I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: lynnrlpd1 on March 01, 2013, 07:09:25 AM
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I've only been doing PD four weeks but I just don't know if I can ever get use to this machine. I'm still up at night with it becasue sometimes I get the drain pain - not as bad, just a few minor pains but it will wake me up and I'm using the tidal but I just can't get use to all that noise also.
I wake up three out of four morning and feel totally wiped out, it just feels like it is taking everything off of me. My protein is okay though. This makes me want to do the manuals because I don't feel wiped out when I do the manuals. So I go back and forth but I am thinking of just doing the manuals.
I just hate being tied down to the machine at night. I have to go to bed at a certain time in order to be up to get my day going. Plus I need to get up about three times during the night to urinate which needless to say is a lot of trouble getting on and off the machine.
Do I just need more time or should I just do the manuals.
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lynnrlpd1, You will get use to it, give it time. To quieten the noise we put a thick towel under neath it. Have a bowl at the side of your bed when you need to go in the night because the more you get off the machine by disconnecting the more likely you are to get infections.Have a word with your nurse about the drain pain, don't forget your tube is still new. Are you having good drains? it could be that it is leaving you a bit dehydrated, take a drink to bed. Hope things are looking up.
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I am lucky enough to be able to set my machine in a different room than the bedroom. Because of the layout of my home I can get to my bedroom, living room (machine is there) the bathroom, the kitchen and my computer room. Plus I can even get outside to let the dog out if he needs to go out.
I prefer the machine as I am usually home early, except for evenings I have church activities. My total time on the cycler is just over 8 hours. I felt so trapped and stressed when I did manuals. Especially when I had doctor's appointment 60+ miles away from my home.
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i agree with billybags and JLM about not disconnecting if at all possible. Can you find a position for your cycler that will let you get to the bathroom and stay connected? My 20 foot line lets me get to my easy chair in the loft, my bed in the bedroom and the commode when necessary. All without having to disconnect. It's just better for you in the long run. As for the drain pain, that may take a bit of time to resolve itself, but it should get better. I find when I have pain, I can pinch the line and then wiggle around a bit to break the suction it has created (that's what is causing the pain).
Hang in there, it should get better pretty soon.
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One day last week my furnace went out (not on a date) and the temp was in the mid 30s. So I put a 20 foot extension cord (heavy duty) on it and wheeled to the dining room. I closed the doors to my bedroom and living room and turn on an electric heater we have that looks like burning logs in the fireplace. I then turned on the gas oven and kicked back in a recliner. I did turn off the oven before I went to sleep. Just to be on the safe side. I could still get to the bathroom and kitchen by setting the cycler within reach of each room.
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I empathize with your drain pain! I try to start my first cycle while watching TV or working at my computer so that I get at least one drain out of the way before I lay down. My tube does not drain completely when laying down and I will build up residual from previous cycles and UF that is not drawn off. I could set the unit more sensitive, but it would be going off all night. I finally developed a system of setting my phone alarm for each cycle and getting up for 10 minutes or so to let it drain completely. It brings back memories of when we had newborn babies in the house! I tend to catch up on sleep on the weekends!
When it is pulling like a son of a gun I stand up and shift my weight from foot to foot. It also helps to move away from the unit as far as my tubing will go to decrease the pull. I've tried pinching the tubing too but it doesn't seem to help and sets off the alarm. My nephrologist had me go back and visit the surgeon to talk about it. He said that as long as the catheter is draining and filling, not clogged, that he would not recommend doing anything about it. He said he could go in with a laparoscope and move the tip of the catheter but nothing would prevent it from migrating back. I am still much happier on PD than Hemo. I put up with the issues and play the game trying to get it to improve. My nephrologist calls it the "art" of PD. I found that manual drain actually pulls harder on my gut, at least when they were training me! Maybe I have to raise the drain bag off the floor a foot or so to decrease the pull with manual!
There are longer tube cassettes that may allow you to reach the bathroom at night. Your PD nurse should be able to order those for you.
Another option: If you are in a dwell mode, you can turn the machine off, move the cart to the bathroom and as long as you get back to your bed and plug it back in before the dwell is scheduled to be finished, you can just plug the unit back in and stop the alarm when it says power restored and start and it continues from where it left off. I do this when I hook up in the bedroom with fans off, doors closed, start the first fill and wait till it gets to first dwell, shut down, move the cart to the living room where my big screen TV is, and plug back in again. My PD nurse and I tested this out and I'm doing it with her approval. I have not had any issues with my machine or errors doing it. My unit is from Baxter.