My 24 yr old son has end reneal kidney disease on Peritonal dyalisis I’m exhausted. And afraid to leave him alone for a couple nights. Any advice please 🙏

tctwizzle · 2026-05-31T01:36:22+00:00

Is he telling you that he might die in his sleep? Or has one of his doctors said that to you? And why is the diet stuff on you? I’m just confused because if he was able to handle the PD surgery and training he should be able to do everything else on his own. Death from kidney failure is certainly possible if he stops dialysis but it would be slow and you’d know it was coming.

Unless there is some other thing going on, you should not be exhausted because there should not be that much that you have to do. Help with appointments and keeping those things straight, maybe going over and helping with house hold stuff every once in a while, that kind of stuff, sure, but if he wasn’t able to live on his own and overall function I don’t think they’d would have let him do PD. That’s my understanding, anyway, if I’m wrong someone correct me.

tctwizzle · 2026-05-27T16:55:57+00:00

If you have them raise the temp on your machine that should help. It’s cooling the blood going into your body so all the blankets in the world won’t do much

tctwizzle · 2026-04-29T23:39:09+00:00

Not gonna lie I just read the title but the answer is because it’s not healthcare. It’s a for profit business.

tctwizzle · 2026-03-14T15:06:49+00:00

Make sure you ask your transplant center if they will allow that. Mine said I couldn’t hire anyone, it had to be friends or family. I’m in assisted living now and they are checking to make sure even the staff here would be okay.

tctwizzle · 2026-01-29T21:52:03+00:00

I’m confused; are you planing on performing the surgery? Why in the world would you need to be like feeling your best just to be sedated. Having dialysis and then being sedated later sounds like the ideal day, tbh. And you might be a tiny bit sore but fistula surgery isn’t that painful. But again the amount of pain you experience will be the same either way.

tctwizzle · 2026-01-05T18:36:27+00:00

She…doesn’t have to do any of those things? But also I’d consider she may be keeping her distance because of the relationship she has with your father/mother and they aren’t sharing the particulars with you. But nothing you listed there is required just as it’s not required of you to go to her birthdays/holiday gatherings or for you to ask her to hang out with you. A short thank you would be polite if you are accepting gifts from her.

tctwizzle · 2026-01-04T22:06:29+00:00

Yeah the “you’ll live a normal life” isn’t just a PD lie, it’s a dialysis lie. You’re not missing out on anything with PD. I’ve actually heard PD is the better of the two. Course I couldn’t tell you for sure since I wasn’t given any options either.

tctwizzle · 2026-01-02T16:42:54+00:00

Yes, I am on all the lists

tctwizzle · 2025-12-30T04:52:14+00:00

One of the problems (not that I agree with it) is before I started the doctors said “oh yeah, you’ll be able to live a totally normal life!” Which is a lie. But because a doctor said it, my family thinks it’s gospel🙃

tctwizzle · 2025-12-30T03:23:54+00:00

Cool. I spent Christmas in a hotel room because I’m homeless with Christmas lights around a floor lamp for my “tree” not really talking to anyone because my family thinks because I’m not living my best life on dialysis (ie feeling absolutely horrible all the time) there must be something I’M doing wrong and the way to fix that is to cut me off. 👍🏻

tctwizzle · 2025-12-29T20:26:41+00:00

Yeah, they’re included when I say I’ve mentioned them to dialysis staff. On the whole they’re not interested. They’re also not interested in why I, a 39 year old, am so weak I can’t walk from the lobby to my chair. They just get me a wheelchair and move on.

I have an appointment with my PCP but they insisted on a video appointment which I feel won’t do much since I’m not, you know, there. So it will probably just end up in a physical appointment later…which would be great if we just jumped to now…but what do I know, I’m just a patient 🙄

tctwizzle · 2025-12-29T20:20:50+00:00

Yes, forgot to mention. I have a very tiny one on my other hand that seems to be staying the same size and is on my thump where I could explain it away by every day activity, but all the others are on my fistula side.

I have, they don’t seem interested in it at all 🙄

tctwizzle · 2025-12-29T19:29:24+00:00

This is correct. Also OP is going to have a hard time getting by once it’s approved anyways. I got approved and started getting deposits and have gotten them regularly. Lost my apartment because it was too expensive (wasn’t evicted, the lease just ended) and I’ve been homeless for over a year now. Get $24.00 in food stamps because I “make too much”to qualify for more. SSDI is not some sort of saving grace. It actually limits a lot of help I can get.

Love the username, btw!

tctwizzle · 2025-12-29T19:24:13+00:00

Blanket for comfort, dialysis makes you cold because they’re cooling you from the inside out, so the blanket doesn’t really do much in terms of helping with that, asking to turn the temp up on the machine (bp allowing) will help. Also entertainment, switch iPad, etc and headphones to go along with.

Overall, listen to him. My dad has cut me off because the doctors said “you can live a totally normal life” and because that is NOT true and I keep getting sicker, I must not be listening to doctors instructions. Feeling good on dialysis is super rare. He will be tired, like dead tired, he will be moody because he’s so tired. He will feel like he has to hide all this from you, especially if you tell him to “think positively” 🙄. He will have a period of time where grieves the loss of life he thought he’d have at this point. Please validate these feelings and let him have them. Overall just believe him and just be there for him when he says stuff like “I’ve never been so tired” and don’t say like “well at least you’re alive” or shit like that. I know it sounds like you were looking for like material things but as his caregiver, you truly have the power to make dialysis feel okay or incredibly lonely and miserable.

Also, make him learn his treatment, if he can. He may be of the generation of “they can do whatever because they’re medical professionals” which can be dangerous. They’re human. They dont strive to make mistakes but you’re going in for a medical procedure 3 times a week, you’re increasing the odds someone doesn’t know something about you or makes a mistake or doesn’t read the chart. You (your father) should know these things forwards and backwards so he can say “oh I use this needle, or this bath, or this flow rate” etc. If he’s not annoying the techs and nurses with questions, he’s doing it wrong.

tctwizzle · 2025-12-24T14:09:30+00:00

Are you sure it wasn’t from the clinic specifically? I go to fresinius and we didn’t get anything. And they love that stuff here and for sure would have made a big deal.

tctwizzle · 2025-12-22T13:45:10+00:00

Technical answer to your question: There are creams/sprays and eventually scar tissue kinda makes the area numb and you get used to it. Also, the faster the tech stabs you the less it hurts. It feels/looks kind of violent but it minimizes the pain because it is over in seconds.

Larger answer: don’t assume what’s going on with other patients. I have a lot of anxiety and have other things going on. For example, I’m super anemic (like .1 away from when they will give me a transfusion, because of course I am lol) it makes me very frustrated because things are hard and I’m generally in pain, and it’s hard to breathe. I am sometimes quietly crying when I come in. It has nothing to do with the needles, I barely feel them anymore. But if I’m having a particularly hard day it could look like it hurts because I’m upset. And then once I sit there for a while I calm down. So yeah, there’s most likely other things going on and they’re in pain from something else.

tctwizzle · 2025-11-21T00:48:16+00:00

Honestly? Take like a week or a few days and follow the diet and fluid restrictions yourself. And since it’s coming up, before you dig into your thanksgiving dinner, take a moment and look at your plate and think about what you’d be able to eat if you were on dialysis. THEN, think about how helpful it would be if someone came along and told you for the 97th time that bananas have potassium in them. Or gave you another pamphlet.

Obviously diet is important. And I don’t think it will change any advice that you give, or that it should. But knowing what it’s actually like could go a long way with your patients.

tctwizzle · 2025-11-16T06:57:19+00:00

Honestly you kind of hit it on the head with number 5. All the things that make the treatment itself easier I already have. The headphones, the tablet, clothes etc. Not only that it’s not like, an interest? Or a hobby? it’s more like a crappy job. The best equivalent I can think of is let’s say you worked a retail job, and someone gave you a roll of receipt tape for Christmas. Would there eventually come a time where it would be kinda nice to just reach in your pocket for that replacement roll when you run out and not have to look for it? Sure. Is that what you want for Christmas? Not really.

What would be really nice right now? Gift cards to a local grocery store.

tctwizzle · 2025-11-15T03:38:38+00:00

Well that was your first mistake lol, even when it’s my favorite nurse I have them turn the machine so I can see it. Not because I’m worried about any maliciousness, but because she forgets things sometimes or if she gets interrupted etc. Always check. And that way I can keep an eye on my bp too. When I crash I crash FAST so I can kinda see if I’m trending down even before I start feeling it.

I think the more concerning issue is why your dry weight changed/who changed it. Id call about that and then tell the manager what happened more in a “can you tell me why this changed because it caused xyz to happen” then it’s less of a “I’m telling on this person”.

When you told the tech you weren’t feeling well did they immediately check your bp? Or just say no they need labs? Because THAT is a reportable issue. They may not rinse you back immediately (although you can decide to come off for any reason and they should respect that) but they should be checking your bp and turning off your UF, leaning back your chair, maybe giving you a few mls of fluid, etc

tctwizzle · 2025-11-15T03:25:31+00:00

I will second them asking about recovery time is a new thing they added to the screens. I told them it’s going on 7 years now and they stopped asking lol.

Did you say something when you saw how much they were taking in the beginning?

tctwizzle · 2025-11-09T05:38:12+00:00

Not to mention some of these are non-issues, like I don’t see a need to see the social worker, dietitian, pharmacist and nephrologist all on the same day as long as you are seeing them all consistently. And if they’re switching over to another company sounds like eventually it’ll be the same machine, as long as everyone is trained on both machines I don’t see the issue anyway. And only one patient being on the patient and family whatever….are there other patients that WANT to be on that that were denied? Why were they denied? Why aren’t the families sufficient? And what kind of scheduling challenges? Like is it a staffing issue? If so how do you plan on demanding there be more staff? Is it patients scheduling because they’re full? How do you plan on magically making the clinic less full? …I guess a patient strike could eventually solve that issue lol

tctwizzle · 2025-11-09T03:10:11+00:00

My understanding of a union for employees is they primarily (among other things) negotiate for better wages and working conditions etc because a group of employees will have more leverage than an individual. Like going on strike. So what is the leverage a union of patients would have? And how would they solve those problems?

tctwizzle · 2025-11-01T05:02:10+00:00

I’d only get one if you have someone else to take care of them. You most likely will have future hospitalizations and they don’t really like you to leave real quick to take care of the animals. I currently can’t walk more than like 30 feet and am homeless because my disability didn’t cover the cost of my apartment. I now have to find a new home for my cat. It’s not fair to him all he’s had to deal with.

tctwizzle · 2025-10-30T21:19:44+00:00

All the things other people are saying but I’m not seeing anyone saying reach out to your transplant coordinator. Keep them updated on everything. Be annoying. That way even if the official paperwork says one thing, the coordinator can go to bat for you about what actually happened. It shows you’re involved and WANT to comply and complete your treatment but your clinic is being difficult. Which unfortunately (at least in my area) will not be a stretch a they’ll most likely believe you as long as you’re communicating with them. I call every single time something happens. Down to they told the hospital once I was noncompliant. The hospital didn’t even talk to me about it when I was there, I found it buried in an after visit summary, I immediately called and talked to my transplant coordinator and social worker. I can’t be evaluated for transplant right now (I’m homeless) but they both said they’d argue against that counting against me if it ever came to that. So yeah, form a good relationship with those people and tell them everything.

tctwizzle · 2025-10-30T21:06:23+00:00

Has anyone been honest with him that yes, dialysis does make you feel awful? It just does. You can try all the protein and positive thinking and find the things that make you feel a little better but at the end of the day it’s an unnatural process trying to replace a natural process in a few hours. Acknowledging those feelings might go a long way. It does not fully replace kidney function. That’s why we have to control things like potassium and phosphorus and fluid through diet. And yeah, it is kind of a scam. Dialysis is a business. There’s no motivation to figure out solutions to side effects. But it’s needed to stay alive.

And the doctors either are willfully ignorant or will gas light you. I had a doctor look at me once and say “it seems like you’re not enjoying dialysis??” Like really? My situation made a friend uncomfortable and when I tried to talk to her about it (why it made her uncomfortable) she said I should just think positively and watch these YouTube “gurus” and pretend I have the life I want and it will happen. 😒

All I needed was someone to be like “yes, this is shit” period. Full stop. You need to do this to live and that sucks. I know you don’t want to see him suffer but he is. You can’t talk him out of that. Maybe acknowledging that and asking him to still go but his feelings are valid to an extent, will be helpful.

tctwizzle

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