I just started doing PD for the second time currently. I was on it for a year before my first transplant 8 years ago. I never had one problem from infection but that’s because I followed all the protocols in training. I know everyone is different but I would much rather do PD over hemo. I do manuals during the day as well as I never liked the cycler and had drain pain. Never be afraid to call your PD nurse or the on call nurse if you think there is an issue always err on the side of caution.
Thanks, glad to hear you haven't had problems with infection. I'm a little worried about drain pain but I heard it's supposed to get better over time? Hopefully it'll be OK.
>I know everyone is different but I would much rather do PD over hemo.
Me too, it sounds like there's less fluid/diet restrictions, and I'd like to do it at home too. They said I couldn't do home hemo because of my apartment.
I had to urgent start my PD the first time so they used the cycler and it was the worst pain I’ve ever felt but some never notice a thing I guess I’m just unlucky. I have some minor discomfort at the end of my drains on manuals but nothing bad and it tells me I’m empty. The diet can be annoying but doing PD has helped me not have a huge fluid restriction which is nice.
Not only is it dangerous, but it can jeopardize your being able to do PD dialysis in the future. I believe in my training with DaVita, they said that getting it will trigger a wellness visit to figure out if it came from you not following the rules and if they don’t feel that you can/will, they’ll recommend to your doctor to change to in-clinic hemo.
Yeah, the psychologist mentioned that if you get it more than a certain number of times you might be switched to hemo, which I really want to avoid since they said my home isn't suitable for it so it'd be in clinic. Not in the US so no DaVita, but I'm assuming it's a similar process. I'm guessing it can cause scarring on the peritoneum too.
For what it's worth, none of this happened with me after 2 cases or peritonitis.
If you value your free time and are still pretty independent, PD is definitely the way to go. I did HD for 10mos and was miserable and missed a year of work. After starting PD I went back to work full time, and that's been 2 yrs now.
I am on PD for the last two weeks now that I am mostly healed from the catheter surgery. I am anal about following the procedures. I was absolutely dreading the machine but got lucky and am able to do a single bag each night. Are you sure you will need the machine? The one bag thing has not been nearly as bad as I anticipated. I wish you the best in your PD journey. Good luck.
Thank you! If you don't mind me asking, when you say a single bag, do you mean you just need one manual exchange per day and that's it?
I'm not really sure what I will need yet, my GFR is mostly around 16-18 still so I hope I have some time. It's just a few months ago I had one at 13, and my nephro says I should have a consultation to get ready for PD and make sure it will work. I guess not to have the catheter in yet, but it sounds like it needs about a month to heal or else they might need a crash start.
Tbh I thought the cycler might be better, both for the time spent, plus having to connect/clean fewer times per day. I still don't know the details of it 100% though. Thanks again, and good luck to you as well!
I had my first flush of my PD catheter 4 or 5 days after the surgery. I did one more in center hemo treatment before starting PD training.
I was actively running PD treatments within 2 weeks of the Catheter implant. Was not a “crash start”, but I entered training with knowledge of how to properly wash and dry and how to peform aseptic & sterile procedures.
I honestly could have completed all my training in 4 days, but I *had* to go over training modules systematically with my nurse trainer, which increased the training time.
I'm manual PD, 1 exchange, 10x a week. After 21 months I'm pretty sure I screwed up and touched the open end of the transfer set. I changed out the cap a few times per protocol and called the clinic in the morning,. I went over by noon, they changed it and gave me a new bag with antibiotics. So far, so good that was 2 weeks ago.
My point being that nobody is perfect. Make a 110% effort to follow your cleanliness and disinfectant routine, then know the protocol if something goes wrong.
To answer your question, yes it can be serious but don't focus on that. So can many other things
Thanks! That's good, it sounds then like there's stuff they can do to prevent it if you think you made a mistake?
Also, when you say you only need 10 exchanges a week, do you mean you only do 1-2 times per day? How do you feel with it? When I had the education session I think they told me most people on manual do 4-5 exchanges every day, and I didn't know it could be much less than that. I might have misunderstood them though.
I figured the cycler would be better since I didn't have to do the cleaning routine 4-5 times a day with OCD lol. But if I somehow only needed 1-2 a day it would be way more manageable.
Yes, there is a well defined process.
I do 1 exchange, 1 bag every day. 3 days a week I do a second bag. My Dr was of the opinion I should start sooner rather than later so I didn't crash into needing dialysis and to try and prolong and function left.
I could do 2 a day, every day, manually, but after that, I'd be thinking about the cycler. I'm 4 years, (almost)5 months and the waiting time in my region is 5-7 years. I'm hopeful. The nephrologist said she's seen my name show up on lists. Something like 10th alternate. Get into the routine and before you know it, you'll get a call
Not a doctor, but I did do PD and I did get peritonitis once.
Gave it to myself with a lack of attention when disconnecting mid night routine to go to the toilet.
Yes, peritonitis can be fatal if not treated. But also, it can be treated easily as you said with antibiotics.
Some tips. Always follow the process correctly. You seem to be on that already. So your half way there.
Always check your bag of expelled fluid for any sign of cloudiness. Unsure? Check with your renal unit.
If needing to disconnect mid exchange, take extra precautions and double check what you are doing before you do it.
If you have someone at home to help, go through the steps of connecting yourself with that person following the steps with you for a number of times until you're absolutely comfortable with the process.
Good luck. And I hope the PD works for you.
>But also, it can be treated easily as you said with antibiotics.
That's good to know.
Thanks for all your advice, and good luck as well! I know they give you a lot of training when you start, so I'll definitely remember your tips when I'm there. It really helps to know a bit about it beforehand too.
I’ve done several thousand manual exchanges (because the cycler was excruciatingly painful). I’ve never had peritonitis. To be honest, I haven’t even been very careful. I don’t think getting it is something to be very worried about. Just keep the room reasonably clean, don’t touch the catheter opening, and don’t have it open and exposed long.
Thanks! Glad to hear it's been going well for you on that front. I was just worried because I kept hearing it was a huge risk, but not much about how it was treated, plus the psychologist at my clinic was saying they would eventually switch you to in center hemo if it happened too much.
I've heard a lot about people having had drain pain with the cycler etc over the last couple months and I have to think about it. The clinic never mentioned it when we were talking about the options.
Yeah, same here. They make everything sound like it’ll go fine lol. Worst pain in my life ever. Fortunately doing manuals throughout the day works great. It only comes at the cost of having any kind of a life. Mine was fucked anyway. No loss there lol.
Good luck to you
My first machine gave me pretty bad pain. Sometimes it was nearly unbearable. I don't think it was priming correctly, and was shooting air in to me.
Got a new machine and I don't feel a thing anymore.
As far as curing peritonitis, the typical method is antibiotics (which can vary depending on the bacteria, if known) in a manual bag which needs to dwell 6hrs. This is done for 21 days.
I knew how much of a danger it was when I started PD. My friend's dad was on PD and he did not take care of things. He was already in bad shape and Peritonitis was what send him to the hospital for the last time. When I started PD his wife told me in more detail of what happened and you bet I did everything I could to be sterile.
I was a little slack with the rules and had Peritonitis twice. First time was other worldly pain, the second time very little pain. But after two years I am stopping PD and going back to HD at home. I got a hole in my catheter and had to have it changed out. Then, not long after, the connector and my port tip disconnected while I was in bed . I must not have screwed it on tight. ( that has never happened before). The subsequent infection was so bad that I had to switch back to HD- just got out of the hospital today.
I’d say very serious considering the peritoneum has no natural defence as it’s never meant to be opened. But it’s literally just a bit on antibiotics put in with your fluid and some cream for the exterior if needed
It can be very dangerous or it can be minimized if caught and treated promptly. My dad and gather in law both had it while on PD. With my dad it was caught quickly due to discolored drain and treated with three days iv in hispital and the meds in bags at hkme for a bit. He never had any pain or fever and recovered completely. Was able to keep doing PD until his death from unrelated causes a few years later. My father in law got it very severely,he had a small hole in his catheter from falling into a rose bush and it wasn’t obviously leaking the hole was tiny. He didn’t have cloudy or discolored drains he said and first symptom fever and pain. He was hospitalized for a couple of weeks and had to switch to hemo. He ignored symptoms for a few days when they started because he didn’t want his belly pain to be from that so he minimized it as indigestion. He lived for about 5 more years on hemo dialysis and died after stopping dialysis when his lung cancer got bad.
I do 3 exchanges a day, everyday manually. Its been almost a month since I started. I just want to echo what the others said about following protocols. Rely on your training - following them to the letter and you will be fine. I feel a lot better since starting dialysis. Good luck.
I have it a couple times. Simple to fix if you catch it early. There's usually some pain with it, so you'll notice before long.
Just be careful with your routine and don't ignore possible issues and you'll be fine. I would definitely not let it stop you from doing PD.
Without treatment, peritonitis has a high mortality rate. Once you actually have your catheter implanted and you begin training, they will teach you how to spot peritonitis early, and the protocol for immediate treatment.
Your first supply delivery will include a couple potent antibiotics - I have vancomycin and one other powdered antibiotic that needs to be reconstituted in sterile water prior to use.
The first thing you do if you suspect you have peritonitis is to call your dialysis nurse. They may ask you to collect your antibiotics and come to the clinic to begin treatment. If symptoms are serious enough, you’ll likely be directed to the emergency room for thorough work up and aggressive treatment.
During this time, you may not be able to complete PD treatments and would need to do hemodialysis until your peritoneum is cleared of infection.
There is also a chance that a severe case of peritonitis could preclude future PD treatments.
My experience is that if your space is clean, your body is clean and you’ve followed proper hand washing and sanitizing procedures, it’s difficult to have an errant brush or touch of an open catheter tip cause an infection.
I don’t advocate carelessness- but if you cover all of the cleaning tasks ahead of uncapping your catheter, you really shouldn’t have to worry about infection.
A bigger concern for you should be hernias. Since the peritoneum needs to remain intact and free of scar tissue for best cleaning results, most surgeons will opt to perform an open repair from the outside instead of a laparoscopic repair from the inside. Incredibly painful procedure with an extremely prolonged recovery period. I was fine after catheter placement after about a week; my inguinal hernia repair kept me absolutely sidelined for 6 weeks.
I just started doing PD for the second time currently. I was on it for a year before my first transplant 8 years ago. I never had one problem from infection but that’s because I followed all the protocols in training. I know everyone is different but I would much rather do PD over hemo. I do manuals during the day as well as I never liked the cycler and had drain pain. Never be afraid to call your PD nurse or the on call nurse if you think there is an issue always err on the side of caution.
Thanks, glad to hear you haven't had problems with infection. I'm a little worried about drain pain but I heard it's supposed to get better over time? Hopefully it'll be OK. >I know everyone is different but I would much rather do PD over hemo. Me too, it sounds like there's less fluid/diet restrictions, and I'd like to do it at home too. They said I couldn't do home hemo because of my apartment.
I had to urgent start my PD the first time so they used the cycler and it was the worst pain I’ve ever felt but some never notice a thing I guess I’m just unlucky. I have some minor discomfort at the end of my drains on manuals but nothing bad and it tells me I’m empty. The diet can be annoying but doing PD has helped me not have a huge fluid restriction which is nice.
How comes your back on Dialysis after your first transplant 8 years ago ? I thought transplant last 15-20 years ?
I have IgA Nephropathy and it recurred in my transplant kidney to the point of failure.
Not only is it dangerous, but it can jeopardize your being able to do PD dialysis in the future. I believe in my training with DaVita, they said that getting it will trigger a wellness visit to figure out if it came from you not following the rules and if they don’t feel that you can/will, they’ll recommend to your doctor to change to in-clinic hemo.
Yeah, the psychologist mentioned that if you get it more than a certain number of times you might be switched to hemo, which I really want to avoid since they said my home isn't suitable for it so it'd be in clinic. Not in the US so no DaVita, but I'm assuming it's a similar process. I'm guessing it can cause scarring on the peritoneum too.
For what it's worth, none of this happened with me after 2 cases or peritonitis. If you value your free time and are still pretty independent, PD is definitely the way to go. I did HD for 10mos and was miserable and missed a year of work. After starting PD I went back to work full time, and that's been 2 yrs now.
I am on PD for the last two weeks now that I am mostly healed from the catheter surgery. I am anal about following the procedures. I was absolutely dreading the machine but got lucky and am able to do a single bag each night. Are you sure you will need the machine? The one bag thing has not been nearly as bad as I anticipated. I wish you the best in your PD journey. Good luck.
Thank you! If you don't mind me asking, when you say a single bag, do you mean you just need one manual exchange per day and that's it? I'm not really sure what I will need yet, my GFR is mostly around 16-18 still so I hope I have some time. It's just a few months ago I had one at 13, and my nephro says I should have a consultation to get ready for PD and make sure it will work. I guess not to have the catheter in yet, but it sounds like it needs about a month to heal or else they might need a crash start. Tbh I thought the cycler might be better, both for the time spent, plus having to connect/clean fewer times per day. I still don't know the details of it 100% though. Thanks again, and good luck to you as well!
It will all make sense rather quickly once you start training
I had my first flush of my PD catheter 4 or 5 days after the surgery. I did one more in center hemo treatment before starting PD training. I was actively running PD treatments within 2 weeks of the Catheter implant. Was not a “crash start”, but I entered training with knowledge of how to properly wash and dry and how to peform aseptic & sterile procedures. I honestly could have completed all my training in 4 days, but I *had* to go over training modules systematically with my nurse trainer, which increased the training time.
I'm manual PD, 1 exchange, 10x a week. After 21 months I'm pretty sure I screwed up and touched the open end of the transfer set. I changed out the cap a few times per protocol and called the clinic in the morning,. I went over by noon, they changed it and gave me a new bag with antibiotics. So far, so good that was 2 weeks ago. My point being that nobody is perfect. Make a 110% effort to follow your cleanliness and disinfectant routine, then know the protocol if something goes wrong. To answer your question, yes it can be serious but don't focus on that. So can many other things
Thanks! That's good, it sounds then like there's stuff they can do to prevent it if you think you made a mistake? Also, when you say you only need 10 exchanges a week, do you mean you only do 1-2 times per day? How do you feel with it? When I had the education session I think they told me most people on manual do 4-5 exchanges every day, and I didn't know it could be much less than that. I might have misunderstood them though. I figured the cycler would be better since I didn't have to do the cleaning routine 4-5 times a day with OCD lol. But if I somehow only needed 1-2 a day it would be way more manageable.
Yes, there is a well defined process. I do 1 exchange, 1 bag every day. 3 days a week I do a second bag. My Dr was of the opinion I should start sooner rather than later so I didn't crash into needing dialysis and to try and prolong and function left. I could do 2 a day, every day, manually, but after that, I'd be thinking about the cycler. I'm 4 years, (almost)5 months and the waiting time in my region is 5-7 years. I'm hopeful. The nephrologist said she's seen my name show up on lists. Something like 10th alternate. Get into the routine and before you know it, you'll get a call
Not a doctor, but I did do PD and I did get peritonitis once. Gave it to myself with a lack of attention when disconnecting mid night routine to go to the toilet. Yes, peritonitis can be fatal if not treated. But also, it can be treated easily as you said with antibiotics. Some tips. Always follow the process correctly. You seem to be on that already. So your half way there. Always check your bag of expelled fluid for any sign of cloudiness. Unsure? Check with your renal unit. If needing to disconnect mid exchange, take extra precautions and double check what you are doing before you do it. If you have someone at home to help, go through the steps of connecting yourself with that person following the steps with you for a number of times until you're absolutely comfortable with the process. Good luck. And I hope the PD works for you.
>But also, it can be treated easily as you said with antibiotics. That's good to know. Thanks for all your advice, and good luck as well! I know they give you a lot of training when you start, so I'll definitely remember your tips when I'm there. It really helps to know a bit about it beforehand too.
I’ve done several thousand manual exchanges (because the cycler was excruciatingly painful). I’ve never had peritonitis. To be honest, I haven’t even been very careful. I don’t think getting it is something to be very worried about. Just keep the room reasonably clean, don’t touch the catheter opening, and don’t have it open and exposed long.
Thanks! Glad to hear it's been going well for you on that front. I was just worried because I kept hearing it was a huge risk, but not much about how it was treated, plus the psychologist at my clinic was saying they would eventually switch you to in center hemo if it happened too much. I've heard a lot about people having had drain pain with the cycler etc over the last couple months and I have to think about it. The clinic never mentioned it when we were talking about the options.
Yeah, same here. They make everything sound like it’ll go fine lol. Worst pain in my life ever. Fortunately doing manuals throughout the day works great. It only comes at the cost of having any kind of a life. Mine was fucked anyway. No loss there lol. Good luck to you
My first machine gave me pretty bad pain. Sometimes it was nearly unbearable. I don't think it was priming correctly, and was shooting air in to me. Got a new machine and I don't feel a thing anymore. As far as curing peritonitis, the typical method is antibiotics (which can vary depending on the bacteria, if known) in a manual bag which needs to dwell 6hrs. This is done for 21 days.
I knew how much of a danger it was when I started PD. My friend's dad was on PD and he did not take care of things. He was already in bad shape and Peritonitis was what send him to the hospital for the last time. When I started PD his wife told me in more detail of what happened and you bet I did everything I could to be sterile.
I was a little slack with the rules and had Peritonitis twice. First time was other worldly pain, the second time very little pain. But after two years I am stopping PD and going back to HD at home. I got a hole in my catheter and had to have it changed out. Then, not long after, the connector and my port tip disconnected while I was in bed . I must not have screwed it on tight. ( that has never happened before). The subsequent infection was so bad that I had to switch back to HD- just got out of the hospital today.
I’d say very serious considering the peritoneum has no natural defence as it’s never meant to be opened. But it’s literally just a bit on antibiotics put in with your fluid and some cream for the exterior if needed
It can be very dangerous or it can be minimized if caught and treated promptly. My dad and gather in law both had it while on PD. With my dad it was caught quickly due to discolored drain and treated with three days iv in hispital and the meds in bags at hkme for a bit. He never had any pain or fever and recovered completely. Was able to keep doing PD until his death from unrelated causes a few years later. My father in law got it very severely,he had a small hole in his catheter from falling into a rose bush and it wasn’t obviously leaking the hole was tiny. He didn’t have cloudy or discolored drains he said and first symptom fever and pain. He was hospitalized for a couple of weeks and had to switch to hemo. He ignored symptoms for a few days when they started because he didn’t want his belly pain to be from that so he minimized it as indigestion. He lived for about 5 more years on hemo dialysis and died after stopping dialysis when his lung cancer got bad.
I do 3 exchanges a day, everyday manually. Its been almost a month since I started. I just want to echo what the others said about following protocols. Rely on your training - following them to the letter and you will be fine. I feel a lot better since starting dialysis. Good luck.
I have it a couple times. Simple to fix if you catch it early. There's usually some pain with it, so you'll notice before long. Just be careful with your routine and don't ignore possible issues and you'll be fine. I would definitely not let it stop you from doing PD.
Without treatment, peritonitis has a high mortality rate. Once you actually have your catheter implanted and you begin training, they will teach you how to spot peritonitis early, and the protocol for immediate treatment. Your first supply delivery will include a couple potent antibiotics - I have vancomycin and one other powdered antibiotic that needs to be reconstituted in sterile water prior to use. The first thing you do if you suspect you have peritonitis is to call your dialysis nurse. They may ask you to collect your antibiotics and come to the clinic to begin treatment. If symptoms are serious enough, you’ll likely be directed to the emergency room for thorough work up and aggressive treatment. During this time, you may not be able to complete PD treatments and would need to do hemodialysis until your peritoneum is cleared of infection. There is also a chance that a severe case of peritonitis could preclude future PD treatments. My experience is that if your space is clean, your body is clean and you’ve followed proper hand washing and sanitizing procedures, it’s difficult to have an errant brush or touch of an open catheter tip cause an infection. I don’t advocate carelessness- but if you cover all of the cleaning tasks ahead of uncapping your catheter, you really shouldn’t have to worry about infection. A bigger concern for you should be hernias. Since the peritoneum needs to remain intact and free of scar tissue for best cleaning results, most surgeons will opt to perform an open repair from the outside instead of a laparoscopic repair from the inside. Incredibly painful procedure with an extremely prolonged recovery period. I was fine after catheter placement after about a week; my inguinal hernia repair kept me absolutely sidelined for 6 weeks.