Hi Julie, Although I have no scientific evidence to suppor this, I think that dialysis without kidneys is much harder than dialysis with kdineys. I had one session beofre my kidneys were removed. I did get sick (after all it was my first time) but I felt GREAT afterward. Then I had the kidneys removed and I was on dialysis for 10 weeks beofre my transplant. I didn't have the trouble you are having, but I got headaches and always needed a nap after my sessions. I felt pretty good on my "off" days but the 3 days a week I had dialysis I always felt tired and foggy. I also had crazy high blood pressure without kidneys. I was told that it takes most people 60 to 90 days to adjust to dialysis. You are just at that point about now. I hope that you soon begin to feel better.

Julie, so sorry you are still suffering. I was not on hemodialysis, but PD, so I am sure that was different, and has it's own issues. But for me, it really took months for me to get some energy back, and to get the toxins out. I had gone so long building it up, and waited probably a bit too long. The Dialysis center told me to expect to take some time getting detoxed, and not to push myself.

Are all of your other numbers doing ok on your labs? Are you getting procrit shots to build up your blood?

You really have been through a LOT..... so don't be hard on yourself, this is more than the average person can handle..... so be gentle. Keep us posted!

Thanks Lindsey and Heather for your responses. I know from communicating with you before that your issues with dilayis were different to mine, and in your case Lindsey your wellbeing was much improved. This is really the reason I have posted because I have not really spoken to anyone who seems to be having such a bad time although most patients I speak to at the unit remember feeling unwell for first few weeks. I am encouraged to think that once I start more gentle sessions on home dialysis in a few weeks my symptoms may improve or become obsolete but on the other hand am worrying that this may go on for a very long time. It really does affect my quality of life and in some respects my relationship with my husband as he just sees me as 'always sick'. I was really positive before dialysis and the nurses always comment on how upbeat I am even though they know what I go through afterwards so I'm pretty sure it is nothing to do with how I am approaching this. Also before dialysis I really feel like I need it- espescially to get fluid off (as I do not pass any). I think you may be right Lindsey saying that having no kidneys may make symptoms worse as I do feel a lot of pain around my scar and some of the bulging visible cysts from my liver. I am also leaking fluid, which has been happening since I left hospital in November. It appears that I may have a pool of unprocessed fluid that has accumalated and is finding another way out of my body.- just waiting for the results of scan to confirm this then will need minor operation to drain. Although I am more than happy to lose extra fluid this is really getting me down as the fluid has an offensive smell and I need to shower 5-6 times a day and wear panty liners, and I can still smell the strong odour (like sour milk). So even if I feel well (which is rare) I still feel as if can't go out because of this emabarrassment. I also need some liver cysts draining and again am just waiting for the results of scan to confirm this. Hopefully this should help some of my pain. The good news is that the oxycodone that I take every morning and evenning and then extra for the painafer dialysis makes me quite relaxed, whereas previously I have not been able to concentrate to watch telly or read. Now I feel settled enough to do that now. The bad thing is that I am still suffering psychological issues (flahsbacks to the feelings I had in hospital when I thought the nurses were trying to kill me- I was very fearful for my life and did not think I would make it through the night- felt very close to death). I now know that this wasn't real but unfortuantely I cannot get to sleep with the light off or the feelings of imminent death return and come into my mindcausing panic attacks and I end up crying myself to sleep. To avoid this I have been keeping the light on and the telly on until I get to the point where my sleeping tablets have kicked in and I'm ready to drop off. Sometimes this is really late like 3.00 a.m and my husband is getting 'pissed off' with me. So now I sleep on the couch, so he can get a decent night's sleep(which isn't good for our relationship) but I have no choice as I need to keep telly and light on to avoid the flashbacks.. I'm sorry for the long winded post but I feel quite isolated at the moment and have no-one to speak to about this. I was desperate for my life to get better but yet all these negative little issues keep cropping up and I feel like they are completely out of my control. The psychologist is not available to see me for a few weeks as she has a full book so I would like to hear from anyone who has experienced any of these issues and how they managed to cope or overcome them - or even worse is still suffering. P.s recently all my posts have probably been reading as negative but only want people to know that things may not go as smoothly as they expect just so that they get a fully rounded picture- I'm not trying to put people off- so hope I'm not offending anyone. Thanks for reading Juliex