I'm bad.
I started this blog to not look like I was fishing for attention, or sympathy or whatever on Facebook. But I haven't written anything on here in a really long time. I will do better...
In July, I had surgery to place my dialysis port. It's in my abdomen a few inches away from my belly button. It doesn't just go straight in though. They "snaked" it through my skin/muscle layer so it goes up and back down like an upside-down U. THEN it goes into my abdominal cavaty (peritoneum). The cord that hangs out of me is about 18 inches long and it has a special ending that attaches to the bags of fluid (dialysate) or attaches to my cycler machine. There are 2 ways that I can do dialysis: during the day- called "Continuous Ambulatory Peritoneal Dialysis or CAPD. The second way is just called nighttime dialysis and it uses a machine to push and pull fluid in and out of my belly. The second is what I do. Both kinds are done every single day. No days off!
My machine is called a cycler. So I attach my bags of dialysate to the cycler each night and hook up the tubing, which ultimately connects to me. Once I am connected, I can only go as far as the tubing will let me. So when Hayden has one of his frequent nighttime nosebleeds, Mark has to help him. No going potty... Can't reach! Haha I better go before hooking up! And I have to have a set bedtime now because the later I hook up to my cycler, the later it finishes in the morning. No stopping it early. It runs for 8 hours (plus the time it takes to hook and unhook). So if I need to get up early for getting the kids to school, for doctor appts., etc... I need to get to bed on time. So that puts the kibosh on any late night outings.
I love doing dialysis at night since it leaves my days free. But there is a problem with the cycler: it uses suction to remove the fluid from my abdomen. Not so bad at the beginning, but once my abdomen is mostly empty, the suction really hurts! It's like a straw suctioning the last few drops of drink from your glass... It feels sharp and pinchy and hurts like nothing I've ever felt before. It all depends on where the port is laying on the inside of me. Because of the fluid I put in there, plus my bowels always moving around, the port floats around. I never know where it will be located at the end of my drain cycle. Sometimes it hurts to high Heaven. Sometimes only a little or not at all.
Right now, my dialysis prescription calls for 5 cycles of 1500ml of fluid in and out of me all night for a total duration of 8 hours. So each "dwell" time is a little over an hour. The fluid has to stay in me to work on drawing out the toxins from my body. Me being on the small body side, a liter and a half of fluid in my belly looks and feels like I am 8 months pregnant. It is so uncomfortable and stretches my belly so big! But thankfully right now, I am drained empty at the end of all the nightly cycles. So I get to be empty during the day. As my disease continues to progress, my prescription will continue to change and may include leaving some fluid in during the day. Some people also have to do manual exchanges of fluid during the day. I don't want that!
I have three different strengths of solution to choose from each night. I select them based on my blood pressure and some other factors. So my whole front room downstairs has become my stockroom. I have many many boxes of solution, and get shipments each month to replenish the solution and cycler supplies (tubing, masks, tape, gauze, clamps, caps for the end of my port, etc.) Nothing is re-used. I go through a lot of supplies every day and since they connect to the inside of me, everything must be sterile. This leaves me with a plethora of empty boxes! Right now, we are saving them for Hayden who likes to build forts out of them or stack them up and karate-chop them down! Ha!
Well the whole reason I started this post was to talk about the epidural injection I got in my back yesterday for my herniated disc. I am feeling really owie today.... I guess I'll save that post for two weeks from now when I get my second epidural injection. Sheesh! I am a mess.
Peace, love, and pain meds,
Jenny
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