Dialysis: How many of us are here?

Huge 🙂 thanks for starting this thread.
My dad’s been hovering right on the edge of needing dialysis for about a year now—just waiting to see if he can hold out a little longer—so hearing from people who have actually lived through it would be incredibly helpful.
Mainly, I'm wondering how brutal the physical adjustment to dialysis really is? I've heard stories that the body takes a massive hit during the transition.

We’re looking at stage 4 kidney disease here. He’s been stuck at this level for about a year now. Every month, he has to go in for bloodwork—checking his creatinine, urea, potassium, sodium, phosphorus, the whole nine yards—and then his doctor tweaks his meds based on the results. He’s probably popping something like 30 pills a day. I can't help but worry his stomach is going to take a beating from all that.😲
Once the day comes where he actually needs dialysis, it’ll be hemodialysis. They haven't even brought up peritoneal dialysis to him, which is weird, considering they have posters for it plastered all over the Mayo Clinic.

My mother goes to dialysis on a regular basis, three times a week... she’s taking all sorts of different medications too..
She really needs to drop a few pounds so they'll finally put her on the transplant list... right now she’s been stuck on dialysis for about three years
Otherwise she seems alright, it's just that when the heat hits, she gets so weak and her blood pressure drops, and then she just has to lie down..

Bringing this back up to the top 🙂>

I'm looking for some insight on peritoneal dialysis. My dad needs to start dialysis soon, and he just can't make up his mind between hemodialysis and the peritoneal route. The doctor told us the choice is basically up to us. Personally, I think doing it at home might be better than trekking to a clinic every other day. I'm wondering how often you actually have to do it at home—I assume there's a choice between doing it several times a day or a longer seven-hour session overnight? 🤷I'd love to know how the whole process works from someone who actually knows.
Thanks

Listen, my mom is getting ready for dialysis, and she’s about to undergo those tests to see how much longer her kidneys can actually function on their own before they give out entirely. Obviously, starting dialysis isn't a death sentence, but our whole family is incredibly stressed because I've heard nothing but horror stories about how short life expectancy becomes once you're on it, so I'm wondering how you all deal with that mental toll. Also, I'm currently clashing with my mother over a crucial dietary point: is it actually permissible for her to consume small amounts of salt, or does she need to cut it out completely when kidney failure is involved?

My mom is dealing with kidney issues too. She basically has to cut out salt entirely. We don't add any salt to anything we cook at home anymore—not even a pinch. She also has to stay far away from things like canned soups, chips, or any processed snacks. She’s 67 now, and this whole kidney situation started about seven years ago. Since she also deals with blood clots in her leg, she ends up going in every couple of months for blood work and to see her hematologist at the hospital, where she gets her creatinine checked too. Her creatinine levels usually hover somewhere between 200 and 220, depending on the day. As for her creatinine clearance... we rarely get that tested; the last time was actually over a year ago. Most of her talks with the nephrologist happen over the phone lately because he retired from the hospital and moved into private practice. Honestly, things were much easier when he was still at the hospital, since she could go in for checkups way more often.

How old is your mom? What are her current creatinine and clearance numbers looking like? And do you know what caused the kidney problems in the first place? Where is she seeing her doctors? My mom had frequent blood clots, and it seems like they eventually affected her kidneys, so one of them doesn't work at all, and the other is damaged too. She’s on a permanent prescription for Coumadin.

My mom is 46, and it turns out she’s been dealing with kidney issues for five or six years without even realizing it because her doctor just brushed off her high blood pressure and other minor symptoms as nothing significant. It wasn't until this year that they actually ran the right tests and discovered cysts that have completely taken over one kidney, rendering it useless, while the other one is heavily damaged too. Now we're stuck waiting to find out how much longer she can hold out before she's forced onto dialysis. I've heard nothing but horror stories about how brutal dialysis is, and since I don't personally know anyone who has gone through it, everything I've gathered from others makes the whole situation look pretty grim.

Quick question—does someone actually have a right to medical transport regardless of where they’re staying?

It all depends on the distance involved. I suspect there isn't an issue up to 31 miles distance, but you really ought to verify that for yourselves.

Megan Carter69 said:I was wondering if someone is actually entitled to medical transport regardless of where they're living.

If we're talking about chronic dialysis, medical transport really ought to be available to anyone dealing with that.
You just have to sort out some paperwork, though I'm not entirely sure how the whole bureaucracy is laid out at the moment. You can find the specifics regarding the rules right here.
Of course, you'll definitely want to touch base with your primary care physician to iron out all the fine print.

Does anyone here have any experience regarding dialysis being used during sepsis? I’m looking for insight—feel free to DM me if that's easier. I guess I'm wondering when it actually makes sense to attempt dialysis and when it's just... futile. Specifically, does it get used in cases of septic shock, especially if the patient is unconscious and unable to communicate? My mother (who was 68) went through this, so I'm trying to make sense of it all. She wasn't conscious or able to talk, though, on her very last day, she actually managed to lift her hand when I visited her at the hospital. She wasn't even in the ICU, even though I've read everywhere that sepsis should be treated in intensive care. Her breathing was really labored because of the infection. Her CRP levels started dropping once she got the antibiotics; it went from an initial 400 down to 200. In my opinion, maybe she would still be here if they had started dialysis. On her final day, there was a blood clot in her catheter line, which was something she had never dealt with before. Also, her urine output was minimal because her kidneys were failing due to the sepsis. I honestly don't understand why they didn't just remove the urinary catheter once she developed the infection from it. From what I've read since, removing the catheter is such a basic step, and usually, a catheter doesn't lead to life-threatening sepsis in the first place. Not to mention, the sepsis shouldn't have happened at all. She was hospitalized the whole time, and they knew she had a UTI from the catheter, but they seemingly waited to start antibiotics because it was a Sunday—maybe they just weren't in a rush. All of this happened following a below-the-knee amputation, where the wound itself had actually healed fine. She woke up from general anesthesia, was communicating, eating a little bit, and could even sit up in bed. Then, suddenly, she developed sepsis, which I feel was due to inadequate care during a hospital strike.

Not exactly the answer I was looking for. I get it, people tend to protect their own when things go sideways. But honestly, I thought I’d at least get a response via DM. It doesn't really matter now, though—I actually saw a similar case discussed on another forum, and the diagnosis was identical. In that situation, they tried everything possible, though it was a younger woman who arrived already septic. She ended up in the ICU and had to undergo dialysis. Of course, she wasn't at a place like the Mayo Clinic, where they might just wash their hands of the whole mess and wait for the worst to happen just to clear a bed. Maybe that sounds harsh, but that's just how it feels. Anyway, I'm waiting to hear back from the Department since I filed a formal report. Truth and justice always prevail in the end.

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I spent two and a half years stuck on dialysis—just a constant cycle of it. Eventually, I finally got a kidney transplant. That lasted ten good years, but now? Well, the transplanted kidney is starting to fail, which means I’m right back where I started: facing dialysis again and staring down that long, grueling waiting list for a new organ. What can I even say about it? Dialysis isn't really "living"—it's just survival. It's endless waiting, constant thirst, and a level of patience I'm not sure I even possess anymore.

Hello. My husband (37) has lived with Type 1 diabetes for years. A year ago, his kidneys failed, so we opted for peritoneal dialysis so he could keep working. It isn't easy—for him or for any of us. Dealing with chronic illness is becoming an uphill battle. I’ve overextended myself, taking on everything from managing his treatment to every other daily task. Now, I feel less like a partner and more like a servant. I'm losing my strength and my patience. The hardest part to swallow is the realization that I won't have a man by my side anymore; I just have another child to care for. Does anyone have actual advice? Please don't just tell me to see a therapist. I need practical ways to endure this without losing my mind. Thanks.

Jamie Stewart said:Hey everyone, my mom is getting ready for dialysis. She’s heading in soon for those tests to see if her kidneys can still manage on their own before they pull the trigger on the machine... but obviously, we know dialysis is coming. We're all pretty stressed out; from what I've heard, people on dialysis don't have much time left. How do you guys deal with that reality? Also, one big question that's causing some friction between me and my mom: is she allowed to have even a little bit of salt, or does she have to cut it out entirely when kidney issues are involved?

It depends on which type of dialysis we're talking about. If it's hemodialysis, she needs to cut back on salt—not necessarily eliminate it completely—but she'll need to minimize fluid intake significantly. That means soups and broths count toward her liquid limit. Fresh fruits and vegetables are mostly off the table then. However, with peritoneal dialysis, things are much more flexible. Almost anything goes.

Hey everyone. My mom recently started peritoneal dialysis. The folks over at the Mayo Clinic mentioned there’s some kind of pouch or bag meant for the catheter so it isn't just dangling down to her knee all day. I’ve been scouring the web but haven't found a single thing. Does anyone here actually own one of these? Or maybe you know where I can grab one? Thanks!

coastalheron572 said:Hi everyone. My mother recently started peritoneal dialysis. The hospital staff mentioned there might be a pouch or bag for the catheter so it doesn't just hang down to her knee. I haven't been able to find anything online. Does anyone know what this is called? Or where I can buy one? Thanks.

My husband just tucks it under his waistband. It’s less noticeable that way—it's still a sensitive thing to carry around, after all.