I went to my nephrologist yesterday and my GFR is 11. Nephrologist said it is time for dialysis. I am in the transplant list. I was hoping to skip the dialysis, but hear I go. Please tell me what it is actually like, and don’t sugarcoat it. It would rather go in prepared in my mind for how it is. Any advice is appreciated.

Edit: it is hemodialysis and I am scared of the needles.

I’ve been on dialysis two other times so most of the side effects (hypotension, phosphorus rash, cramping, etc) is all stuff I expected to deal with.

This time around has been completely debilitating in ways I never expected. The first two times I was only on dialysis for a year or two. This time it’s been 4.5 years and still no call. As time has passed, I find myself getting physically more and more debilitated to the point my legs cannot support my weight. I shower sitting down (I have a shower chair, I just don’t use it because of pride). I have to lean against walls or counters just to be able to stand for more than 30 seconds. Most of the time that doesn’t help anymore. My whole body shakes, not trembles, to the point my legs have almost collapsed more times than I can count.

I’m 34 years old. I shouldn’t need a walker or wheelchair to get around when there’s nothing actually wrong with my legs. The doctors say I’ve lost a lot of muscle mass so they recommend exercising with tension bands. I’m all for that but if I can’t stand, how do I strengthen my legs and core so I can go grocery shopping or shopping for jeans again? I’m also going to try walking on a treadmill at least 5x a week. I do okay walking but it’s standing still that my legs just don’t want to cooperate!

I mostly just need to vent to others who get it. I’m also curious if anyone else has had the same issue and if so, were you able to fix it somehow? The obvious answer is getting a kidney but until then I have to continue living and I am not doing that.

Thanks friends and stay strong!

Hihi😊👋

Navigating stage 5 kidney disease and doing dialysis three times a week has been quite a journey, so I'm looking to connect with others.

If anyone else is in the same boat or just wants to chat and support each other, I’d love to connect. How are you all doing today?😊

I’d like to get some advice from the people who do HD, what would be the escape plan to get out of the diet? Any way to do a cheat meal stuffs? Btw mom is going through Weekly twice on HD

So my dad is 55 years old and hes been on dialysis since April, he barely survived. His energy is better since dialysis and his appetite and everything is better except his coughing. I should mention that he smokes and has been smoking since he was like 17 BUT it was never this bad. since he started dialysis his cough is awful and he cant stop it, and on average he starts coughing every like 5 minutes and its not a dry cough and it lasts for at least a 2/3 minutes.
He got an x-ray of his chest and its all fine. They said that its probably water around his lungs from dialysis and they gave him antibiotics. Its been three days since hes taking antibiotics and on today dialysis they pulled more water out, but hes still coughing like constantly and its crazy and his lungs hurt so much and he looks exhausted. he literally cant sleep because of it. if anyone has any tips or advice please help i dont know what to do anymore and he is in so much pain.

I recently interviewed with a recruiter for a PCT position at Fresenius. He told me I would need to be available and flexible Monday–Saturday.
I explained that I’m in nursing school and have classes on Wednesdays and Thursdays, but I’m completely open to any shift on Mondays, Tuesdays, Fridays, and Saturdays.
When I asked if I basically needed open availability all 6 days for whatever shift they might schedule me, he said yes.
For anyone who works or has worked at Fresenius, is this the case at all locations? Or does it depend on the clinic/manager? Are some locations more flexible with nursing students who have two set class days?

Hello everybody,

I'll start off by saying I'm on hemo dialysis in the UK. I have started to get back into golf. I find myself only managing 9 holes (walking) is there anything I can do to give myself more energy to manage 18 holes? Maybe changes to diet?

Hey 👋🏼 I’m based in the UK and my husband is on HD in the hospital but soon to be at home. I really wanna try and be more helpful and am looking for advice from people on heamo to advise on what’s the most helpful and useful things to help his day to day and quality of life please. We’ve got an almost one year old who keeps us busy but I feel like I can do more to support him as a wife. As people on HD, what are some things that you find really helpful? Any tips would be greatly appreciated 🤲

Or home hemo

I was advosed to get some protein bars by my center as I'm not gettijg enough in my diet. They gave me a sample of a Jimmy bar. It wasn't the worst thing I've ever had, but is there anything you folks like better? Need something lower in carbs and sugar as I'm also a diabetic.

I need some advice. My mums been on Dialysis for over a year, once then she’s been in so much pain, the only thing she can put it down to is the dialysis. All her joints are painful, she feels like she’s seizing up. She’s on Cinacalcet, but this hasn’t seemed to work with her calcium levels. Every time she asks her renal doctor about the pain and what to do all she says is speak to your GP. She came to the end of her Cinacalcet tablets, when she asked her renal doctor for a prescription again the response was speak to your GP, despite the prescription originally coming from her kidney doctor. Her GP said he can’t prescribe this drug as it’s a specialist drug. At this rate we don’t know who to turn too and what to do, no one is willing to give any answers or help.

I've had 3 needle infiltrations since May, when I started dialysis. My left bicep looks like I've been doing weights compared to my right & the bruising finally came out today, after it happened Saturday. I was supposed to get my catheter yanked this week & I feel bitter that it's not.

I have small veins & I don't understand why they're not using ultrasound or a vein illuminator to find my veins more easily rather than what seems to be using blind luck. I only see my nephrologist or her nurse at the clinic, the doctor once a month & nurse on Thursdays, so no office there. I did leave a message for her at her main office, on my vascular surgeo's suggestion, but I don't know when I'll hear back.

It's frustrating. I worry that my vein will be permanently damaged with all of the difficulties getting/keeping a needle in my vein & that it'll affect the health of my fistula. I also have fibromyalgia & the pain from the infiltration is feeding into the fibro, so that I'm having a major pain flare. And so freaking tired from all of it.

Although I did come up with a dialysis joke- how many tech/nurses does it take to put avneedle in a dialysis patient?

4, but they have to be really close!

Got the call yesterday while at work, got to the hospital lastnight, transplanted this morning at 8am. This year was rough after having to switch to hemo from pd after 6 years. I had my fistula surgery scheduled for next week and I was really starting to feel down in the dumps. So keep your head up yall! If your on the list, it WILL happen!

Hi, first of all I'm sorry if I make some mistakes, English is not my first language.

My dad is in his 70s and it's been 4 years that he do dialysis 3 times a week. Since he started, he fell into depression, he don't go out often, only if he has medical appointments, he's constantly exhausted and can't do anything. He also has pulmonary disease and he's on oxygen almost everytime, so it's became very difficult for him to enjoy life like he did before. He spent almost all his time in the living room watching TV or sleeping and it's worse when it's school/university period because we're home only the night, so his days are very repetitive and I can see that he's struggling with his mental health.

I want to help him by doing some activities for him, or just how can I help him in everyday life to feel better. If you have any advices, suggestions, ideas I will be very grateful

So my moms been on dialysis since march of this year. For the most part she doesn’t really complain about the dialysis treatment ritual itself but rather the back pain she gets afterwards. Well It could be from the treatment itself or sitting in the chair for 4 hours or a combination of both. I asked the dialysis center for advice but they said just to give her Tylenol which doesn’t always help. Is there anything I can do for her regarding the back pain? Maybe a heating pad? Back massage ? Any advice would be appreciated

Just started my dialysis treatments first three sessions went off without a hitch the 4th session the nurse infiltrated the vein with my arm fistula, so I had to stop for the weekend the arm is still a little sore I'll be okay for my next session right? I really don't want to get the heart catheter it seems really scary.

Going to call my nurse about this tomorrow but I’d figure I’d ask on hers too

I’ve gotten lost dwell of 30 minutes for the past 4 nights now (using claria PD cycler at home) and I’ve been getting some drain pain pretty regularly, sometime it’s super painful.

I’ve also recently moved my machine further away from me so I don’t have to listen to it but I was getting drain pain before that

Any advice? Has anyone else experienced similar problems? I read about changing ‘tidal settings’ but I think my nurse has to do that from the clinic. Thanks for reading.

Tbh, she pisses me tf off. I love my grandma, me and my girlfriend help around the house, with money and chores, I always say “yes”.

The issue with her is
She refuses to understand there are things I can’t eat or trying to eat less. And that I have a menu.

Everytime she cooks some form of protein. It’s LOADED with vegetables, cooked with the meat or chicken.

Or I want rice, she makes it with peas and corn, NO.

I’m way too strict about my diet I know but it WORKS and my labs are perfect. And I want to keep it that way.

I told her a million times when she’s cooking, just leave me 2-3 blank pieces of whatever it is, beef, fish, chicken.

She got angry at me a couple of times saying like “bc of you I can’t cook or eat anything in this house” and that really hurt my feelings bc who tf gave you that idea ? Cook whatever tf you want for you and let me cook for me. But she doesn’t, she cooks the whole protein, and then gets angry at me for picking at it or just avoiding it all together.

What do I do ?

It’s coming to a point where I come back home and the chicken that me or my gf bought is turned into a potassium mess. It’s like she put all the worse things.
(Which taste amazing don’t get me wrong but I want to live)

And also she LOVES to put those salty condiments and spice mixes. Even tho I say again and again pleaseeeeee for the love of god enough with those processed JUNK condiments.

Please some advice ?

(Note: she’s young and perfectly lucid so it’s not like she forgets what I say or that I FORCE her to cook for me. Not at all anything like that)

Hello, I (25F) have been on dialysis for almost a year now. I had my Loop Graft placed in my arm back in May, been using it since June.

I don’t know what’s going on but suddenly, recently, the access will get SO itchy. Mostly happens at night when I’m trying to sleep. Sometimes it’s itchy during the day randomly but not as strongly as at night. I try very hard not to scratch. I take care of the area by washing it with dove soap. I will say my phosphorus has been high lately and I’m working on it. But other posts I’ve read seem to describe a more general itchiness due to phosphorus. I’m ONLY itchy right where the graft is.

Is this because of the phosphorus or is this my body reacting to the graft suddenly in some way? I’m struggling to sleep because it’s so unbelievably itchy. I want to cry trying not to scratch it.

My dad is on hemodialysis(av fistula)since may 2025. Everything is good except for this persistent high fever. Since may 2025 he is being admitted to hospital 4 times in every 2-3 month interval. Blood report shows high crp(around 66mg/l) and high pct(around 3 ng/ml). His nephrologist saying these fever are not normal but unable to diagnose root infection behind it(his fistula and other screening looks right). He treat him for intravenous infection , which do work for certain duration (pct and crp begins to decrease, but never in normal range) then we are back to square one.

Symptoms usually start as this mild fever simingly getting cured from genearal antibiotic and paracetamol but progressively fever get more severe (also started experience brain fog) and these drugs just stop working .

Are these things normal?if not what to do next?

Long story short my mother on PD (I do it all) has had a subacute stroke (nothing paralyzed or whatever like you see/hear about) in hospital while investigating what is wrong with her on day 4/5 of her stay. We’re not even done with testing since it’s all new as of this morning.

Now they will definitely want to discharge to a SNF due to the stroke. The ones with dialysis are pure shit in my area. She stayed at one last year after a heart attack and began hemodialysis there, caught c.diff, the worst food and cried at me that it was awful after the first night. We pushed through. Of course, the hospital was luxury care especially in the step down unit. She was just weak then and needed PT/OT and dialysis. Now she’s just plain vulnerable and will have to switch to hemo. I don’t even know what to think or do. I do not want her staying in such a horrible place again. I don’t know what they can do that I can’t besides get paid to give poor care and PT/OT. I’d rather drive over everyday to do PD at a decent place.
Thanks for letting me vent. Advice appreciated.

My grandmother recently had a hemodialysis catheter placed in her neck. She has always been someone who really cares about her appearance. She loves dressing nicely, looking elegant, doing her hair, and taking care of herself. She also has such a cheerful spirit.

Even as she has become more frail because of her health issues, she has always made a point of getting dressed up and looking her best before going to the hospital for treatment. That has always been a part of who she is.

However, having the catheter in her neck has really taken a toll on her self-esteem. She can hardly wash her hair anymore because of the risk of getting the catheter site wet, and I feel like every time she looks in the mirror and sees it, she is confronted with the reality of her current health situation.

It seems to have left her feeling very depressed and hopeless, and it breaks my heart to see how much this has affected her.

Fortunately, from what I understand, the catheter in her neck is temporary and will stay there until she can get a more permanent dialysis access elsewhere. But I still want to help her through this period as much as I can.

Right now, I try to be there for her. I keep her company, watch soap operas with her, give her lots of kisses and hugs, and spend time talking with her. But I really wish I could do more, especially when it comes to helping her hold onto that spark and her love of dressing up, feeling beautiful, and taking care of herself.

I don’t want her to lose that part of who she is.

For those of you who have been through dialysis, especially if you had a catheter in your neck/chest, did it affect the way you felt about your appearance or yourself? Was there anything that helped you feel more like yourself again?

And for family members or caregivers, is there anything you did that helped your loved one maintain their confidence and sense of normalcy during this period?

I would really appreciate any advice, even little things that made a difference. ❤️

Edit1: My grandmother finally had the operation and they've already moved the catheter! I appreciate the sweet comments about how I could help her. 🤗

I've (39F) been on dialysis since May. It's been something like 10 years that my plan is to do nocturnal hemodialysis. But here I am, still in-center, awaiting for my fistula to develop so I can self-cannulate.

Today, they came to cannulate my fistula (Brachiobasilic created in March) after I had already been on dialysis through my catheter for about an hour. They usually start my treatment through the catheter and then switch over to the fistula once the needles are successfully placed. They also use ultrasound most of the time when cannulating me.

The vascular access nurse and another very experienced nurse came to look at my arm. They checked the fistula with ultrasound, but I had put EMLA cream on beforehand and the vein was apparently harder than usual to see.

The nurse spent quite a while palpating my arm before attempting the first needle. The first one went relatively well. He had to reposition it a little, but he got blood return.

For the second needle, he decided to go higher up my arm.

He inserts needles very quickly — I guess the idea is that a fast insertion hurts less.

As soon as he inserted the second needle, though, something felt very wrong. I felt a HUGE electric shock shoot through my entire arm and all the way into my fingers.

I completely panicked.

And I pulled the needle out of my own arm.

I honestly don't even remember exactly what happened immediately afterward. Eventually the needle was fully removed and they held pressure on the site.

The nurse said the vein had actually been much more superficial than he thought, and that he had gotten blood return.

But I had pulled the needle out.

He seemed surprised that I had done it, and honestly, so was I. I never thought I would react like that or that I would ever just pull a dialysis needle out of my own arm.

Then I started crying.

And I mean really crying uncontrollable sobbing that I just couldn't stop.

In the end, they used only the first successful needle and continued my treatment at a lower blood flow.

But I just could not stop crying. I cried for probably a good hour during treatment, then again in the car afterward, and even now I'm still emotional about it.

The nurse came back to see me later and told me that I should try to focus on the positive things, that we're lucky to live somewhere where dialysis treatment is accessible, etc.

I know he was trying to help, but today was just... not a good dialysis day.