Hi everyone, I hope you had a good day despite it being a dialysis day. I just finished a call with my nephrologist as Im withdrawing from hemodialysis. Its been hell pure hell, i almost died from a fungal infection in my brain 1 week before a scheduled live donor. basically since i had to restart hemo within a month i was having issues. July 4, 2014 i was done dialysis opn the way to elevator a searing headache was disabling went back to the unit sat in a chair and passed out. I had had a small stroke, then last month same thing, yesterday an searing headache came back with vengeance i must have passed out as i woke up on the couch competently disorientated, could barely speak. i had another small stroke and the emerg doc said a major stroke is heading my way. My labs suck mostly creatine despite doing home hemo, i cant finish sessions and end up violently ill. Im my case dialysis is becoming redundant to me. Nothing is working. this is NOT because of fluid, diet etc, Its literally killing me. Now, my nephrologist is concerned i will die at home as my condition is that bad. she suggested in centre until its time to go into hospice i said no as i have been to the unit and just run into issues with the god damn nurses so in that instance how is that a respite for my husband as he has had to stay to make sure they dont make me sicker. I said to her it doesnt matter i could die incenter or at home. I cant take it anymore, i sorry we have NO quality of life as my days off are usually in emerg or at home sleeping and sick to my stomach. i want to thank you for this group. If you ever experience no quality of life and feel dialysis is so much to bear you do have rights. Ive fought this for 20 years now and enough is enough. Im 44 but i have known people who have been younger than me withdrawing from dialysis. A
Posted on: Wed, 08 Oct 2014 00:58:54 +0000