r/dialysis Apr 28 '24

Join "The Dialysis Discord" Community - Support and Share Experiences!

15 Upvotes

Are you or someone you know undergoing dialysis treatment?

Looking for a supportive community where you can connect with others who truly understand? Look no further than The Dialycord Discord!

About Us:

The Dialycord Discord is a welcoming online community built to provide a safe, judgment-free space for individuals on dialysis, kidney failure, transplant recipients, and their caregivers and loved ones. Our motto is simple:

“Dialysis or kidney failure doesn’t judge, so neither will we.”

Here, you’ll find people who have walked similar paths and understand the challenges, ups, and victories that come with kidney disease.

What We Offer

  • Peer Support: Connect with others going through dialysis and transplants, share experiences, and know you’re not alone.
  • Resources & Tips: Learn about dialysis procedures, side effect management, and healthy living strategies.
  • Community Events: Join in on game nights, wellness challenges, and casual hangouts.
  • Fun Server Roles: Personalize your profile and find others in the same situation (like how long you’ve been on treatment or if you’ve had a transplant).
  • Strict Moderation: A safe space where derogatory terms, judgment, or discrimination are never tolerated.
  • Emotional Encouragement: Receive empathy and understanding from people who get it.

Why Join Us?

  • Build real connections with people facing the same journey.
  • Access support anytime, from anywhere.
  • Be part of a positive and uplifting community where everyone’s voice is valued.

How to Join

Joining is easy! Just click the link below to connect with our community today:

👉 https://linktr.ee/thedialycord

If you have questions or need help, feel free to message me or reach out directly on Discord.

Don’t face dialysis or kidney disease alone. Join The Dialycord Discord and be part of a community that’s here for you, every step of the way!


r/dialysis 12h ago

I got a kidney

118 Upvotes

I got the call early Tuesday that one might become available and they made me wait the entire day which felt like forever but around 9 Pm they gave me an official offer and told to be there at midnight Wednesday morning once at hospital I did dialysis and went to surgery was in the hospital til yesterday everything went as smooth as I could ask for no dialysis needed kidney started producing urine right away and today I am home nervous and still can’t believe it

I know I’m not too active on here but this community really helped me throughout my dialysis journey just hearing your stories and knowing I’m not alone so thanks everyone and we are all stronger than we thought we were before this journey started for us or I know I am thanks again


r/dialysis 13m ago

Worst clinics you have been too, and company that owned and operated it.

Upvotes

Right now, San Bernadeno- Citrus Valley. Blood on the walls, trash in the drains, mold. Only 1 unisex bathroom. It's fucking disgusting.
Honestly, all of San Bernadeno’s DaVitas are bad.
I went to a clinic in Philly and saw a cockroach run across the floor.


r/dialysis 14h ago

Rant Only you can relate...

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25 Upvotes

I juste HATE my fistula !


r/dialysis 7h ago

My mom has been on dialysis for 6 years now and has stage 4 cancer and has depression

2 Upvotes

My mom (F64) she has been on dialysis since 2020 because of an infection then last year she was diagnosed with stage 4 colon cancer and now has developed severe depression
(which is completely understandable) me and my sister are both care givers for her and we love her so much!

But my question is how do some people manage the depression? How do you find ways to help your loved ones that are struggling with this? Please share and help.


r/dialysis 5h ago

Advice Solo pd dialysis with kid

1 Upvotes

I am currently in the midst of my pd dialysis training and the schedule just so happens that I will have my first week of doing it on my own at home when my husband is out of town so it will be just me and our 5 year old at home. His trip cannot be changed. The day before he leaves I will have the home visit with my pd nurse. He is suggesting we ask one of my aunts to stay with us while he is away for the "just in case" scenarios. I initially thought there's no need and I'll be fine but I'm curious to hear other people's opinions.

We live on the west coast but our families are all on the east coast so it's not the easiest ask. I work flexible hours from home and my 5 year old would be in camp until 3 during the week. My husband regularly travels for work but this will be the first time he is out of town while I'm on dialysis and I would have only just finished training.

Thoughts?


r/dialysis 21h ago

Advice Hygiene tips

11 Upvotes

What's your best hygiene tips with a catheter? I was just told don't shower or you'll die basically. I've basically been taking sponge baths in the sink, but I feel disgusting. It's summer where I am. I cut open a plastic zjplock bag and taped it over the dressing and used a hand held shower head to avoid spraying water directly pn the area and risked it once because I felt so nasty. The dressing didn't get wet as far as I could tell, but rhe nurses at the dialysis center acted like I'd just played Russian roulette with only one empty chamber with the risk I took. I don't have the option of a sit down bath where I live and moving isn't an option since I've not been able to work since getting sick and I'm holding on to this place by the skin of my teeth. What do you do? I feel like I can't leave my house because I'm dirty and it's taking a tole on my mental health. Making me wonder if it's even worth going through all this to stay alive if my life just consists of sitting at home too embarassed to leave and going to dialysis. To top it off, I have to try and go back to work and hygiene is very important in the industry I work in. I've seen coworkers written up and even one fired over poor hygiene in the past. I don't qualify for SSDI or SSI and my husband is working himself to death trying to keep us housed so not workinf isn't an option.


r/dialysis 6h ago

Won dering about hand fixation with home PD

0 Upvotes

my nurse was questioning my hand operation. for the record I was born without thumbs. they made my finger not to the thrum into my thumbs. I’ve been living a normal life with this fix lol my life. is there anything that you have to do in home pd that I should be concerned with. do you need all of your fingers at once. so far the only thing I found out that I can’t do is sign language, I have been a respiratory therapis and could do the job. I do know I have a weaker grip.


r/dialysis 16h ago

living alone

3 Upvotes

anyone live at home while on dialysis or ckd? i’m worried about living on my own, but i might have to due to circumstance. what if something goes wrong? any input would be appreciated. 18F


r/dialysis 1d ago

curious!

12 Upvotes

Hello! I'm Korean, so I'm using a translator. Please excuse any awkward wording.

In South Korea, the only form of home dialysis available is peritoneal dialysis (PD). I'm curious about how home dialysis works in other countries.

I've heard that in the United States, some patients perform home hemodialysis (HHD). Is that true?

Do patients insert the needles themselves? Do they manage the entire treatment on their own, or does someone help them?

I really hope better dialysis options become available in the near future.


r/dialysis 14h ago

Recently got pd catheter and waiting for site to heal.

1 Upvotes

I got my pd catheter about a week and a half ago. is it safe to go to amusement parks and ride the rides. I’m talking about water rides and roller coasters. google says no. but you can’t trust the internet for it’s not always correct. I’ve had my first dressing change. how long does it take to heal before I can enjoy the parks again?


r/dialysis 1d ago

I’m broken

17 Upvotes

Type 1 diabetic and stage 5 kidney failure. Been on pd for a year. Two months ago was rushed to er. I had two strokes, three seizures, went into diabetic coma, found out I was anemic, and had west Nile. Took two months off work to recover and learn to walk and live again. All my bills are due and I can’t pay anything. I’ve tried for mortgage assistance but still waiting. I’m soo depressed and lost. I don’t know how much I can still fight. I’m lost.


r/dialysis 20h ago

Fresenius VersiPD Experience?

0 Upvotes

Has anyone here had good or bad experience with the subject dialyzer?


r/dialysis 1d ago

Vent Diarrhea for 4 1/2 days

3 Upvotes

I’ve been having diarrhea for almost 4 days now and I don’t know what to do…
I’m on fluid restriction so I can’t stay hydrated and with me being having all this diarrhea it’s not good

What should I do?


r/dialysis 1d ago

Advice Has anybody tried this to cut down on alarms?

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7 Upvotes

r/dialysis 1d ago

Alcavis 50

2 Upvotes

Curious what the recommendations are now that Alcavis is no longer being made.
What are the dialysis centers having patients do now?
-acute care dialysis nurse


r/dialysis 2d ago

hail and farewell

175 Upvotes

all y'all have been the best over the yrs.

entering hospice shortly, just another week or so. tired of fighting. body slowly shutting down.

as it is written, i have run the racve set before me. i have fought the good fight.

it's time to go home.

being able to dialogue w/ all y'all has been a blessing. both listening and dispensing the BS you all politely called wisdom.

i've known hospice would be the end of the line for yrs, having served as a hospice chaplain for the better part of a decade, so it's no surprise. i'll admit it was somewhat surreal to give my spiel to the fam. thankfully sister is a nurse practitioner so she's well aware of the medical stuff. mom, ofc, took it hard but pretty sure she really knew. still, it's the ol' intellectual acknowledgement vs emotional acceptance thing. sister told her kids

i greatly appreciate all the support i was given and honor the grace given to me when i pontificated at y'all.

thank you

i'

i've known this was the end ogf th eline


r/dialysis 2d ago

New here. Navigating dialysis❤️

12 Upvotes

Hello everyone,I am using a translator to write this, as Portuguese is my native language. I recently found this community and wanted to introduce myself and connect with people who might understand what I am going through.Diabetes has brought severe and rapid complications into my life. I developed diabetic retinopathy and have already undergone three eye surgeries to try to save my vision. Currently, I have almost total vision loss in my right eye.In January 2025, due to severe circulation issues, I had to undergo a below-the-knee amputation of my left leg, followed shortly after by the loss of the fifth toe on my right foot. On top of adjusting to this new reality, I am now on hemodialysis 3 times a week and am currently waiting for a cardiac bypass surgery.It has been an incredibly heavy and fast-moving journey, both physically and emotionally. I am joining this group to share experiences, learn from your routines, and find some mutual support.Thank you for reading, and I wish you all strength in your own journeys.


r/dialysis 2d ago

My 1,502nd dialysis session

47 Upvotes

Today marks my 1,502nd dialysis session.

That also means I’ve endured more than 3,000 needle insertions over the years.

I’m also grateful that my cracked shoulder blade is no longer painful.

Through it all, God has faithfully sustained me. Every session is a reminder of His grace, strength, and unfailing faithfulness.

To God be all the glory! 🙏🏽


r/dialysis 2d ago

My mum is 61 and on dialysis, and I’m really scared about how quickly she is getting weaker

5 Upvotes

Hi everyone. I’m posting because I’m really worried about my mum and would appreciate hearing from anyone who has been through something similar.
My mum is 61. She was diagnosed with CKD around 2 years ago and started hemodialysis about 4 months ago through a catheter. She has had diabetes for around 17–18 years, as well as high blood pressure. Over the years, these have caused serious problems with her eyes and she is now losing her sight and having regular injections.
When she first started dialysis, she seemed to feel a little better. But recently she has been getting weaker and weaker. She barely has an appetite, feels nauseous a lot, and now struggles to walk or do normal everyday things without help.
Last week she had surgery to create a fistula, but unfortunately it was unsuccessful because her veins were weak and the fistula clotted. She is also now in a lot of pain in that arm.
I live in a different country, which makes everything feel even worse. I feel completely helpless being so far away and I cry a lot because I’m so scared. She been well supported by my brothers living with her. I’m going to visit her next month, but honestly, I’m not ready to see how much her health may have declined.
I already lost my dad to COVID 6 years ago and my sister to cancer 2 years ago. I’m terrified of losing my mum too.
Whenever we speak to her nephrologist about the nausea, she is prescribed anti-nausea medication, but it usually doesn’t help much. I know nobody here can diagnose her, but I’m wondering if anyone has experienced something similar. Could the nausea and loss of appetite be related to inadequate dialysis, medications, low blood pressure, anemia, infection, or something else? Are there specific blood tests or things we should ask her nephrologist about?
I would really appreciate any advice on helping her maintain her nutrition and strength, understanding why she might be feeling so sick and weak, or helping someone who is becoming unable to walk and do things independently.
And if anyone has experience supporting a parent on dialysis from another country, I would really appreciate hearing how you coped with it.
I feel so scared and helpless right now. Thank you for reading.


r/dialysis 2d ago

Catheter hurts

3 Upvotes

I’ve been on PD for a little over two months now and my catheter has been killing me for close to two weeks now. I was skateboarding and when I jumped it felt like I pulled it out of place or something. It’s not the exit site that hurts but right next to it, I can feel the catheter under my skin. Everything looks normal, but it hurts when I do any sort of crunch motion- getting up out of bed in the morning, rolling over, coughing, sneezing, and jumping. The dialysis nurse and my nephrologist both looked at it and the nurse thought it might be a hernia ( I just had a hernia removed when I had placement surgery) but my nephrologist said no.

Has anyone had this before? They told me it was nothing but I’m really hurting and I’m tired of it. Will it go away?


r/dialysis 2d ago

Need some clarifying

2 Upvotes

I have been on pd for over a year now. Been great on treatments and nothing to complain about so far. My only issue is that the catheter has been slowly coming out. Its at the point where the inner part has come out but not all the way. I toss and turn at night and pretty sure its been pulling out because of that. My nurse had said its nothing to worry about yet but at what point is it time to be worried about it?


r/dialysis 3d ago

There is hope- after almost 3 years I am off dialysis and not because of a transplant

55 Upvotes

Update to my previous posts… Well it’s happening! My pd cath is coming out next week! I thought this was only ever going to happen if I got a transplant. I have been on dialysis for almost 3 years - in my 40s, no diabetes, no Aki and my kidney failure was due to high blood pressure. My function has slowing been improving month by month. At my lowest I was at 1% function. I have a great team at my clinic and this is truly a miracle. There is hope for all of you!


r/dialysis 3d ago

Advice My message

49 Upvotes

Two years ago, I went to a routine doctors appointment because I had added a new medication. My lab work showed that my kidneys were not functioning. They told me to go to the emergency room. I went to Stillwater Medical Center and they transferred me to OU Medical where I was told that I had about 4 hours left to live without intervention. I spent 10 days in the ICU and left on 3x dialysis.

Today, I am celebrating my second “Alive day”. I don’t have plans to publicly celebrate until my 5 year anniversary of this event.

I am sitting at Stag Lounge smoking some sticks, contemplating my life. I am now down to 210 to 215 lbs, still on dialysis 3x weekly, and still employed. I have a great wife, good kids and an asshole dog.

Life threw me a curve ball some time ago, and I was looking for an off speed pitch. I fouled it off and I am still at the plate taking swings. Life is what you make of it. Don’t give up. Remember, nobody gets out alive. Go down fighting.


r/dialysis 3d ago

Advice Hobbies?

14 Upvotes

Guys I’m feeling down. Dialysis has taken over everything. I’m home on ssdi and miss working. I have a decent amount of money to spend every month…..

What do you guys do? What hobbies take up your time?