how do others cope on low fluid restrictions

[ctlau]

I am on dialysis 3 times p/w. I have to limit my fluids to 500mls daily. I really struggle at weekends and would love to hear how others cope.

[ChrisS]

I struggled too , my solution with my renal unit was home heamo dialysis 5 times a week , moving to nocturnal dialysis, this allowed me to drink a little bit more .. but not too much , and solved the problems of weekend gains. Just a thought

[ctlau in reply to ChrisS]

Thank you for replying. Yes my Consultant has suggested home dialysis but I'm not really in a position to consider this at the moment. Thanks for your reply though. It really helps to know you arent alone.

[Advocacy_NP]

Hi ctlau. The fluid restriction is a real struggle and I sympathise having previously done haemodialysis for a number of years.

One of the key things I found was being really careful about salt, and hidden salt in breads, cereals, biscuits etc.

I'd use ice cubes to quench my first towards the end of weekend break - but limit them.

I exercised quite a lot, and was busy which may not be for every patient but it kept the fluid weight down.

I sometimes came off under my dry weight before the weekend break which gave me a little extra fluid allowance but this can sometimes leave you with a low b.p.

If I wanted a fizzy drink I'd buy the 150ml cans in the supermarket; have a smaller cup at home for hot drinks.

Also remember the hidden fluid in food - sauces, rice, vegetables, ice cream etc.

It sounds like you keep to the fluid restriction most of the time which is good - one of the key things to staying healthy, well on dialysis and giving yourself the best chance for a transplant is to manage the fluid restrcition well.

Hope this helps and I haven't told you what you may already know!

Good luck & best wishes.

[ctlau in reply to Advocacy_NP]

Thankyou for your reply.Its great to hear I am not alone. I do most of the things you have suggested but by Mon am I feel pretty desperate - so thirsty. In for dialysis this pm. I was interested in your comment re exercise and I am trying to get out for more walking. May I ask whether you ever had a holiday abroad. We are considering Tenerife but I am concerned how I will cope with the fluids. Its great to hear you sound well. thank you again for your advise.

[Advocacy_NP]

It's good that you're getting out and about walking - every little bit counts, and it can certainly lift your mood, especially on a lovely sunny day like with have today. Like everthything the more you do the more you can do - it's about positive thinking; I appreciate we all have our down days and days when we feel exhausted - but staying as positive as possible really does help.

Yes I have been on holiday dialysis, Majorca & mainland Spain - I loved it and went away with supportive friends. After dialysis the warmth of the med climate is a great antidote to the coldness that dialysis can sometimes bring to your body!

You may well find balacing your fluids easier while away in a hot climate - while you always have to be careful not to get dehyrated (with regards to your fistula) you should find it easier because you'll obviously lose fluid through perspiration. So I'd definitley say fear nothing and take the holiday that you deserve!

[ctlau in reply to Advocacy_NP]

Thank you.. You sound so positive and this is so helpful.

[cookiemoot]

i used to find my fluid restriction in the unit hard to cope with (im now on home heamo 5x week and its a lot easier) i used a very small cup (expresso coffee cup mine only holds about 100ml) and had to be strict about only having a drink every 2-3 hours - ice cubes are great - i would put a couple in a glass and let the melt just drinking the 'melt water' which could last for a while and helped a lot also fruit/salad (not too much but occasionally throughout the weekend) especially iceberg lettuce, apple and cucumber. it is very hard to do though and we all struggle at times. hopefully it will become easier though it took me a very long time to get my fluid under control (about 3 years!!) keep going with it though x

[ctlau in reply to cookiemoot]

Thankyou. I really appreciate the reply. Ill just keep working away at it. Have to say I cope reasonably well through the week. It is just weekends that are a struggle. I will try the fruit salad. Good luck on your home dialysis. Thanks again.

[coaching]

Hi there,

Everyboby struggle with fluid overload during the w/e because it a 2 days gap. I have been on dialyse for 20 yrs now, have had CAPD and hemo it was was always a struggle. You are not alone, try not to let it occupy your whole life if you are thirsty drink something that will not make you drink more and drink it slowly, enjoy your drink and over time you will learn to listen to your body and control certain things.

Hope that helps.

Oscarine

[ctlau]

thank you for replying. Its really great to hear from people who really know what it is like - it makes you realise you arent alone. Thanks again.

[Timbles]

Have you considered APD or CAPD as a means of dialysis? I do APD and find my fluids are well managed as you are Ultra Filtrating 500ml - 10000ml + per day, 7 days a week. The freedom it gives you is amazing also. I work full time, study, play in a band and raise a family all because I dialyse overnight. Ask you consultant for details.

[ctlau in reply to Timbles]

You sound so positive. Itis great to hear. My consultant has been trying to push home dialysis with me. Peritoneal isnt an option for me but I will have achat to her. Thankyou. I feel I am coping really well but I really struggle at weekends with the fluid thing and it is affecting my social life as I just cant go for a drink at all - unless I cut out my smallcups of tea throughout the day!

[hedgepig]

I have been on haemodialysis for a few months and found everything easy to cope with except for the fluid restriction which I found impossioble. However, it has now come into place and i have no problem. It is a combination of avoiding soup and ice cream and jelly etc at the same time and having smaller cups of tea and avoiding salt that makes you thirsty. Take special care during the trhee-day gap with dialysis at the weekend. Note; I understand that continental dialysis takes place every two days whatever the day of the week. That makes things much easier.

[NurHossain]

Drinking in a glass is not so good idea. Perhaps you can try drinking in small bottle of 250 ml or 500 ml. that will help you drink less and also you will have a batter idea about how much you drunk in between two dialysis.

Thank you..

Wish u will manage all this easily.

[Hardworkthisbeingpoorly]

Hi , you are not alone with the fluid restrictions I find it very hard to keep to 1.2 liters a day but I fill up a bottle that holds 1 litre and I pop it in the fridge the night before, when I get up the next morning I put it in the soda stream as I find fizzy cold water is the best thirst quencher. I am also diabetic and again struggle when my blood sugar levels go up as it makes me want to drink even more . I can usually work out how much to drink throughout the day in order to have enough to last me through the day ! If I drink it all I resort to 2 or 3 ice cubes they help greatly . I also find that going to the gym 3 mornings a week helps tremendously , it helps with blood pressure it helps with fluid overload and working up a sweat is also good as well. I am also working part time in a busy McDonalds Restaurant as a manager this too helps to keep my mind off drinking as well . I'm on nightly PD which is fantastic for my lifestyle I can still fit most things into my lifestyle. But keep at it it is hard but it is all worthwhile in the long run , you stick to being positive and it's much easier trust me don't let it get you down because I've been there and it's not a nice place to be . I am still paying for it now as I am trying to loose the weight I put on from taking anti depressants and I have to loose another stone before I can get un suspended on the kidney pancreas transplant list . Be determined ,strong and ask as many questions as you need to we are here to help

[ctlau]

Thanks for your helpful reply. It sounds as though you are very positive now and lead a busy life. I have no kidneys and try to manage on 500 mls a day but I stlll managed to go in after the weekend with 3 ltrs on board! I do measure my fluids but I must be doing something wrong. I'm going to try writing anything liquidy down this weekend. Your comment re exercise is somethhing I should address. I don't do enough of it! thanks again.

[Hidden]

if you check with your dialysis doctor you may be allowed more fluid depending if kidneys still working or not.i have been told to do 500ml a day but as i am still passing water have been told as long as i monitor what output i am getting that i can drink the equivalent of my output on top of the 500ml.you do have to be careful though because some days pass water ok and regular but other days dont so i am always wary of fluid intake.

[Jakjak]

I suck (not eat) oranges, drink diluted barley lemon which is a bit tart so you tend not to drink so much, and use a straw which slows your drinking down. Hope it helps

[bella1999]

That's a really tough level to stick to. I suck the kids lollies. You know the ones - they are the shape of milka lollies but are made from fruit juice. They are only about 50 mls maybe even less and last longer than a drink and are much more satisfying. I also suck sugar free polo mints too if my mouth is dry.

[cassie-brzoza]

The fluid restriction is also something I'm struggling with. I spent my whole life being told to drink plenty because of recurring UTIs and kidney infections and now it's the other way round! :/

I have found buying small ice lollies sometimes helps. It gives you that refreshing taste you crave and is not as much liquid as you would drink from a glass. Also take some pineapples (del monte from a tin) and freeze them in freezer bags. Whenever I get the urge to have a drink I just grab one and suck and eat them and it relieves the thirst a little and again is quite refreshing.

The weekends are also harder for me, especially if I'm out and about or having a meal etc. I try to just have a few sips in the morning before I go out so that it allows me to drink more during the day.

Definitely not alone with the fluid restriction woes though. I think over time, you do get used to it and it becomes easier. Also you will notice the difference to your health if your weight is lower and blood pressure is down.

[Hidden]

i make flavoured ice cubes - orange, lemon and find that sucking on these helps.an average ice cube chunk will be about 30ml of liquid so remember to work it in your allowance.

[poppydolly]

I also have no kidneys, but my daily allowance is 1000ml and I find that difficult so can't imagine what it must be like to only have 500ml. I th I nk over time you become accustomed to it and prioritise what you really want to drink, drink it slowly and enjoy. I enjoy a drink when I go to bed so make sure I save enough allowance for that. I used to enjoy a cold glass of milk at bedtime but had to give that up because it was affecting my blood results so it's not just how much you drink t h at counts. I do not find that exercise helps because it makes you thirsty and when you see others around you glugging down drinks without a thought of the amount makes me jealous. I think when you are socialising or on holiday are the hardest times. I am going on a cruise later this year and I am not looking forward to seeing others enjoy the vast array of liquids on offer. But I guess I should think myself lucky that I can enjoy a whole litre a day😂

[Hidden]

I use a shot glass at home, (about 30 mls) ask for small (kids sized) glasses when eating out.

Avoid salty and processed foods. I love my cheese, and goats butter (lower in Phos) but both tend to be a bit salty..So tend to slice thin at home, or use grated cheese as a topping to cottage cheese in sandwiches. Good quality cottage cheese is tasty and doesn't have a lot of salt.

I'm home heamo however which makes it easier..

As for hols, I found Rhodes to be quite beautiful

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