I set it up entirely by myself and asked them to check it before we stuck him. (Cheated and used my handy flip chart I made) They got the needles in smooth an easy. The run was uneventful, although we ran at a very low BFR because his Venous pressure was wonky. (BFR = Blood Flow Rate, or the speed at which the blood exits and enters the body) No issues today.
Day 9 - Today (I think I've decided to name our machine 'Vlad'.)
Today was another full run. I'm still not sticking his needles, although I'd really like to. Super Needle Nurse did them today, and in the early part of the run, we got some Arterial Pressure issues. His veins have done a dive farther down since his infiltration (bastards!) so the needle just didn't lodge right. She re-stuck him further down, and all went beautifully. I sat and went over the books some more, and kept his logs (I chart his vitals and such every half hour). Currently, the nurse isn't having to 'train' us anymore. It's more about repetition and hands on work. It's starting to feel more comfortable for me, and I think for him as well. Personally, I'm getting a better grasp on what the numbers mean, the lights, and the like. Which is important. I'll repeat, I need to know WHY things happen in order to feel competent to keep things running right, and to handle problems when they arise.
His buttonholes are slow going, because we've had so many fits and starts with his arm, so we'll be there through next week, even though we could likely be ready to be home before then. I'm surprisingly comfortable and not hurried about this. It's REALLY nice to be doing it at Wellbound, mostly by myself, but with support if I so much as raise my voice. :) In fact, while taking him off, the nurse and I forgot to hit the 'Mute' button on a meaningless alarm, and two of the other nurses poked their heads in to make sure all was well. That's pretty awesome.
I asked for, and was given, a fake 'arm' to fuss around poking needles into today. I know we are trying to make buttonholes, but I'm thinking the ability to stick him with sharps is gonna be a handy one if his access acts screwy at home. So today, I practiced sticking needles into a fake arm filled with red colored water. :) I only infiltrated a bajillion times. I asked to practice on my own arm, but got veto-ed. I'll just keep asking. :) I'd love for my fingers to know the feel of 'You've hit your target, STOP'. Seems a valuable bit of info.
They asked us today if a patient who is considering Home Hemo could come in while we were running, see our set up, and talk to us. It was almost amusing, because I feel SO damn new, and lost sometimes. But really, I think what they wanted was for them to see the machine in action, and for both of them to be able to ask questions of people in their shoes. Caregiver and patient alike. They sat with us for about fifteen minutes, and we talked about the differences between this and PD (their current modality) and just generally tried to bolster their courage. Apparently, we did okay. :) They asked us if we'd be interested in being part of their mentoring program. Which I would actually LOVE. I am a huge fan of home dialysis, and I'll happily share that with anyone who asks.
So, the nuts and bolts today. I managed to safely get his BFR (Blood Flow Rate, remember?) to 380. When we run during the day when we come home for awhile, we'll want that more like 450. (We will run during the day at home for a few weeksish until I feel pretty comfortable. Waking to an alarm at 2am and feeling like you haven't a clue what's happening would not be fun.) When we switch to nocturnal, we'll drop the BFR WAYYYYYYY down, and run long, slow dialysis. The benefit of this is several fold:
- It's easier on his fistula. Think about a hose, and how much longer the hose lasts if you don't run fire engine strength through it.
- It's easier on his heart, and we know hearts last longer when you are kind to them.
- It often will pull Phosphorous from the system, which shorter, quicker dialysis, NOR Peritoneal Dialysis can do.
- Generally, the patients fluid restrictions can be lifted some, which makes for a happier patient.
- Plus, doing it at night while you sleep, you lose NO moments in your life. You are free to do as you please.
If you are a dialysis patient who would like to do dialysis at home, under the care of a fantastic organization, speak to your Neph about associating with a 'Wellbound'. They aren't very widespread yet. I'm told that the way an area gets Wellbound to come in is to have enough interest from the Nephrologists in the area. Talk to yours. You could simply NOT ask for better, more EMPOWERING care. We are never, ever herded anywhere like cattle, we are always shown respect, and more importantly, they hold your hand until you are ready for them to take the training wheels off. Even then, they are right there, 24 hours a day, just in case ya skin your knee. It's lovely that instead of visiting them once a month and our Neph once a month, etc, we go there once a month to what we call 'Clinic Day' and our Neph meets us there. So, our entire kidney team discusses what's going on. The dietician, the social worker, the nurse who has our case, the Neph, and US. We are never rushed (in fact, it's usually US who is in a bigger hurry) and our Neph spends all the time WE need, which is a beautiful thing. :)
Okay. That's the end of my advertisement.
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