consultant, to me it means no fluid to be taken off but I am only a patient. Fluid intake? with PKD and passing water the more the better, within reason, roughly 1.5 - 2.5 litres per day, depending on how hot it is, generally, drink if you are thirsty works.

Are your blood results good? When fluid is taken off in dialysis, some of the unwanted stuff goes with the water.

The unit I attend has had new dialysis machines fitted, these have hyper filtration as a built in option. We have started to use this and I could see and feel a difference, I feel better and my bloods are better.

Hyper filtration, may be referred to as ultra filtration - by increasing the pressure difference across the dialyser membrane (by dropping the dialysate pressure) the membrane begins to work as a filter as well as its normal osmotic function, causing more fluid to be extracted from the blood. The machine compensates for the extra off by replacing the extra fluid with saline, usually after the dialyser, the end result being more water soluble toxins are removed and some larger molecules. I think, some older machines could work in a similar way but required bags of saline and everything had to be manually adjusted.
wagolynn
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Re: Dry weight for HD - science or guesswork?

Post by wagolynn »

Hi bigbuzzard,
As the rate of fluid discharge (peeing) is unlikely to be subject to sudden changes, (most things in PKD are slow over time but speeding up as the endpoint is reached) , there will be a point where I will not be passing enough fluid but I will still be peeing, a 'dry' weight will have to be be established to estimate how much fluid needs to be removed in dialysis. You are correct, in that it is usually an intelligent guess which then gets refined over time, unfortunately, in my experience the nurses do not appear to understand this.
rheaybou
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Re: Dry weight for HD - science or guesswork?

Post by rheaybou »

Chris

how long have you been on HD for? in my first few weeks I would suffer terrible headaches and would be sick on a regular basis as i adjusted to it all. Once in Asda car park and another time outside the yorkshire wildlife park, that was my lowest moment of the whole kidney failure as I had people watching on as dark/blood like vomit was sprayed all over.

you can always refuse to have additional fluid taken off,(not sure they can force the amount) the amount you have removed is a personal choice, there were times when I asked for extra to be removed if I were at dry weight so I could have a meal out or a extra cup of water.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
chrisb
Posts: 275
Joined: Thu Jul 19, 2012 4:57 pm
Location: gloucestershire

Re: Dry weight for HD - science or guesswork?

Post by chrisb »

oh no reaybou i hope i dont have that to look forward to. how embarrassing as well as unpleasant.

i will have been on hd for 2 months on the 7th May so i know everything is new and somewhat experimental. as well as the headaches i am also getting horrible side effects which i am convinced are from the iron infusions they are giving me and i am seriously considering refusing future doses and just carry on with the EPO which i had for a few months prior to surgery and HD with no side effects only positive improvements. i presume i can refuse to have it but the trouble is that the staff keep saying you do not get side effects when you get the iron via IV despite the fact that the website for the particular product i am having lists numerous side effects via IV of which i am having several. there is also the possibility that the headaches are caused by the iron also but at the moment i still think its dehydration.

i am considering doing a 24 hour fluid test but the trouble is that the staff immediately dismiss everything i say about all these symptoms and keep insisting that it is nothing to do with HD/iron/dehydration. They know best!?! :roll:
wagolynn
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Re: Dry weight for HD - science or guesswork?

Post by wagolynn »

Hi chrisb,
Re 24hr volume test, you can do this yourself as described above, the staff will be thinking of the full 24hr test where the intuition is to measure protein leakage as a precursor to failing kidneys. However, I agree with the unit staff not hiding there belief, they know best.

The amount of water to be taken off is, as I understand it, left to the unit staff, all other decisions are made by the consultant and dietician, address questions to them as appropriate.

Use your GP, it is hard for the consultant to ignore your GP. You may have to get your GP involved by going with the headache, in the resultant questions, when, how long, etc. you can ask if it might be due to dehydration after dialysis and so on. You can then say you have done a 24hr volume check which confirms your thought you do not really need any off etc. We should not have to do this sort of thing but needs must...

Re Iron, you can ask if they have a different make, you may not have the side effects with a different brand. You can refuse to have any but that is not a very sensible choice, if you do not have any iron there is no way of making new red cells, without red cells you die. Again your consultant should be able to tell you how much ferritin you have (your body's iron stock is in the form of ferritin, as iron is toxic). If you do not get an answer, back to the GP looking for something to improve your blood....

I would expect you will be at least another month before things begin to settle down.

What size dialyser are you using?
What size needles?
What blood flow rate?
What kt/v is the machine showing at or very close to the end of each session?
chrisb
Posts: 275
Joined: Thu Jul 19, 2012 4:57 pm
Location: gloucestershire

Re: Dry weight for HD - science or guesswork?

Post by chrisb »

pass on the last 4 questions.

the gps at my surgery held up their hands long ago and declared they would not get involved with my ckd.

I cant see the harm in stopping one dose or two of the iron because there is definitely a pattern forming now that I am given the iron at regular intervals. it starts up during the evening after I am given a dose then gradually calms down during the week until the evening after the next dose when it all starts again. if I still get the symptoms without the dose of iron then I will know it is not that - cant see any harm in that.

the epo injections work perfectly well on their own in building up my hb beyond what was needed before it was stopped for my operation.

you say they know best. well they may know better but they do it know my body and it does not help when they contradict everything you say before you have had a chance to finish what you are trying to tell them. if I say its white they invariably say its black and vice versa :evil:
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