My Apologies for the redundancy

#1

Hey y’all! I’m Mariah, & my bf Daniel, 38, was just diagnosed with stage 5 renal failure. He’s got type 1 diabetes & high blood pressure. & somewhere in the last 2 years is when his kidneys actually started failing. He owns & runs his own business. PKD runs in my family. My mammy (grandma) has it. 2 out of 3 of her kids have it. (My aunt & mom) 1 out of 2 of my aunts kids have it. & 1 out of 2 of my moms kids have it (my sister). My mammy has been doing dialysis for the last 10 years. She started at home at night. & then treatment moved to in center. She was on 2 transplant list. They opted to removing BOTH of her kidneys about 5 years ago, but unfortunately she’s had some illness’ that got her knocked off the transplant list & she’s never been able to get back on, so she’s been rocking the no kidneys thing, its working for her. But so anyways, I’ve got some background into CKD & dialysis & so on. But it’s almost as if it’s brand new territory that we, my boyfriend & I, are treading on now. We have so many questions. & have been told so much information we don’t know what to think or what’s accurate or not accurate & so if y’all wouldn’t mind sharing with us your experiences & knowledge & understanding, we’d be forever thankful.

  1. He’s thinking of doing CPD (the nocturnal one with the cycler? At home of course) what’s yalls opinion on that? Pros? Cons?
  2. Will he even be able to be on a transplant list being he’s diabetic?
  3. He wants to know what he can eat? We’re in that weird stage where we’re not on dialysis yet, but it’s in the future & his doctor said to keep his potassium low. He’s tired of eating salad & wants red meat.
  4. If he does go with CPD (idk if that’s the right letters, but the one in his sleep with the tubes & cycler) will we be able to sleep in the same bed? Or the same room for that matter?
  5. If we have to get rid of our dog because you can’t have pets on home dialysis because pets have germs because people pet them, what about babies? People hold babies. They’re pretty much the same.

That’s all I can think of for now… thank you guys again in advance!!

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#2

Hi Mariah,
One of the best ways your boyfriend can choose a treatment for kidney failure is to use a tool that considers his lifestyle and values. Medical Education Institute (MEI) that administers this message board and the full Home Dialysis Central website developed such a tool that you can find at https://mydialysischoice.org/. It sounds like he wants to do overnight peritoneal dialysis. You’ll see this referred to as continuous cycling peritoneal dialysis (CCPD) or automated peritoneal dialysis (APD). MEI has another website called Kidney School that has 16 different modules, including one on treatment options, one on nutrition that provides information specific to people with diabetes on peritoneal dialysis. There are also modules on sexuality and fertility, coping with kidney disease, etc. You can find this at https://www.kidneyschool.org/. He can either download the module or work through it online (no data saved) to get an “action plan” and a certificate of completion. The diet changes once he starts on dialysis. People with failing kidneys are often told to eat less protein to protect the kidney function they have. People on dialysis have to eat more protein and if he chooses PD, he’ll have to eat a lot of protein.

Although some nurses will discourage patients from having pets, pets give patients such joy that we’d never tell them that. In fact, many people who do hemodialysis or peritoneal dialysis at home have cats and dogs. When trained for home dialysis, he’ll be told to keep any pets out of the room when doing PD connections/disconnections and to make sure that any pets you have can’t chew dialysis lines. You can sleep in the same bed with him and you can have sex when he’s on dialysis as long as it’s comfortable for both of you, the lines are not crimped, and the PD catheter is secured to his body. When he’s in training, his nurse should tell him how to secure the catheter. If you go to the main Home Dialysis Central site at https://homedialysis.org/ you can find lots of information about home dialysis (all types), including supplies like PD belts (under Home Dialysis Basics).

People who have diabetes can get a transplant. People who want a transplant have an extensive medical and psychological evaluation to determine if they’re eligible. If he’s eligible and he has any potential donors, they would go through an extensive evaluation to see if they’re healthy enough to donate. Anyone who’s healthy enough can be a living donor. It doesn’t have to be a relative. With a living donor the surgery can be scheduled and the transplant can take place sooner than being on the national transplant list. In fact, some people have been transplanted before starting dialysis.

With your family history, have you been tested to see if you have PKD? If not, I’d suggest you get tested. There is a new drug that slows decline in kidney function in people with PKD. You can read about that here - https://pkdcure.org/tolvaptan/.

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#3

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.

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#4

Mariah, Both earlier answers are excellent. As they told you, if he does nighttime peritoneal dialysis,
he will have to increase protein IE meat. Dairy products, milk and chocolate are high in phosphorus which is not removed by peritoneal dialysis, so must be avoided. It will be easy for you to find lists of foods which are high in phosphorus. There are several months of recuperation from the surgery for insertion of the catheter during which some abdominal pain may occur as the fluid is running in and dwelling. Eventually, your body adjusts and there is no discomfort. We also have a dog, but she is non-shedding and we do not allow her in the room while he is connecting and disconnecting, but she sleeps on the floor all night, adding her soft snores to the sighing sound of the cycler. Hopefully, your bf will feel so much better after he begins dialysis, that it will just be part of life. We have been doing overnight peritoneal dialysis for one year. Best wishes to both of you.

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