Confused about fluid restriction

[Charlene_Coxhead]

Hi all hope you are all doing well

My gfr is 7% and not on dialysis but have my fistula ready for action. For the last 15months I've been on fluid restriction of 1000mls and 160mg of diuretic. All was going well until the last 10 weeks and all I seem to do is gain fluid.

Saw my consultant Wednesday and now been restricted to 750mls and 240mg diuretic and have two weeks to lose the 8lbs.

What I'm finding confusing is when it comes to pasta, rice, risotto do I just avoid them completely as they absorb water and guessing this all counts if yogurts, jellys etc count.

How do you all get around this? or do you all measure how much is absorbed but weighting before and after cooking?

Any advice would be good as really want to get this fluid overload sorted

Thanks Charlene

[Philipjm]

Hi Charlene, all liquid counts, like my porridge I n a morning, 250ml plus a cup of tea at 200ml, have to be careful the rest of the day then, my restriction is 1.5 litres a day as I am still passing 1.5 litres a day and not retaining any fluid. Surprised you have not started dialysis at 7egfr. Mine is 8 and started heamo 8 weeks ago after 2 years on pd.

Speak with your dietician who will advise you in detail.

Hope your dialysis goes well when you start.

Philip

[Charlene_Coxhead in reply to Philipjm]

Hope dialysis is going well for you. Wow 1.5litres is a good amount I'm on half that which is why I'm finding it hard.

How are your sessions going?

What I'm finding hard is how much does rice and pasta absorb. I'm ok with cereal as you know exactly what you pour on rice is so different. Has you have the rice then the water it boils so some evaporates and some absorbs, what's the percentage?

[Philipjm in reply to Charlene_Coxhead]

Dialysis going great now, week 6, next week start my home heamo training , 5 early mornings for 5 days for two weeks.

Plumber had been to my house to install water and waste connections (all provided by our wonderful NHS)

Then will have two weeks with my heamo nurse guiding me at home then will be on my own.

There will

Always be support at the end of the phone, my renal unit uses Skype so that they can see what I am doing if need help, failing that they will come out if necessary.

I have been needling myself now ( under supervision) for a week and is working well if not a little scary the first time!!!

Have to go in next week for a fistula-gram as I have a little stenosis in my fistula.

My home heamo team are wonderful and let me go at a pace that I am happy with.

No ideas about the water in rice and other similar foods but I am sure google will help.

Hope all goes well worth you.

Philip

[Charlene_Coxhead in reply to Philipjm]

That's amazing your doing so well. I'm looking to do home haemo. Are you doing it alone or do you live with some one or got a support backup as I was advised I would need a backup.

I'm not bothered by needles and inject myself weekly with my Epo Injections but I know it's different to that.

Where do you go to the unit as it sounds very impressive and that your nurse's nurses are all in tune with your needs. Are you feeling better now your on dialysis as heard things about it being quiet a rough time

Take care

Charlene

[Philipjm in reply to Charlene_Coxhead]

Hi Charlene,

My wife will be coming to the training sessions but I will be doing the dialysis myself, my wife will be there if I need back up.

I had a few difficult moments at first but with the help of the renal team I have overcome any difficulties.

I am at the Derby Royal hospital, started in PD , they were all amazing as are the heamo team. I cannot praise them enough as they have always been helpful and supportive.

Philip

[Charlene_Coxhead in reply to Philipjm]

Glad you've got some support and back up and that your renal team have been so good. I can't fault mine either as they've kept me going an extra 18months dialysis free which is amazing

Hope the training goes well

Charlene

[Nicolala]

Things like rice and pasta do absorb fluid. I've never measured how much. I guess you could weigh it dry then when cooked. Measure all your drinks and things like sauces, gravies, custard. Jelly and ice cream are fluid too. 750mls is very strict and I don't envy you. Eating a good protein diet will help keep the fluid away from your tissues and in the bloodstream for the kidneys to filter. Avoid salty and processed foods which contain salt. Salt both increases fluid retention and it makes you thirsty. Also fizzy drinks have salt in them, believe it or not! Please ask if you have more questions.

Nikki.

[Charlene_Coxhead in reply to Nicolala]

Thanks Nikki. I was coping really well with 1000mls until I got a virus and then things went a bit wrong. I'm really good at the hole gravy, yogurt etc being fluid and the only area I had really considered was the absorbing water in on rice and pasta. It's only for two weeks to see if I can get back to my normal weight then I can go back to 1000mls and see how it goes.

I only drink water and herbal tea and can't remember the time I had any crisps or popcorn and never cook with salt or add it to my food, and done this since last year when I was first put on restricted fluids.

Thanks for the help and taking the time to respond.

Charlene

[poppydolly]

For rice and pasta, I have a simple solution. Measure how much water you start with, say 500ml, then when the pasta/rice is coked drain the fluid and measure it. If you've got, say, 250ml left, you know it has absorbed 250ml. I don't measure it every time because I cook the same amount each time so I can know how much fluid it has absorbed. Good luck. You will be fine on dialysis after you have settled down and will feel heaps better than you must feel at 7%. I started when I was at 6% and I felt like death warmed up compared with now.

[Charlene_Coxhead in reply to poppydolly]

Thanks for the advice. I was going to do something like that the first time and use that as my guide. My plan was to measure the pasta and the water and then measure it once it's cooked as thought some would be lost through steam.

Wow 6%I thought mine was low. I'm still having good and bad days. I have a potential donor so my consultant is hoping that all comes good but not hopeful as my dad was turned down last year with a gfr of 56%. So he's had more investigation done

Take care and glad dialysis is helping you feel better

Charlene