Hi there. Seems like lots of the questions were answered by Beth from that perspective of social worker.
So here’s my perspective as a caregiver for my dad who’s 86. Once your bf is on the cycler, it’ll be fairly easy to live life as normal. But I don’t know that your bf is going to want to have sexual relations while hooked up to the machine. It’s attached to a catheter that comes out of a hole in his stomach about an inch or so to the right or the left of his belly button. While that line can be taped aside, and indeed that’s recommended (it’s called a tug line), that may not be an easy thing to not think about during sex and still have it feel fun and in the moment. He may want to even wear a shirt, even a tank top during sex even not hooked up to prevent it getting accidentally tugged in the belt holder.
I’d say he’d probably be more comfortable with not being hooked to the cycler for this. It’s something you’ll both have to determine once you get a visual of how it all fits together.
Enough about that. If your clinic trains like ours did, you learn the manual way first, so if the power goes out he can always have his treatment. The manual form of PD is not easy. All depending on his prescription, he will have anywhere from 3-6 exchanges a day…these don’t take up too much of your time in total, if everything runs smoothly. But if he has drain issues, each exchange can take up to an hour or more to complete. The “average” they love to quote is 20 min drain, 5 sec flush, 10 min fill, 4-6 dwell. But each person is different, so please don’t think foolishly as I did, that all will be “Mary Sunshine”. An exchange is defined as the whole process from drain to dwell, in order: drain, flush, fill, dwell. Dwell times vary based on prescription, once you’re on the cycler or as directed by his physician. Also, how to keep the solution heated isn’t the most advanced tech–a heating pad and a cooler box. You have to monitor this to make sure the solution isn’t too hot going in.
Of course, none of these terms mean much to you until you’re doing the training. But I believe forewarned is forearmed.
As far as diet, everyone is going to tell you protein protein protein once he’s on PD, but until then, yes, it can be risky to protein load prior to that. Red meat will be amazing for him once he’s cleared to have it regularly (my dad was salivating for it). I’d watch for potassium overload too, again they’re going to want certain ranges once he’s on vs currently. Salads contain a lot of potassium, so that might not be the best constant choice for veggies for him? Cooking down the potassium in the vegetables works better than fresh, unfortunately, but it’s not like he can never eat fresh vegetables, just moderately. Watch for phosphates! They are everywhere in protein based foods! Phosphates are bad, m-kay? There’s a pill he can take if his phosphorus gets too high, but he’ll want to avoid taking anything he doesn’t have to. The other thing with the diet, is because he is diabetic, the risk is higher for blood sugar increase. The solution they use is dextrose based, which means he truly cannot overload on sugar in his diet. If he absorbs any of that fluid through his peritoneal lining back into his body, that’s no good. Fluid overload is also a major concern too. If you are going to be helping him as a care partner, you must understand this quite clearly. You become his nurse, his dietitian, his counselor, his motivator, his enforcer. This may seem like no big deal, but this way, he sorta becomes your part time child. He’s young, but that doesn’t mean he’ll take care of himself, because let’s face it, most men aren’t very good at that anyway. As he runs his own business, that’ll make him less inclined to notice things in himself.
The manual PD is awful. If he doesn’t have to do it for more than training purposes, he’ll be lucky. My dad had to do it for 4 weeks. He had to walk around with fluid in his peritoneal cavity all day and all night. It fills in all the extra spaces in the abdominal space so it presses on your bladder and intestines and diaphragm and stomach. It made him have practically no appetite for anything more than a portion of a short stack of playing cards. Lots of liquid nutrition for those days. Some people can take more fluid than others for their fill, so he must be honest with how much feels comfortable for him. But the lack of appetite seems pretty consistent with others we’ve asked too.
We have a dog, btw, but he is well trained and stays out of my dad’s room and doesn’t chew cords. The hair risk is low, but that’s the main thing with pets, in or out of the room. To vacuum in the room the treatment is done in is an obvious thing, but remember when washing clothes that the hair gets on clothes and stays on regardless of washing. So for his exit site, any hair that gets stuck there can contaminate it. That’s why it was recommended to always clean and cover my dad’s exit site every day, even after it’s healed on the outside, it’s technically an open site to the inside.Any hair that is on his clothes can get on the site.
The very last thing I can think of is the sheer amount of medical waste. Most of it is not recyclable so that stinks. Your facility should know what your state/local laws are for disposing of the waste from home. Also, make sure your nurse doesn’t over-order initial home supplies, as mine did and then my dad’s prescription changed and I’ve got soooo much surplus I can’t use. It’s a medical prescription so I can’t donate to human hospitals and I can’t donate to veterinary hospitals because the minerals contained in the solution are too high to use with animals. I’m probably going to end up just dumping liters of solution down the drain. It’s awful.
Read up on all you can, if you think that will help, but only living it will tell you how it truly is.
If I can answer anything, lemme know. We’ve been doing this since February this year, so it’s fresh.