I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: F.A.Q. (Frequently Asked Questions) => Topic started by: sarahmanda on July 24, 2013, 09:31:42 AM
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So after more than 2 and a half years on dialysis I have officially stopped peeing. I came in 5.5 kilos over my dry today after thinking I had done really well on my fluids (I cried when I talked to my Dr about it) Anyway, my question is, how do I limit my fluids even more than I have been ...especially now in the summer?
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Just spent a weeki in 100 and I made and ate 1 ounce ice cubes....
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Salt is the key. Don't eat any. Use Mrs. Dash for flavor on your food and pepper is okay. Sweat is fluid so when you sit outside and sweat you get to drink a little bit. It is hard. Don't eat salt. Look at labels for sodium.... You can have about 1000mg for the whole day. A can of soup may have 700mg.
They say you can gain .03% of your dry weight. So between sessions if your dry weight is 100kg you can gain 3kg. If your dry weight is 50kg you can only gain 1.5kg. I'm usually over!
Actual size.... :beer1;
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I don't drink except to swallow pills.
After having a bad experience of fluid overload 10 years ago that confined me to a hospital bed for three days with a catheter up my leg into my heart (which was the size of an over-inflated football with the valves pushed outward) having aggressive dialysis treatments to establish my dry weight and reduce the size of my heart and correct the valves cured me of drinking too much.
Today I treat drinking as I do mouthwash (swish it around without swallowing and spit it out). That will give you the feeling of having a drink and keep your fluid gains to a minimum generally gaining 2.2 kg between treatments.
Once, I had a treatment where I came off the same weight as I weighed in due to the tech not setting the amount to take off correctly and I was facing a long, dry weekend before my next treatment. I managed that by drinking for pills only and sucking sugar free lifesavers which create a lot of saliva which can be spit out.
When I weighed in on Tuesday for my treatment I was the same weight as when I left.
That time I made sure the tech set the correct amount of weight to be taken off.
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I am struggling with this, too! After hearing "drink lots of water" for 20+ years, now I am told to limit my fluids. I am used to having a glass of ice water with me throughout the day. Since having my kidneys removed last month, I am taking off 2.5 to 3.5 kgs each treatment. I dialyze 5 times a week, so that is quite a bit of fluid for me. Before the surgery, I may have 1 kg to remove after a day off. I have yet to find some way to quench my unending thirst without paying the price when I step on the scale. It really stinks. I have had suggestions of chewing on ice cubes, eating Popsicles, freezing grapes, etc. but none of them seem to take away the desire for a big gulp of ice water lol! Guess we have to work through it and figure out what we can manage. If you find something that helps, please let me know! I am always eager to try something new. Best of luck to you!
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It takes a lot of effort to reduce fluid intake, and this is probably one of the hardest parts of this disease. The comments on this thread were good value.
Start with food. Western food is typically full of salt which is not good for anyone's body. The concentration of salt in the blood stream is how the body determines when to regulate blood pressure. The lower the salt (or concentration of) the more urine is produced. Conversely, the higher the salt concentration the more the brain craves fluid, very much like an addiction.
A healthy kidney can absorb the pressure that salt overload creates, but we ESRD suffers don't have this ability so keeping salt out of the diet is key to health and sanity.
While every person has a different fluid removal tolerance I do believe treatments do go more smoothly with a lower fluid removal.
Moving to the drinks themselves. If your winning with the first item then you will be surprised how little you will crave fluid. I the first 6 months I kept a mobile phone diary (in my case a spreadsheet) to record every drink. In time I began to learn how to say no to that glass.
Don't get me wrong, this is not easy at all and takes a lot of effort, but in my case the effort was rewarded with lower complications.
Good luck :)
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Ianch, I thought you did home dialysis, correct? Well my situation is a little different. The more fluid I drink and cleaner my blood gets. I'm on NxStage and notice this as I take of 1- 2.5 Kilos of fluid. When I remove 2.5 Kilos of fluid the machine clean my blood 85 percent, 2.0 Kilos, 84 percent, and 1-1.5 Kilos, 83 percent. So it all depends on the person.
However, when I was in-center, fluid do build up after time because I was only dialyizing for three days per week. When I first got on NxStage from in-center, the machine removed 20 Kilos of fluid within two weeks. Yes, I said it correctly, 20 Kilos of fluid which is the reason my blood pressure was still high. I was on four different type of medications. Now I do not take any blood pressure medication at all. Praise God!!! I have not gain that much fluid or close to it since I've been on NxStage. :2thumbsup;
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Hi cdwbrooklyn, correct I am homeD but not every day. This is not recommended in my country. However my fluid target is 2.0 which is 1.0 per day so its pretty good.
I'm not quite sure how blood can be 'cleaner' with more fluid unless the formula being used includes fluid removal. I haven't directly mentioned clearance as it is true every person achieves a difference clearance but not sure the logic stacks up here (I could be wrong).
However at a NZ health board level sodium appears to be a target. Those in charge of policy here were looking at whether to reduce the sodium in session so that patients left with a low concentration. The theory was that if patients dont manage their own weight gain properly then the state will try to force it. I've campaigned against it being a policy for all because in me a low concentration caused extreme cramping. I don't know whether it was implemented at a trial level. The challenge I accept is that some patients here come in at 4l over each session and the health ministry wont approve more than 1.0 removed per hour.
I would say your targets are pretty good also. Because I don't do daily (I assume you do) I need to put more effort into it.
I do respect that everyone differs in how they experience this journey but I thought I could add value in this topic as I have been praised for my achievements in that I only remove 200ml of fluid per hour and filter 144 litres of blood per session, or 171% improvement over a standard in-centre 4hr session. That is estimated over a month to replace 20% of my kidney function (in-center target here is <10%). I believe NZ clearance targets are slightly higher than the US (1.3 verses 1.2?).
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Fluid restriction blights my entire life and i only use a little salt in cooking (never at the table) because I get more cramp if I don't have a little in my diet!
My mouth is always dry.
I try to limit my drinks to a few mouthfuls, and to crunching (very noisily) on baby ice cubes!!!!
But I am always lusting after a coffee, to get me going... a long tall glass of iced water in the heat or a relaxing glass of cider with my lunch...
There is no real answer to this problem.
Now I have a new fistula (currently maturing in my left arm) once it is up and running I hope to transfer to home dialysis and the ability to have shorter, more frequent dialysis to allow more
fluid removal. They say if you don't drink enough it affects brain function... Hmmmmm ???
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Sugarlump, Id recommend you try nocturnal HomeD as the longer hours may assist in lifting some of your fluid restrictions. 8+ hours with a slower pump speed lessens the pressure on the heart and also removes different types of toxin that short hours cant remove.
I thought my 2,000 filtered litres per month was good as it gives me 20% replaced function, yet another member of this site apparently does 4,000 litres per month that would replaced 35%+ function.
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Wow!!!!
That's some clearance!!! I currently manage 70 litres a session, three times a week, in centre which is only about 850 litres a month, not allowing for blips!
Sadly in England, we are only allowed to home dialysize when the centre is open (7am-midnight) which excludes overnighting!
That's something to campaign for :2thumbsup;
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Home dialysis when centre is open? Interesting. Very different here. After being trained in training center we are required to do an overnight independent assessment in a training 1-bed unit. The next day the trainers review with the goal of recommending to management that the person is discharged to their home. Thats right, discharged into our own care.
Good documentation and support services are provided. There is one tech on-call every night but they don't visit outside business hours, as with independents most issues can be resolved over the phone. The machines warn if treatment cannot occur and in that case the training center has provision for independents to dialysis there the next day while Frenensuis tech comes onsite to resolve issue.
So absolutely campaign for session freedom. The machine is in your home and assuming it is configured for long-hours your rules should apply. I dont buy the liability rubbish. They are also not liable for all the complications they cause with their sub-standard treatment plans. With nocturnal homeD you can within reason tweak your plan to your requirements. I.e. I know 2.2 litres fluid is my safe target and 240 pump speed for 10 hours gives me a good clearance with almost no complications.
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Home dialysis when centre is open? Interesting. Very different here. After being trained in training center we are required to do an overnight independent assessment in a training 1-bed unit. The next day the trainers review with the goal of recommending to management that the person is discharged to their home. Thats right, discharged into our own care.
Good documentation and support services are provided. There is one tech on-call every night but they don't visit outside business hours, as with independents most issues can be resolved over the phone. The machines warn if treatment cannot occur and in that case the training center has provision for independents to dialysis there the next day while Frenensuis tech comes onsite to resolve issue.
So absolutely campaign for session freedom. The machine is in your home and assuming it is configured for long-hours your rules should apply. I dont buy the liability rubbish. They are also not liable for all the complications they cause with their sub-standard treatment plans. With nocturnal homeD you can within reason tweak your plan to your requirements. I.e. I know 2.2 litres fluid is my safe target and 240 pump speed for 10 hours gives me a good clearance with almost no complications.
That's very interesting
We aren't even allowed to dialyse at home on a Sunday because unit not open!!! which means if you have had a good Saturday night, you can't play catch up til Monday at 7am!!!
I am waiting for fistula to mature and work fully, then we should finish our training and can have machine installed at home. Partner only has to really learn the needling now and a few more, what if situations but he is a pretty cool guy, calmer than the dialysis nurses in the unit!
How often do you get your supplies delivered and how much storage space do they require?
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Hi Sugarlump, Bearing in mind we use (In the north) Frenensuis, the equipment is reasonably weighty in size. Orders are monthly. We have a phone in date and a delivery date. I use email. Stock is to last 6 weeks here in case of supply disruptions (100% of Gambro South islanders are at home and area is not urban).
I have an 800 * 800 * 2.3m cupboard for stock and its pretty full.
We are designing a new house at the moment and as for me Dialysis is a big part of my future, the infrastructure will be built into the house. Because Frenensuis requires and RO machine for water quality I'm putting all pipes into the walls so that the two machines do not need to be together. The ensuite will have an RO housing and a stock room as well as a small supply lift as its a two store house (concentrate boxes as heavy). There will be a built in generator as solar wont power these beasts, and backup water.
Sound paranoid? hehe Well last week NZ had 667 earthquakes, and my city sits on 50 supposedly extinct volcanoes. But mainly because our super city of 1.5m (9 cities rolled into 1) only has at best 4 dialysis centers so I doubt can absorb all independents at the same time.
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Hi Sugarlump, Bearing in mind we use (In the north) Frenensuis, the equipment is reasonably weighty in size. Orders are monthly. We have a phone in date and a delivery date. I use email. Stock is to last 6 weeks here in case of supply disruptions (100% of Gambro South islanders are at home and area is not urban).
I have an 800 * 800 * 2.3m cupboard for stock and its pretty full.
We are designing a new house at the moment and as for me Dialysis is a big part of my future, the infrastructure will be built into the house. Because Frenensuis requires and RO machine for water quality I'm putting all pipes into the walls so that the two machines do not need to be together. The ensuite will have an RO housing and a stock room as well as a small supply lift as its a two store house (concentrate boxes as heavy). There will be a built in generator as solar wont power these beasts, and backup water.
Sound paranoid? hehe Well last week NZ had 667 earthquakes, and my city sits on 50 supposedly extinct volcanoes. But mainly because our super city of 1.5m (9 cities rolled into 1) only has at best 4 dialysis centers so I doubt can absorb all independents at the same time.
Hey Ianch,
I am also dialysing in Auckland. We use Gambro, I am in the CMDHB area, and dialyse in Calvert House.
You mentioned RO's so I'm assuming you're on HD? I know ADHB use Fresenius - but you mentioned a Gambro delivery? I'm just a little bit confused by it. :) Don't mind me. I find the fact that different units use different machines interesting. I know that in CMDHB use Fresenius in AMC and also in Rito (at the Superclinic) as that is for more Acute patients whereas the at-home/in-house patients use Gambro. I know that Auckland Hospital use Fresenius also. And that's just Haemo. For PD CMDHB use Fresenius, while Auckland use Baxter.
You mentioned Nocturnal? I thought that was dangerous? How do you work with dialysis? And, if you don't mind me asking, how frequently do you dialyse and for how long?
I'm 3xs a week 3.3-5 hours at a time (depending on fluid intake etc, I make up any time lost).
Sorry about all that - I just got confused :/
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Hi AntNZ, Sorry for the delay. I don't log onto this site very much any more. It has a different focus to the kind of support I seek and offer.
You are correct that different parts of NZ and Auckland have different suppliers. Frankly it bemuses me given all health boards are funded by a single entity (the health ministry). Economies of scale suggest a single contract would be beneficial.
I am under Waitemata and they I understand primarily use Frenensuis both for home D and for the North Shore Satellite unit with 24 bays. Unsure what the new unit in Albany will use but I would assume Frenensuis.
In respect to HomeD. Whether you qualify is up to your team. Your ability to be independent is a factor, but no its not dangerous. I dialysis 10-11 hours per session, every 2nd day. Pump speed is lowered to 225 to reduce pressure on the heart and to conduct a deeper tissue clean. This is best practice although 8 hours is fine or 5-6 every day.
My treatment plan works well with my employment. Assuming i stick to targets then I am 95% fine within 30 minutes of coming off and at work soon after. I have a well tested bloodline wrap that stops the lines from dislodging. In fact i can give it a really strong tug and the loop absorbs the pressure.
Id encourage you to contact me directly at ianc@chitty.co.nz, and even visit us at kiwimedtec.com
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Salt is the key. Don't eat any. Use Mrs. Dash for flavor on your food and pepper is okay. Sweat is fluid so when you sit outside and sweat you get to drink a little bit. It is hard. Don't eat salt. Look at labels for sodium.... You can have about 1000mg for the whole day. A can of soup may have 700mg.
They say you can gain .03% of your dry weight. So between sessions if your dry weight is 100kg you can gain 3kg. If your dry weight is 50kg you can only gain 1.5kg. I'm usually over!
Actual size.... :beer1;
Hi rerun i am allowed 1 liter a day between sessions my dry weight is 95 kilos since i started that has been my daily limit even when i weighed 111 kilos so i am liveing on ice cubes
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i bought a portable domestic ice-maker on ebay and it is my new best friend!
Crunching on a handful of ice cubes refreshes you more than 100lm of water
and I use bottled water only. :2thumbsup;
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put away all the tall glasses. use 8 ounce cups for breakfast dinner lunch, and suck on ice cubes in between, or lemon slices,it creates saliva. use salt on Nothing, dont eat salty foods.
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put away all the tall glasses. use 8 ounce cups for breakfast dinner lunch, and suck on ice cubes in between, or lemon slices,it creates saliva. use salt on Nothing, dont eat salty foods.
Right on!!
Rerun, Moderator
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Yeah i am with you on that but what about when you really really really want a glass of cold cider or a diet coke over ice.... ::)
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I say go for it, just sacrifice or drink less at other times. just keep track of how much youve drank