she was only 5 years older than me. she had been in the hospital for weeks, but i expected her to come back any day now. i’m not even processing this yet

Fatigue is probably my worst symptom, because it doesn't seem like there's anything I can really do about it besides working around it and pacing myself (according to my Dr.) It got a lot worse since switching from in center HD to PD, they since increased my PD but it doesn't seem to have made a difference yet.

However it's also been really hard on me emotionally, because of negative self talk, if that makes sense? Like my brain tries to tell me I should be able to just push through it. Before starting dialysis I had below 15 GFR for over a year and lost a lot of time to being nauseous and tired, but I worked full time and went to school too. Now it feels worse than that, but I keep thinking I should be able to do x or y thing like I could on a good day. It's not fair to myself at all, because it is a very serious medical problem that's causing me to be exhausted all the time. But my brain keeps trying to tell me it's really because I'm not pushing hard enough.

It just makes me feel really sad, because the last couple months have really shown me how much of my energy I am losing to this disease.

So , I’ve been on dialysis since I was 17 still on dialysis and I just turned 30 .. I work as a fast food manager and because of my circumstance I still live with my family. I can’t help but feeling like I need to do more or like my life is running way from me but it is kinda hard with my illness .. it had never stopped be from living my day to day life I’ve even ran two 5k and one 10k.. I get told all the time I should be more grateful but I just don’t seem to feel like it.. or feel like a bum.. I am the only one?

Can anyone share their experience with uremic encephalopathy? when patient starts talking gibberish and gets super alert. does it get better? share whatever you know abt this😭

I just found this sub and it honestly feels like a godsend. My dad is in a unique situation and I honestly wish it wasn’t unique. He was on dialysis for about 6 years, got a transplant that was successful for another 6 years, then had a heart attack in May which caused him to go back to dialysis. My dad is also diabetic and has low blood pressure issues. His kidney doctor hasn’t ruled out his transplant kidney as dead yet, but honestly we’re not hopeful. So while he’s in dialysis now he is still taking the anti rejection medications. He has had a history of heart issues, and the attack in May set him back, he had to be in the hospital for 3 months due to a combination of induced coma, septic shock, and just overall helping him get his health back. He came back home about 2 months ago and his major issues have been the fatigue, weakness (due to dialysis and being bedridden for 3 months, he has to use a walker now) and nausea. His Dr prescribed him mirtazapine as an appetite stimulant and I think it’s been working. However, my main concern for writing this is that he has not been able to sleep. He’s literally sleep deprived, and when he is “sleeping” his eyes are either open or he’s sleep talking. He has major hallucinations. His doctors know all this but honestly they haven’t been much help and I’m starting to give up. Has anyone experienced anything similar to this before? If not, I’d appreciate any advice with how to deal with his situation overall

I had a phone interview and an in-person interview at one of their clinics. The in person interview was with 2 managers, and a higher-up. I thought it went well. I applied as an LPN and I have been one for around 7 months and have worked with pediatric patients who have chronic conditions. Most say that you don’t need dialysis experience to work in dialysis and that they will train you, so I said why not. Though they were a skeptical about my experience during the interview. During the interview, they scheduled a shadow day with me and I thought it went very well. They showed me what working in dialysis is like and I had a good relationship with the team. The manager also reassured me that she would speak in my favor to the higher-up. But I got rejected 3 hours after the shadow day via email. I was so disappointed. I am wondering what went wrong. The email say that they chose to pursue with somebody whose experience better match the position. I really want to work in dialysis. I really had hopes I would get the job. Anybody with the same experience? Does Anybody have any advice? They would be greatly appreciated.

I am currently weighing my options and want to go PD but even while I'm sleeping I hate the idea of being tied to a machine for hours at a time. Ambulatory PD except for while I'm filling or draining I can be on the move.

I am writing this while sitting right beside my wife, my heart breaking with fear and helplessness as I watch her life slip away. She has been on dialysis for a long time, and recently, her condition has taken a terrifying turn for the worse. Every single session, I put my hand on my heart, terrified of losing her.

We are currently in the middle of our journey; we have already started preparing for a kidney transplant and completed the initial compatibility tests, finding a great tissue match. However, the road ahead is still long and difficult, and the hospital and bureaucratic procedures here are an absolute nightmare.

Our lives are consumed by overwhelming complications:

Dangerous Blood Pressure Spikes: During sessions, her blood pressure shoots up uncontrollably to 180, and sometimes hits 200 to 240.

Unbearable Itching: She suffers from relentless, severe itching all the time, to the point where she aggressively claws at her entire body until she wounds and bleeds herself out of pure agony.

Post-Dialysis Fainting: After a session ends, she sits for 30 to 60 minutes before completely blacking out and fainting.

Total Exhaustion the Next Day: The day of the session and the entire day after, she is completely bedridden, unable to move or control her nerves.

Synthetic Graft Bleeding: After multiple failed access surgeries, we had to get a synthetic graft. However, the disaster is that after every single session, it bleeds heavily for a long time, draining her of vital blood and requiring frequent blood transfusions—which doctors warn might delay our transplant process.

I am sitting right next to her, unable to even work, terrified of losing her. Has anyone here ever experienced these horrifying symptoms after long-term dialysis? How do we control this dangerous blood pressure, the graft bleeding, the brutal itching, and the fainting? Please, if anyone has walked this rough path, tell me what to do.

My gf is on pd dialysis, her home solution bags have changed and its saying to connect all clamps every time we go to set up the PD machine, any advice on this? Uk based

Hi! I’m 22 F and started dialysis in August. They think it’s genetic but aren’t sure idk if that’s relevant. Does anyone else experience dizziness and like their head and hearing is underwater when walking or standing sometimes? That’s how I can best describe it. It’s what I imagine passing out would feel like. I talked to my nephrologist and he doesn’t think it’s my BP as it’s normal when I take it after these spells. Anyone ever come across this? It’s happened a couple of times before I started dialysis but now it’s more frequent ie. once every 1-2 months to now at least once weekly
ETA I do PD nightly with cycler

Can someone tell me which one is better?

I have chronic kidney disease, and my doctors have been talking about diyalasis and they are saying peritoneal diyalsis is a better option for my case. But I don't want to have a foreign object in my body. Also does PD make you gain weight? And please just tell the pros and cons of each. I'm having a hard time choosing which one is better

My papa has been going for dialysis for 6-7 years. At this point, not only his kidneys have failed him but he's now a heart patient as well. The thing is, there's something in his throat like, he can't speak, he can't eat, he can't sleep as well because of the contraction in the throat.

We used to massage his throat with oil whenever he'd feel that, but now it has exceeded so much that he can't even eat yk and it's hurting me alot to see my father in this state.

From a year, he has been going for dialysis two to three times a week, and just yesterday he went for dialysis third time a day. What could it be about ? Can someone please help us out. Even the doctors can't diagnose it that what could it be about yk? Please please help us out. He hasn't eaten from two days, and hasn't slept well as well. Please.

My clinic is doing a raffle that ends in like three months. Each treatment or reschedule we attend, each time our labs are in range, and each time we only take off 1.5-2.0 of fluid, we get a ticket. I have never won anything in my life. Ik the winner will be like what happened in the Hunger Games- someone with their name in once or twice.

Obviously, I get why they’re doing it, but I’ve never missed a treatment or a reschedule, have good labs most of the time, and physically can’t remove that much fluid anyway. It’s kinda like when you’re a kid destroying people at some competition or another and someone is like “time’s up, next point wins!” (Thanks to a different Reddit post that brought that up).

Anyway, ik I’m complaining and being immature about this lol.

Hi I’m Samantha, I had a previous account that I deleted a bit ago and I just started anew. I posted a few times in here when I had my vas cath placed and first started.

I do in center HD and recently my schedule changed from 3 days a week to 2, with extended sessions. I have a loving husband and him and my mother both support me a lot. This process has disabled me over the past year and I’ve lost a lot of self reliance, I’m happy to have them by me. I also feel very comfortable and supported by the technicians and staff during treatment.

I am an Orthodox Christian and trust God more than anything, that’s how I remain positive when things feel hopeless.

I’ve been on the transplant list for 50+ days and my brother recently tested as a match with me, he has to have genetic testing done before given the ok to donate. Hopefully I will be out of this soon.

Anyone here doing home hemodialysis on a well? I would have few questions.

Like, i know they often go hand-in-hand but a lot of people genuinely don’t think dialysis has anything to do with your kidney and just think it’s diabetes. So people irl and online tell me to treat my diabetes as if that’s a cure for kidney disease

So tomorrow is a pretty big day for me. After 4 years on dialysis 3 years trying to get on transplant list I have finally accomplished everything they asked me to do to get on the list and tomorrow I get blood work done and meet the surgeon.

But I'm terrified that they're going to tell me that no, turns out I'm not eligible for transplant for one reason or another. Im so scared. I don't know what to expect.

Sorry I just had to get this out to people who would understand. Thanks for listening!

Hello everyone!

I’m asking for advice regarding my mom, who is currently on Manual Peritoneal Dialysis (CAPD). She would like to travel internationally from the United States to the Philippines, and our family wants to find out if this is possible and how to prepare for it safely.

Our biggest concern is the long flight. We want to know if anyone has experience traveling internationally while on manual peritoneal dialysis, especially on a flight that lasts many hours.

Is it possible to skip a dialysis exchange during the flight and resume treatment after landing, or would that be dangerous?

We are worried about how long she would be without doing an exchange while traveling, including airport time, layovers, and the flight itself.

For those who have traveled by plane while on CAPD, I would really appreciate hearing about your experience.

Did you perform your exchanges during the flight, or did your doctor allow you to adjust your schedule?

How many hours were you traveling, and how did you manage your treatment?

Did you keep your abdomen filled with dialysis solution during the flight, or did you travel with an empty abdomen?

What precautions did your nephrologist recommend?
We want to make sure my mom can travel safely without putting her health at risk.

Thank you so much for sharing your experiences and advice!

Let me know if you have any ideas on what to do with them thanks.

Hi everyone!
I’m 38 years old and have been on peritoneal dialysis (PD) for about a year now. I’m wondering if anyone else experiences restless legs at night because it’s becoming incredibly frustrating.

Almost every night, I get this awful, uncomfortable sensation in my legs. It’s difficult to describe, but it feels like I constantly need to stretch them, move them, or change positions. No matter what I do, I can’t seem to get comfortable. It’s not necessarily painful, but it’s incredibly irritating, and some nights it makes falling asleep almost impossible.

I’ve mentioned it to my doctors, and they initially offered to prescribe another medication. However, I’m already taking so many medications that I really didn’t want to add another one.

Instead, they suggested magnesium supplements, which actually seemed to help for a while. Unfortunately, they’ve stopped working, and the restless legs are back almost every night.

I’m curious whether this is something other dialysis patients experience, particularly those doing PD.
If you’ve dealt with restless legs, what has helped you? Have you found anything that provides relief without adding more prescription
medications? Does it ever get better?

I’m honestly just desperate for a decent night’s sleep at this point!
I’d really appreciate hearing about your experiences. ❤️

I wanted to post this to see what people's favorite foods are on a renal diet. I have a couple of kidney friendly meals that I enjoy regularly. I'm 26 and my GFR is 5, for context. I've been told that I'm a model patient, as far as nutrition labs go. My favorite meals are nachos, burrito bowls or tacos, and dumplings. I use low-fat dairy products (sparingly), no sodium hot sauces for the Mexican food, and ground turkey or chicken for the meat. I make my own dumpling sauce that has about 400mg of sodium per serving, if anyone wants the recipe.

I know my dry weight, it's been 84 since spring. Today I came in at 85.4 and my weight leaving was 85. I mentioned it to the tech who weighed me and reweighed. Still 85. She checked the machine and I was only scheduled to have .4 taken off.
I'm wondering if it was a mistake since I always leave at 84. I was the last patient to leave today because someone else didn't come. I'm wondering if she didn't want to say someone must have screwed up because then what could they do at this point?
I'm a little concerned because it's Friday so I have 2 days to gain fluid, and I don't want to be there Monday with 3 kilos to be taken off.
Has anyone ever had this happen?