Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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rogerjd 04/15/2012

Can anyone help me- I can't seem to get straigth answers from specialists.

I have joined weightwatchers mainly to support my daughter but I do have weight to lose.

I am on hemo dialysis but have no kidneys so do not pass any fluid. Each dialysis session I maintain my 'base' weight at 75 kilos. This is supoposed to be my dry weight so the excess I am taking off is fluid.

Now that I am on a diet and sticking to it will my dry weight fluctuate on its own????? To lose weight I thought you had to do it by passing broken down fat in urine/stools. No one can seem get their heads around it.

I have planned to work on a supposed weight loss of 0.5 kilos a week and plan to reduce my base weight weekly by this amount. Anything more than this and I would be worried about making myself too dry which in turn could cause severe symptoms.

I stood on the scales today before my dialysis session and I was 75.2 kilos. This really surprised me because yesterday after dialysis I was at my target of 75.0 kilos and I know for a fact that I have drank more than a kilo in fluid since then. In fact, daily I usually take off about 1.5 to 2 kilos to get myself back to 75.0 but today this was 0.2 kilos. I am very confused now. My husband says that your body burns energy, which I knew anyway, but he recknons the fat would just disperse and disappear. Does anyone know? I can't get any straight answers from the nurses and my doctor doesn't know either.

deleted_user 04/17/2012

You lose weight by taking in less calories and/lor expending more by burning energy. Yes, if you lose body weight dry weight will need to be adjusted because the portion of your body that is weight/mass is changing. You will still take off roughly same amount of fluid, depending upon how much fluid you take in. People on dialysis lose weight the same way that anyone else does. Good luck.

Chewitt 04/18/2012

Hi Julie,

I can't help with the questions about dialysis, but the mayo clinic has a brief, clear explanation of what happens to fat when you lose weight -

www.mayoclinic.com/healthbody-fat/AN01327

This may or may not help. Would a renal dietician be able to advise?

Hope you can sort this out.

Chewitt

rogerjd 04/18/2012

Thanks for your replies.
PkdLin- I think I know what you're saying, but by adjusting my dry weight this means I will have to incease the fluid I take off. I have looked at the site that Chewitt provided the link for and it says that your fat turns into fluid and carbon dioxide which you either lose by urinating, sweating or breathing. Obviously I don't urinate so I need to increase the amount of fluid I am removing little by little each time I dialyise because although I should lose some from sweating and breathing - I imagine this to be a much smaller amount than with urination. It makes better sense now- just no point getting weighed in every week!!! Thanks so much for taking the time to reply x

deleted_user 04/21/2012

Don't make it more complicated than it is lol When you lose weight you will experience symptoms on treatment that signal staff to adjust your goal, and then ultimately your dry weight. My dry weight is 71.5 but I've gained some body weight so they can't take me down to 71.5, only 72.0 now. When you are losing weight they will not take enough fluid thinking that you didn't gain any but you are losing body weight not fluid; you will start to show signs that there is fluid on your body with swelling in legs and feet, and/or fluid in lungs. Your dry weight will have to be adjusted down so that they take enough fluid. Your dry weight is your REAL body weight, without excess fluid that you gain from kidneys not working and retaining fluid. Your body still will have the normal amount of fluid that others have, or at least it should. You gain and lose weight normally, and it has nothing to do with dialysis. Dry weight is not static because most people will naturally lose and gain weight over the course of time; it's just that the population at large doesn't realize it the way us dialysis pts. do. Good luck with losing the weight. After years of being on dialysis I slowed down and gained weight, but have lost it now and down to size 8. My dry weight has slowly gone down. Lin.

rogerjd 04/21/2012

Yes thanks pkdLin I think we are on the same page. The only difference is that I do home dialysis so I am in sole charge of my weight changes so donlt rely on any staff. Thanks anyway Julie x

deleted_user 04/21/2012

In that case hope that you have a good scale and use it faithfully, the same as you would if you were in a dialysis unit.
I first gained weight and then lost a lot so my dry weight over the years has bobbed up and down.

rogerjd 04/22/2012

Yes I have a pair of hospital scales that they provided. As I am on this diet and sticking to it I am working on the principle that if my 'weight' fluctuated on its own I would lose at least 0.5 kilo a week. All the others in the class are losing far more than this. So I am reducing my base weight by this much every week- I use my blood pressure changes to guage it.

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