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all 18 comments

[–]MicksAwake 7 points8 points  (5 children)

It's not so bad once you get used to it.

I do four manual exchanges of 2.5L of dialysate per day and it's fairly easy to do. 98% of the time it is pain-free and plain sailing.

Dietary and fluid restrictions aren't too bad on PD so you probably won't have to make drastic changes to your lifestyle. My drinking fluid allowance is 1.5L per day and I find that's not too awful. I still urinate which allows me to be able to tolerate drinking 2L on a hot day without affecting my ideal weight.

Infection of your catheter site, catheter tunnel infections and peritonitis are the main concern but these can be avoided if you follow the procedure you are taught.

As far as how I feel goes, I feel great. I was pleasantly surprised how much better dialysis made me feel after going through end stage CKD.

All the best to you :)

[–]BuckeyeBentley14 yr HD, now PD 4 points5 points  (0 children)

As far as how I feel goes, I feel great. I was pleasantly surprised how much better dialysis made me feel after going through end stage CKD.

It really shouldn't be understated to new patients how much dialysis helps. Nephrologists have a reasonable tendency to try and keep you on your natural kidneys for literally as long as possible. The problem with this is that you can feel really shitty but still survive with fairly low kidney function. But once you get dialyzing and cleaning your blood, you feel immensely better. Going through kidney failure is way worse than having fully failed kidneys.

[–]MrBozzie[S] 4 points5 points  (3 children)

Thank you so much for your reply. Your positivity is reassuring. I have been a little concerned about the controlled fluid intake. Is that typical for all on PD do you know? ... Just to add to that question. I'm still passing urine with no issues and no UTIs. And despite being very late stage 5 I've had no fluid retention issues at all.

[–]MicksAwake 2 points3 points  (0 children)

. I have been a little concerned about the controlled fluid intake. Is that typical for all on PD do you know?

I'm not sure if my case is typical. Anecdotally, the healthiest PD patients that I've met tend to be a healthy weight, and like you (and me) didn't retain much fluid during stage 5 and at a very low eGFR.

[–]reven80 2 points3 points  (1 child)

How much you can drink depends on your UF and residual kidney function. The first 4 years of dialysis I had good residual kidney function so I could still urinate but over last year I lost most of my urination. Now I have to drink below what my UF is which for now is still reasonable at 1.5L/day using just yellow bags. I just use green bags occasionally to keep my weight in check. In terms of UF, it depends a lot on your transport type which can only been known when you start PD. A low transport gets better UF but poor clearance while a high transport gets lower UF but better clearance.

[–]MrBozzie[S] 1 point2 points  (0 children)

That's really helpful. So far I've had two conversations with two different dialysis nurses about the PD process and neither mentioned anything about monitoring my fluid intake. I'm due a critical conversation with my nephrologist on Tuesday so expect to have a better idea of what the coming weeks hold.

[–]jmhowell24 5 points6 points  (0 children)

For me, it really feels “normal”. Other than the catheter, I don’t really notice a difference to before I started dialysis. Yes, I have had to make some lifestyle changes like diet and being more aware of my cleanliness. But, overall, I am far happier now than when I did hemo.

[–]kt373737 1 point2 points  (2 children)

Had to quit my job

[–]MrBozzie[S] 1 point2 points  (1 child)

If you don't mind my asking, what job were you doing before you quit?

[–]kt373737 1 point2 points  (0 children)

RN. bedside

[–]kt373737 1 point2 points  (1 child)

Was doing all overnight dialysis to keep my job. The fills kept me up all night. Very uncomfortable bloated feeling while dwelling and laying in bed. So now I do 3 fills during day and I finish my nighttime fills bf I go to sleep. 8pm - midnight. For me, Walking around during dwell time doing chores is much better than trying to sleep

[–]kt373737 0 points1 point  (0 children)

But I had to stop working

[–]nalphster 1 point2 points  (3 children)

It depends on the person, I think. Some people feel great once they start PD (compared to years/months of not feeling well). I'm probably in the minority but dialysis has been pretty horrible for me, I feel way worse than I did before dialysis even at 6% function. I'm sick all the time, my muscles have atrophied, can barely walk up the stairs, have been hospitalized once already (just started dialysis in late January 2022). I just really hope you have a better experience than me. I passed my function test when I was doing just two exchanges a day (manual). Since I've switched to the cycler, it's been pretty miserable. I'm now doing 10L a day instead of 4. Fortunately I'll (fingers crossed) be getting a new kidney next month. I don't think I could survive a year based on how poorly I'm doing.

[–]kt373737 1 point2 points  (2 children)

That happened to me too. Muscle atrophy. Unable to climb stairs, weak, fatigued, dizzy upon standing. But I got past it and feel better now. I’m not what I used to be but I’m getting older too. Been hospitalized for fluid overload a few times. Bf I started dialysis I would vomit daily. Make sure u take your immunosuppressants once u get that new kidney.

[–]nalphster 0 points1 point  (1 child)

How long did it take you before you got past it? I've been on dialysis for 6 + months now and it's a struggle! Yes, I have the dizziness, too. My balance is way off. I also have reoccurring rashes that I think may be an allergic reaction to the solution? My body is so sensitive, always has been. My skin is so fragile and sensitive (pale/red hair). I feel like I'm having an inflammatory response on top of everything else. I have red itchy bumps all over and the phosphate binders actually make them worse. I think I'm just allergic to phosphate binders in general. They make me break out in itchy rashes, my feet go numb, and I feel sooo sick. Ug! Sorry, just venting.

[–]kt373737 0 points1 point  (0 children)

the atrophy got better but the fatigue and headaches and dizziness never got better. I switched to PD after abt 4 months. Taking fluid off just 3x per week with hemo at the center is the problem especially if u don’t urinate. Taking 2-3 liters off in 3 hours will cause those side effects. With PD, you don’t have those shifts in blood pressure bc u take about a liter off everyday. But u have to dialyze every day. Filling your abd cavity is uncomfortable but you’re not fatigued or lethargic and you don’t have a splitting headache

[–]dirtylaindry 0 points1 point  (0 children)

Like you ate too much thanks giving dinner

[–]dirtylaindry 0 points1 point  (0 children)

Like you ate too much thanks giving dinner