Overall, my thoughts are this. IF you HAVE to be on dialysis, the PD nighttime cycler is THE way to go. You basically hook up to this machine and go to sleep and you get your dialysis for 8-10 hours every night. I have my whole day just like a normal person. I am blessed to have my husband. Of all of the angels in my corner he is my #1. He sets the machine up for me every night. Sure, I know how to do it, but he does it for me. I'm not going to argue with that. ( I really think it's because giving Madeline a bath is like giving a cat a bath.....so I do the bath thing while he hooks up the machine!) Either way he is my #1 angel and I believe some men would have walked away from this crisis early on, but not Chris. He is a fighter too!
Also, I only had to go to the dialysis unit once a month for labs. I will do anything to stay out of that place!
There are some down sides to PD but the good far out way the bad. For one, there are numerous alarms that can go off during the night if the machine doesn't like something. But that just becomes second nature and you quickly figure out what buttons to push to correct the problem. It is a very smart machine. My only real complaint is sometimes during my initial drain, I drain 0 MLs. I am suppose to drain out 1000 MLs initially but sometimes I just won't drain. Also, my first "fill" of the night which occurs after my first drain is a 5 pain on the scale of 0-10. I am really use to it now but it feels like really bad cramps or early labor pains. It only last for about 3 minutes but they do hurt like hell some nights.
Traveling on PD is not easy but possible. When we went to the Mayo clinic we drove. I was not willing to "check" my machine on a plane. I don't think it is fair I should have to "check" my machine. That machine is my kidney, my life line. Would you find it reasonable if an airline asked you to please check YOUR kidney? I don't think so. The machine is not that big either. About the size of an old school VCR. I will post a picture of it. Anyway, traveling requires lots of planning. Our supply company will ship all of my supplies and solutions to anywhere in the country so all we have to do is get there with me and the machine. That makes it easier. We just have to be really careful to make sure we order a correct amount of supplies for the duration of the trip. If I was still on hemo, arrangements would have to be made for me to get dialysis in whatever city we were visiting. I had to do this one time. I didn't like being in a clinic that I didn't know.
One minor down side is I cannot be submerged in water. So no baths only showers. That's no big deal. But I can't go swimming. That stinks. I really wanted to be the person to teach Madeline how to swim but at least I am alive to watch her learn!
But overall, PD has been and continues to be a blessing in my life. I consider my life normal now. If you saw me right now you would never know I had an 18 inch tube protruding out of my stomach. I try to wear clothes to disguise it. Mostly for vanity purposes!
Linda Burke left a comment for Jeff Wilhelm
2 months ago