well i haven't done an update for so long, sorry, but it has been a bit busy, jack was poorly in hospital, then i was ill with insect bites cause i am allergic, then the dog very nearly died and my grandad died on saturday, i tell you, it doesnt rain it our house! we have storms!
well we still have no date for the translant, we were told in march it would be june, in june it would be july august, in august we were told september, but the transplant co ordinator said she doesnt yet have any dates! and we just have to keep waiting, it is so frustrating.
some people have asked or commented on the fact that they didnt realise how invasive dialysis is, so i thought i may have a go at trying to explain, a little, in normal language, after all i am no doctor, so i will apologise now if i spell anything wrong
well there are 3 types of dialysis, hemodialysis, which is done at hospiatl or at home and uses a very complex machine that cleans the blood, this is generally done at the hospiatl everyother day, the dialysis unit give people time slots and they arrivem get attatched to the machine finish and go home, they are weighed before they get on the machine, as the patients all have a "dry weight" which is their weight when they first started dialysis, and by weighing everyday the nurses can tell if somebody has fluid weight on them, as this isnt good, the patients can drink between 600ml to 1000ml(1 litre a day) as they dont wee very much, so any fluid they drink stays in their body and every other day on dialysis they have it "pulled off", if they drink too much(2 kilos is normal to be pulling off, a kilo equals a litre) and need more than 4 kilpos then it can make them quite ill on the machine, feeling sick, dizzy, headaches and tunnel vision, and it makes the heart work harder to drag the fluid off, so its best to stick to the restriction, and fluid includes not just drinks but yoghurt, ice cream/lollys, custard, gravy, curry and alot more, so patients like to have ice cubes to put in their mouths as its a small amount of fluid that lasts a while.hemo can suit some people and not others, as with all types of dialysis, it depends how you attatch to the machine, which can either be by a tempary line in the neck or groin that is put in under local or general anesthtic, that line is the attatched to tubes n the machine and can last for 2 weeks before it needs changing, or you can have a tunnel line, which is permanent and will go into the side of your neck down into your chest to the main arterey, and then this is attatched to the machine, both of these have the added risk of the lines getting infected or clots forming, so they are flushed each session to try and prevent it, and re dressed as it is like an open wound all the time.
then there is capd dialysis,you have a pd cathether operation a few weeks before where they insert a tube into the abdomen that comes out on the outside that you attatch to, inside it is attatched to the peritonium, and that is where the fluid sits and dwells, the exit site of the tube has to be dressed and cleaned every other day to prevent infection, but the dialysis which is done by having a heating machine at home and lots of deliveries of fluid like in the pic above, which can be a pain at times, but its not too bad i suppose, so you put the bags of fluid in the machine and it warms them through the day, then 5 times from when you wake until bed time you go to the room you do dialysis and sterilise a work surface and attach yourself to a bag of fluid, which also has an empty bag attatched to it, so firstly you would drain the fluid from your abdomen from your last session, into the empty bag, then hang the new warm fluid up a drip stand and allow it to drain into the abdomen, the bags of fluid are 2 litres each, it stays inside until next session taking the toxins away, so the fluid goes in clear and comes out like a wee colour, when you attatch to the fluid bags there is alot of alcohol hand rubbing after each thing you touch to prevent infection, after each session you take the bags to the bathroom take off the clamps, tip the fluid down the loo or bath and then put all of the equipment(bags, sheilds, caps etc) into a yellow bag and they are collected by the clinical waste department once a week, it is a gentler way of dialysis, but the food restrictions are alot more as it doesnt take pottasium or phosphate out like hemo does so it can make you ill in other ways.
then there is apd, which is a machine that you use at home at night for 9 hours, it is quite big, you have pd cathether in the abdomen again for this type and the deliveries of fluid and equipment the same, you leave the machine on all day with 10 litres of fluid warming on it, then at night when you go to bed you go through the sterilising process and attatch yourself to the machine(it takes 15 mins approx to set up the machine putting in new "casettes" that the fluid travels through etc, then when you are asleep the machine will first drain the fluid it left in on its last cycle when you came off the machine in the morning, then it will pump fluid into you, and it will dwell for approx 1 and half hours, then the machine will pump it out of you and refil you again it will do that for 9 hours and in the morning you attempt to carry 10 litres of fluid to the bathroom! that can be fun! the only thing is that the machine can be noisy with the sound of the pump so can disturb your sleep sometimes, and if it needs to alarm in the night! wow it is loud, but it has to be to wake you up! plus if anything goes wrog in the night and believe me we had lots of problems, then there is no one to speak to, so you have to guess and hope you are doing it right, as the ward that looked after us was only open mon-fri 9-5 so at night when we sometimes needed someone we were left to it, plus the most important thing with the machine is that it is programmed to the patient, now on this and capd the patient does have more "urine output" so they may have lost half the fluid in the day, but te pump will keep pumping to take a litre off each night or more sometimes, and that caused alot of oain and referred pain and we ended up with paramedics in the bedroom on many accasion treating him for a heart attack! due to the referred pain, that was very scary!
so there are the 3 type, in my language, hope that helps x x x
