In June I began my PD training. This would mean I would now do dialysis on my own at home. I began the manual exchange method. For anybody who can do this type of PD, my hats go off to you. For me the experience was not good. It is a simple process but you have to do it every 3 to 4 hours for 4 times a day. So, basically your whole life revolves around dialysis. I would get up at 5am drain out (I always have 2 pounds of fluid in my stomach dializing) and then refill my peritoneal cavity with another 2 pounds of dialysis solution. I would "dwell", that is what it is called when you are dializing, for 3- 4 hours and then drain again and so on and so on. Not much of a life. Plus, I had to be in a room, with a mask on, with the door shut and this totally freaked Madeline out. She was scared of the mask so she refused to wear one, which meant she was not allowed to be in the room with me while I was doing the "exchanges". I tried to get her to wear a mask but noway was that happening. Also these exchanges took at least an hour for me. My body was not responding very well to this treatment because for some people they can do an exchange in 30 minutes. So picture this, I am in a bedroom with a door shut for at least an hour and cannot get up meanwhile, a 3 year old is running through the house bouncing off the walls. Or she would stand at the door and cry for me. This was torture for us both! I could not do this type of dialysis. But I would have one more option. The night cycler.
With the night cycler, I hook myself up to a machine at bedtime and dialyzes while I am asleep for 8 hours every night. This made more sense for me to do it this way. Chris could help me set it up and be at home while I was doing it. He was there if something went wrong with my machine or Madeline needed something. I thought to myself, "this will work so much better and I will have my days free!" Unfortunately there would be a fight with the dialysis unit to get the machine.
The useless social worker felt like I was being "lazy" and just didn't want to take the time to do the manual exchanges. She totally missed the point about having a three year old to take care of! She then, proceeded to tell me, Madeline would need "play therapy" to sort out her "issues" with having a sick mommy. Okay, that was enough! First of all, I may have been a sick mommy but I was doing the best I could at the time. And as a pediatric occupational therapist, no social worker who doesn't even know my child, was going to tell me, my child needed therapy. If she needed it, I would have been aware of that and gotten her some help. But she was fine. This social worker really stepped over her boundaries that day, pissed me off in the process and I reported her to the clinic director. The social worker later had to apologize for her ridiculous comments and she had to order my machine!
Linda Burke left a comment for Jeff Wilhelm
5 months ago