Kidney Patient Guide

I have posted on here only a few times with various questions relating to my dad and have a couple more to ask of you all if I may!

My dad started CAPD in March and has had a few teething problems to say the least but all seemed to be going well at last. He had the results of his first PET test a couple of weeks ago and apparently all were good. However, his drains seem to fluctuate quite a bit, he is on 2L yellow bags four times a day and some days he drains out around 2L each time but then he has a few days whereby the drains are less (ie. Between 1.5 - 1.8L). Is this normal? He asked the PD nurse and she didn't seem concerned. He drains fairly quickly and is definitely not constipated.

Recently too he has experienced swollen ankles, I know this is a sign of fluid retention but his dry weight of 81k is usually there or thereabouts, may increase to 82'ish but then goes down again. He does have about 8% residue kidney function left. He has never been one to drink much water or fluids so could his body be 'taking' some of the dialysate to compensate? His blood pressure is okay too. Would the recent humid/hot weather have an effect?

Many thanks in advance.

Hi,

It could be the transportation of fluid back and forth through the peritunium, if his dwell periods are not consistent then it could be possible he absorbs some of the dialysis fluid. Maybe ask to see if another fill/drain would help keep things consistent?

I'm on APD. During the recent hot spell, my overnight UF was negative for a couple of nights. My nurse wasn't worried and she did say that it could have been because I was dehydrated.

Thank you both for replying.

Rheaybou - I do hope that won't be needed, think an additional drain would finish him off

Dibs - That was interesting to hear. He has drunk more water since I last posted and his drains have increased to 2L plus. However his feet and ankles are still swollen but his BP is fine. I do think this hot weather has an effect a but I still think he may be dehydrated. Unfortunately he has been treated for another condition (unrelated to PKD) and this involved the taking of enemas and the actual procedure has left him with unpleasant side effects involving the bowels. I did read that the body will store what fluid it gets and will only release that fluid once the body is hydrated again.

When he asks how much he can drink the hospital is quite vague and just says 'not too much'. He still has some kidney function. Out of interest how much do you drink a day? Would really help to know how much water people drink whilst on CAPD or APD, although I do appreciate that everyone's case is different.

Many thanks, once again.

Hi
If your father has only just had the PET (Peritoneal Equilibration Test) then this is still quite early stages of determining his therapy regime. In my case, I started my CAPD in October 2013 (once the Tenckhoff catheter inserted in early September had settled/sealed) but it wasn't until December that I had my PET which determined if I was suitable for APD. It was only at this point that the long term PD therapy regime could be properly planned. Moving from manual exchanges to the Automated machine (running/exchanging fluid overnight) was a BIG improvement in my life at the time.

I assume your father is currently exchanging every 6 hours (as the yellow fluid I started on should not be left longer) but if APD is on the cards then he may be moved to another dialysate not based on dextrose and which is designed to have longer dwell times (up to 16 hours for the Baxter's 'Extraneal' solution that I was on).

Hi jOhnr
Yes he is doing four exchanges a day every 4-6 hours. He has another PET test next week and I wonder if that is to start the process to move him onto APD as that has always been the intention. His drains have improved but he still has swollen ankles. Hoping if he drinks more they will reduce but he hadn't been given any specifics as to how much he should be drinking. It's one hurdle after another. Thanks for replying.

Hi Pinkdiamonds14,

First thing to understand is Dry Weight is an intelligent guess, and will be adjusted as dad stabilises.
With PKD kidney output tends overall to fall as the blisters squeeze the kidneys making them un-able to work, this of course requires more fluid to be taken off.

I think, many dialysis teams tend to aim at a little fluid left (swollen ankles) as hitting a fluid balance is very difficult, and erring on the low side (dehydration) is bad for the patient, and the borderline symptoms are un-clear.

Swollen ankles is an indicator of water retention. I am a little surprised he is not on diuretics (water pills) to push the kidneys into more action. The motivation for using diuretics is to enable a higher water through-put by the kidneys with the patient being encouraged to drink more. This helps to remove some of the waste dialysis cannot deal with. However, his doctors see the full picture, we do not.

Hi Wagolynn
Thank you for your responses to both my posts. Certainly his first port of call was to speak to the PD nurses regarding fluid intake but their answers have been quite vague so I was just trying to get an idea of others consumption. I don't think he drinks enough and I have read that not being hydrated can cause low and inconsistent drains plus swollen ankles and low blood pressure. He is on water pills although he has only been prescribed these in the last month, maybe a higher dose is needed? I assume this hot and humid weather is not helpful either. However he has another PET test next week so I am hoping he can discuss all this at the same time. Thanks again for you input, it is much appreciated.