r/dialysis

On the days of dialysis, I sometimes nearly faint which I’m assuming is due to hypotension. It doesn’t always happen, but I think it usually happens if I physically strain myself too much. By too much I don’t mean much, just standing on my feet to do some cooking and dishes or walking to the grocery store across the street. I get blurry vision and muffling in my ears that go away as soon as I sit down. If I don’t sit down, however, I drop on my knees and become unaware of what’s happening for a few seconds. Is it common due to dialysis or does it mean I’m not tolerating dialysis too well and they’re removing too much?

Hey guys, Does anyone have the calendar dates for the next couple delivery dates? My clinic never has a calendar for me and I forgot to check when I called in my last order. I’m planning on moving in the next 2 months and wanted to be able to plan it out with the dates in mind.

Thank you

I know this topic probably gets asked a lot here, but I’m struggling with the decision of whether to start dialysis now or try to hold out for a transplant.

For context: my kidney disease is likely genetic/developmental rather than autoimmune. My eGFR stayed around the mid-20s throughout my late teens and seemed stable, so I had stopped following up with my nephrologist for a few years and neglected my health. When I finally got labs again, my eGFR had dropped to 9.

A few months ago I got on the transplant list, and I’m extremely fortunate that my estimated wait time may only be around 2 years. Before hearing that, I had basically accepted that dialysis was next. Now I’m questioning whether it’s worth trying to avoid dialysis entirely until transplant.

Since getting serious about my health again, my labs have at least stabilized somewhat:

-eGFR has stayed around 9

-BUN dropped from the 90s to the 60s

-phosphorus went from high 6s to mid 5s

-most other labs are normal or improving

That said, my creatinine is still slowly rising (currently 8.19).

Symptom-wise, this is where I get conflicted. I definitely deal with fatigue and brain fog, but I honestly can’t tell how much is kidney failure versus my terrible sleep schedule, ADHD, stress, etc. I get occasional nausea, but only maybe once every couple weeks for a short period.

Though I also wonder if I’ve slowly adapted to feeling worse and just don’t realize how bad I actually feel anymore.

Reading experiences here has made me feel like most people don’t start dialysis until their symptoms become much more severe then where Im at now. Because my labs are relatively stable and I’m still functioning, part of me feels like maybe I could realistically make it to transplant without starting PD.

At the same time, I know dialysis decisions shouldn’t be based purely on numbers. I’m also trying to weigh quality of life. PD doesn’t seem easy either. I’m in my mid-20s, in school, and not working much right now, which probably makes this the “best” time in life to do dialysis if I have to. But I still worry about the loss of spontaneity, travel limitations, lifestyle changes, and honestly even the social/dating side of having a catheter.

So some of my questions are:

For those who delayed dialysis, what made you finally realize it was time?

Did you underestimate how bad you felt before starting and only realized after dialysis?

If you started PD young, how much did it actually affect your independence/social life?

How did you weigh the pros and cons of dialysis against living with kidney failure?

Is trying to hold out for transplant realistic with numbers like these, or am I thinking about this the wrong way?

Would really appreciate hearing from people who’ve been in a similar position.

i’ve had 2 kidney transplants 2002 and 2007. current transplant is just starting to fail but it’s almost 18 years! both kidneys from friends which may make things easier. i expected it to be wayyyyyy harder than it was. i arranged help at home, private trainers at home, etc didn’t need any of them. oops, sorry but i’m fine. you can expect to wake up feeling great, people telling you you look great. you will have a moonface from all the prednisone in the beginning. you will wake up catheterized which is a huge pain in the ass if you are a woman laying on that pee tube coming out of you. you will have an IV or two where massive fluids are flowing in you to prime your new pump. lot of nurses and aides checking how much you are peeing, lot of blood taking, lots of pills. i was hyper as all hell but they got mad when i stood up first night. next morning i fetched my donor from the nicer floor and we went to the starbucks in the hospital. he put my pee bag on IV pole stand and off we went! because they fill the donor with gas to have room to see what surgeon is doing he was burping and farting and seemed way more uncomfortable than me. i was just so happy and filled with gratitude!! too much blood pressure checking. pubic hair was shaved a bit. no flowers or plants allowed in transplant wing so warn your friends. i don’t remember much pain, probably asked for pain shot or codeine just to sleep in that noisy hospital. no drainage from incision. this was before the covid nonsense so there was no masking. 3rd day 2 people from transplant team came and showed me new drugs to take and with a pill box. prednisone, tacrolimus (prograf) and mycophenolate (celcept.) 3 pills and still those same 3 pills. no grapefruit or grapefruit juice. i’ve been a real juvenile auto-immune diabetic since 1971 so it was a great time to start newer insulins. papers for me to chart weight, blood pressure and blood sugar/dosage at home. went home on 4th day after stopping at the grocery store. friend thought i was nuts. i was hungry. don’t believe the hubbub that prednisone will make you gain weight. yes, it makes you anxious in the beginning just stay away from the fridge. walked around 2 big blocks twice a day. on day 7, back to transplant center for labs. sent back to gym. yayyyyyyyy. no weights heavier than 5 pounds, no upright stationary bike (did it anyway,) no sex for 14 days. (i made it 13.) “yes, chris, even with yourself.” donor went home on day 2 both times so i spent my day walking around hospital, sitting outside, reading newspapers, watching TV, and a lot of yacking on the phone. i’d leave a note on my bed that said, “walking around, call me on my cell phone if you need me. “ found out i wasn’t supposed to leave the floor. whatever. went home on 120 mg of prednisone and still very hyper. i remember after first transplant, maybe 10 days later telling my brother on the phone, “it’s a good thing i’m legally blind because i’d be running with the skater tweakers on sunset all night.” and i was serious. prednisone was dropped quickly. went back to yoga within a few weeks. the urologist puts “stents” in my bladder during transplant and those came out in about 3–4 weeks. that was why i wasn’t supposed to ride upright bike. embarrassing but not uncomfortable. ok, minor problem the first time. never any side effect from drugs. you are supposed to feel shaky from prograf but not look shaky. was still retaining water after first kidney. ankles and feet still puffy, gaining weight. it freaked me out. once i hit 130 pounds i went in front of the nurses station and yelled, “get oprah winfrey’s butt off my body.” i knew that would get them.. it did, nurse gave me one shot of lasix and i peed 9.5 pounds that first nigh!!! catheterized so i slept through it. realized once i got back to my hospital room the IV was the regular person one - with sodium and sugar!!!! straight gatorade. doctor changed that to bags without all that and back to regular weight. less insulin. life was great. have stayed away from salty anything since. (patient's story)

My hospital is adamant 85% if the correct figure for all their patients on PD. I daily have to manually drain at the end and take another 600 plus off. Looking at cycles I always have a few that are negative 200. I luckily rarely get drain pain but it’s no doubt as I’ve lots of fluid left behind. I’m pushing for a higher figure, I think if it was 100% or higher I would clear more and as far as I’m aware there is no danger in doing so unlike lowering it.

The lower figure also means on occasion I wake with such a full tummy mid dialysis cycles I need to manually drain.

What is everyone else’s threshold set to and have you challenged your health team to change it?

This song didn’t come from some big breakthrough. It came from a quieter, slightly awkward realization that my body has been doing a lot of heavy lifting while I’ve been… not exactly kind to it. So this isn’t a “love your body” anthem. It’s more like… a ceasefire. Or maybe just me admitting I don’t fully understand it, but I’m trying to be a bit less harsh.

https://www.thekidneycompanionapp.com/post/a-love-letter-to-my-body-because-we-re-in-this-together

https://preview.redd.it/cqyy7qp0b0xg1.jpg?width=1024&format=pjpg&auto=webp&s=68fded02c39ba71bba2157bd2c443079bce6fc3a

If you’re in a place where that feels far away, I get it. I’m not always there either. This is just one version of me, on one day, trying to meet it halfway. If it resonates, I’m really glad. If not, that’s okay too. Also, not a musical master piece. Just words i put to music.