r/dialysis

I’ve been on dialysis since I was 22, and I’m 28 now. Sometimes I genuinely sit back and wonder where those years even went.

Sometimes the hardest part of dialysis isn’t even the treatment itself. It’s the grief for the life you didn’t fully live when your body still allowed you to.

I spent so many years just studying, staying home, avoiding risks, not socializing much, not traveling, not even trying simple things people take for granted — random foods, drinks, long outings, freedom.

Now I can’t even drink water freely.

And some days I sit there thinking: if I ever get my life back, even for just a year or two, I would live completely differently. I’d travel. Try everything. Meet people. Stop treating normal days like they’ll last forever.

The weird thing is… “normal life” itself feels nostalgic to me now.

Even something as ordinary as the feeling of a full bladder or needing to pee feels like a memory from another lifetime.

I understand different personalities within a dialysis clinic, but have you ever had to remind a tech that they were not a nurse?

For example, I recently needed to ask clinical staff RN about getting referred to a PCP locally.

I asked again for the nurse. The tech proceeds to say, “the nurse is not gonna know anyway”.

I’ve had other instances when the doctor was not available, I ask for the RN about clinical questions and have the same issues with a specific techs interjecting and giving smart Alec answers.

Has anyone have this type of issue at their clinic?

I go twice a week to an HD clinic. Typically I experience these symptoms on the Sunday since the weekend is the longest period I go without treatment)(I have sessions on Mondays and Thursdays)

Now suddenly I'm getting those symptoms in the middle of thd week as little as one day after my last session. I'm worried I might be getting a pleural effusion or CHF.

Anyone dealt with something similar? Thanks.

My mother is 54 and just started dialysis. She had Mitral Valve Replacement Surgery (MVR- Open Heart Surgery) on 2016 and since then she is on ACENOCOUMAROL. Her AVF site is having huge bruises. Is it normal? Is there anyone with similar condition? Please advise.

I recently switched from PD home therapy to hemodialysis and have a tremendous amount of supplies that i can no longer use. What can i do with it all? Its literally thousands of dollars worth, and i would love to pass it on to someone that needs it. Is this even possible? Everything is in its original packaging and sealed boxes. Anyone have any suggestions?

How long do you guys usually wait until you drop it on somebody.

My wife has had kidney failure for 6 years. When I first met her , she told me the scars on her arms were from a surfing incident. She's polynesian , so it made sense because I was in hawaii so I didnt question it.

About a week or 2 later is when she told me the truth. She was scared that I would immediately judge her and run off. I didn't see a big deal with it.

Few months down the road i remember taking her back to her place on one day and she just broke down crying in the car. ​ Saying she never expected somebody to stick around as long as I did.

I never realized the amount of stress that people go through because of the problems that come with it.

The Medicines the paperwork multiple surgeries. And that was within the first few months of being married.

But I still love her , and I'll never let her go. She's everything to me.

I’m a PCT and today I returned the patients blood, got his standing and sitting blood pressure, removed his lines and did the heparin locks, and all of a sudden his eyes just rolled back into his head and they did CPR for a while and they took him to the hospital but he seemed dead. I feel terrible. There was a nurse watching me so I know I did everything correctly but it’s so scary and sad to see someone suddenly die in front of you. He stood up and his blood pressure was high enough that we would let him leave. Then he sat back in his chair and his eyes rolled back into his head and then all the nurses and ems did cpr. I know it’s not my fault but it’s so sad and scary to see someone pass away in front of you.

I’m just so sad.

I've been unemployed since starting hemodialysis and it's been about 3 months. I'm fairly young (in my 20s) and didn't have much industry experience to begin with. Now that I go to the dialysis center 3 times a week and then also find myself needing a huge nap after every session, I just can't do anything for the entire day on these days.
Because of this, I can't imagine myself working for a while and finding a full/part time job in my industry is hard in itself without health issues. I feel like I'm wasting my life away but don't know what to do about it.

I currently get financial support from my family, but I can't keep doing that. I also don't feel productive at all, it seems like I don't do anything throughout the day. And before I even know it, it's night time again. I didn't even realize it's been 3 months already since all this started and it seems like l've done nothing throughout these 3 months. Just wake up, go to dialysis, nap, a little bit of whatever, then sleep again. I try to exercise now more and more to build my strength back. And yeah that’s all I really do. I will eventually start applying for jobs again, but the gap on my resume will get bigger and bigger at this rate.

What should I really do? What did going back to work look like for you? Also, how do you pass time and stay productive when you’re unemployed and going through health challenges? It’s one thing to be on a bit of a break and go back to normal life, but it’s another when you don’t know when this normal will start again, so you have too much time on your hands. I’m really not sure how I’m supposed to deal with myself. I don’t even know what my question is by posting this but hopefully someone can relate?

Edit: thanks for all the recommendations about SSDI. I am aware of it and have discussed with my social worker.

After 7 years of dialysis, I finally got a call for a cadaveric kidney transplant. I still can’t process it properly. My brain is switching between hope and fear every few minutes. Dialysis became such a normal part of life that this feels unreal now. I’m scared of surgery, rejection, complications, everything honestly. People who already went through a cadaveric transplant, what was going through your mind before surgery? And how different did life actually feel afterward? I honestly don’t know what to do.

Update: waited in the hospital for hours but it got cancelled in the end. Thank you everyone for the support and kind words. Honestly reading the replies helped me a lot while sitting there stressed the whole night and morning. Back to dialysis again from tomorrow.

Dumb question but how can someone explain to their gym partner or personal trainers why they cannot use standard high-protein supplements or pre-workouts?

I'm new to PD and things are going well. I will have some travel in a few weeks for unrelated medical surgery. I know I can pack up my supplies and do my manual exchanges as usual as long as I keep to high sanitary conditions. My question is, What do you take to hang your bag on for your manual exchanges? I think trying to take my IV pole along would be extra cumbersome. Drains are not the issue but I don't want to have to hold my bag above my shoulders for 15 min or so while it all "loads". Any suggestions? Thanks!

I found this so heartening and encouraging :)

I swear even just a few sips makes me feel so bloated. Mostly from coffee and matcha. Teas I feel somewhat okay.

Hi! I’m the care partner for my grandfather’s PD dialysis. The original plan was to have a couple family members involved to assist (please note that my grandfather and grandmother can’t run the machine) but unfortunately that plan hasn’t been working out.

Family members all fall into the following categories: refuse to be involved/claim to want to help but flake/wants to help but has a mental breakdown crying when the time comes/shows up on occasion to critique me but won’t commit to helping. Lol.

I need to have some sort of back up option for emergencies or if I get sick. Does anyone here have experience having a nurse come in to help sometimes and how finding someone to do that generally goes? Is that even an option?

I plan on reaching out to the clinic to inquire about this as well but would deeply appreciate any insights that can be provided here. Thank you.

Hi Reddit,

I'm 39F and I'm starting dialysis tomorrow after almost 14 years break. I had to have a catheter placed as my fistula is not yet ready. I used to rock climb when my kidney function was better and before I had my daughter, and my husband and I had just started to get back to climbing again few weeks ago with our daughter as a family activity.

I'm wondering if I'll be able to climb once the catheter is fully healed.

Any experience with that anyone?

probably gonna be needing dialysis… i’m around 20 years old so this is such an upset to me… is dialysis and the tiredness and the pain and the disrupt all worth it?

Had anyone doing ambulatory dialysis had no dialysate flow, even with full frangible broken and valve in catheter open?

As I was taking my aunt of diaylsis and as I was doing her reinfusion it was saying art -300 so I checked clamps blood clots kinks in the line and it was all fine so I reconnected her and went back to normal and when I disconnected again started doing it again. Any advice greatly appreciated.