sharing of PD experience

Hi,

Your creatinine is nod bad at 220 mine was 680.  Dialysis won't stop your kidney function declining, nor will it stop your creatinine rising.  So long as you understand that then you won't go wrong.  Dialysis is just removing the toxins from your blood but it also removes good stuff as the machine and fluid can't tell the difference.

The amount of fluid you have depends on a lot of factors so just because your friend has 2ltrs doesn't mean you will, but you need to have enough so you have enough clearence.  If he has it in during the day he has something called CAPD which doesn't involve a machine it is put into the body manually from the bag using gravity.  An amount of fluid is put in the body called the fill, then it is left usually for four hours, this is called the dwell, then it is manually drained out into an empty bag called the drain process.  The whole thing is then repeated.  If you do it over night it is done with a machine and it is called APD.  You have the same process but the machine pumps the fluid in, then the machine dwells for however long it was set up to do then the machine sucks the fluid out.  My fill was 800ml dwell for 39 minutes drain and then fill again for 10 cycles each night, some people have some fluid pumped in for the day but I couldn't stomach this so did without this bit.  It is very much tailored to the indervidual.  When you first have the fluid in during training I had a litre but couldn't breath that is why it was changed to the 800ml it feels like you have eaten a really big dinner but it should not hurt you, and you get used to this feeling in time.  When the fluid drains out sometimes not always as the machine sucks to try and find all the fluid it gets stuck on your insides and this does hurt a bit, it feels like a stitch that doesn't go away but as soon as the machine starts to fill again it goes.  The machine can also be set so that is always leaves a bit of fluid in you so the machine stops searching for it at this point and this stops the pain.  I had it for about 3 months then it went but we are all different and you may not have any at all.

As long as you have not had stomach surgery before there is no reason why you can't have a go at PD and the benefits outway the issues.

You have to be very clean though I can't stress this enough, you need to wash your hands like you life depends on it because it does and do exactly what you are told.  You can get something called peritonitis which can be fatal if not treated quickly.  To avoid this be very clean and tidy don't let anyone else touch your stuff and keep you catheter site clean and dry.  I was lucky having OCD I avoided this but you can get it even if you are careful.  The things to look out for are a rise in temperature, stomach pain that moves from one side to the other and cloudy fluid in the drain bag.  I am not telling you this to scar you but you need to know what to look out for and if you are ever in doubt go and get the fluid tested.  If you get this they need to give you antibiotics directly into your stomach asap.  You also could get something called fibrins in your drain bag these are like big stringy pieces of cotton wool these can block you pipe and stop the drain causing the machine (If you use one) alarm.  This is easily treated will viles of heprin and this is cleared up staright away.

Once you do it its like driving your car, if you GFR is 22 you are quite away from dialysis at this point so don't worry and enjoy life for the time being.  You are in the limbo part where you are sick, but no sick enough for dialysis.

Hi there I started CAPD on Nov12th 2016 scary. at first its very overwhelming but after a couple of days you get used to it. Ive not had all plain sailing, had probs with blood pressure dipping and bad shoulder pain but,it is getting easier. I'm trying to make it fit in with my lifestyle although I am still off work! Next week I'm trying the overnight machine so I'm hoping it will be better. My gfr was 8 when I went on dialysis cret was 500 but I felt really well! Weird!! Good luck Jacki x