Yep another crap day

[KICKSTART]

I just feel totally flattened . Another awful dialysis session , my days off are rubbish too ! I got my morphine but even that isnt seeing me through dialysis , that last hour is still proving dreadful , but at least the morphine takes the edge off it. I still come home with that horrendous pain over my eye but not to the point its making me sick. Yesterday i had 2.1 to pull off and after two and a half hours i was totally dry and had only pulled off 1.6. I had cramp everywhere, my feet (my toes crossed) my hands (turned into claws!) i had it in my ribs , i couldnt move my head or i got cramp in my neck , you name it i got cramp in it !!!!. I turned my UF off for a while so i could refill , i was way below the 'crit line' at this time. I never refilled , i left it a good hour ..nothing i never came up, so i thought im going to be in trouble again tonight, so i switched it back on and started to pull again ..big mistake , so far it was the nearest ive come to crashing.
I have tried talking to anyone who will listen ..trouble is ..they dont ! I was talking to one nurse and she agreed the morphine is just masking problems , but still not giving an answer. Then she came up with a suggestion that even my NEPH hasnt said ! Have i ever tried HD ? ,our machines do HDF . She said maybe i would be more suited to HD as its gentler and slightly different to HDF . I said i would try anything , the only thing i have to wait and see now is , if our machines can be re-programmed to do HD or not.  I am so hoping this might work ! I cant go on like this at all. Again last night by 10pm the fluid had all shifted and to exist at the moment my fluid intake is a bare minimum. Life is just rubbish at the moment .

[RichardMEL]

umm has your Dry Weight been reassessed? I mean if you cramped up so badly and had to turn UF off for an hour, and were still dry according to the BVM why would you take more off? Can't you get your dry weight at least reset to where you had to stop? I don't know why they would make you (or you would?) continue to draw fluid when everything going on (your cramping, and the BVM) suggests you're dry?!?!!

[KICKSTART]

RM , what seems to be happening is , im pulling all the fluid out of my blood while at D , but there must be plenty in my tissues as well. Trouble is this is only transferring into my bloodstream after D , hence all my problems. I try and push myself to pull off every single drop i can while at D. After a few hours its like ive never had a session that day , as the fluid has decided to come out of my tissues and into my bloodstream. (does that make sense?)

[RichardMEL]

yeah it makes perfect sense... except most people refill much faster than that (I use profile 6 when doing BVM's and I refill pretty much during the 30 mins of "off" time). I wonder why you are so slow. I understand wanting to take off as much as you can, but if you're simply no refilling and you're "sucking dry" and causing yourself pain what's the point of that?

Have they put you on any diuretic pills like lasix or anything like that to try and help get some of that fluid out? Does the neph have ANY ideas why that would be? That would really suck.

[KICKSTART]

I understand what you are saying about pulling off when im dry , but i get so uptight about not getting any sleep that i feel i have to get every last drop off. My neph is a waste of space tbh , but i dont have a choice but to see him. The best he has come up with is the morphine. He is never on the 'shop floor' so to speak and when i see him regardless of what i say he just looks at results. Not how you do or do not achieve them. I used to be on Frusemide years ago but it does nothing for me now. I do still pass some urine but probably only a couple of hundred mls if that !  Funny really because on PD i was a fast transporter !

[MooseMom]

I don't think I've heard of HDF...how is it different from HD?

This is just awful.  I truly cannot imagine how you go on each day; it must be pure hell.  I really hope they find a solution, and soon!  I'm still really curious about exactly what the problem is.  This is just all so strange.