Not a pleasant experience. In the beginning of hemodialysis (I will refer to it as hemo) I had to be there at 6am 3 times a week. So after being up all night puking and such, I got to wake up at the crack of dawn to have my body drained of all of my toxic blood! The very beginning of hemo is a blur. I would sit in an uncomfortable, pink plastic chair for 3 hours wishing I was dead. Much of the three hours I cried and cried and cried. Some of the nurses would try to talk to me but I wasn't ready to hear anything. I hated everything. I hated the sound of the machines, the smell of the clinic, getting bounced around from nurse to nurse because for the most part, they were use to little old men and women, not pissed off and depressed 28 year olds. None of them had ever heard of HUS so this was not comforting.
I rarely saw a doctor in the beginning. He says it was because I was always asleep when he made his rounds but still, at that time, I wasn't ready to talk. He already had a bad relationship with my family. I was too sick too notice or care at this point. However, I didn't like the dietitian we had at the time. She knew as much about dialysis and renal diets as a box of rocks. There were two social workers. One was very sweet and uplifting and the other should go back to the mental health setting where she belongs. The nurses varied. There were and are some really good nurses at the dialysis unit. But there are equally some bad, incompetent and lazy ones. I would be bounced around the nurses until one could finally "deal" with me. My main hemo nurse was awesome! I felt very blessed to have been assigned to her. She was one of the few in that clinic I could tell really cared about the patients. She would be an important factor in getting me through this horrible hemo process.
Once I got assigned to my main nurse, my schedule changed to 3pm in the afternoon. I would still dialyze for 3 hours 3 times a week but everyday I was getting stronger. I was so blessed during hemo days because I ALWAYS had a family member or friend take me to dialysis, sit with me through 3 hours of treatment and then take me home. Hemo days actually became tolerable. My friends took me to lunch before, taught me things, read to me, rubbed my feet, talked with me, just anything to make the time go by. I am going to attempt to list everyone who took me to dialysis. My mom, Chris, Susie, Matt, Daddy, Steven, Cynthia, Cheryl, Brenda, Erin, Martha, Tami, Meghan, Laura, Lori, Brooke, Amy, Beth and God bless you and forgive me if I left anyone out. They were my entourage. I would have NEVER made it through hemo without each of these wonderful people. Behind the scenes were neighbors like Shannon, Lois, Teresa and Mrinda helping me, Chris and my mom with Madeline. It seriously took a village when it came to hemo!
Linda Burke left a comment for Jeff Wilhelm
4 months ago