Been busy living life safter transplant and working unfortunately so not a lot of time with UA-cam content development. Will try to develop more content as time allows from work. Thank you for watching the videos and hopefully they have been helpful in your person #KidneyJourneys :)
I don't believe, I will ever learn how to do manual pd. It seen so complicated! I been on dialysis for a year, and when I started off, I used the pd cycler. do u have a cycler?
Its actually not that hard. about the same procedures as using the cycler. Most clinics will start training with the manuals before the cycler. It takes time for the cycler to arrive once ordered and also important to know manuals in the event there are problems with the cycler not working for some reason that you are still able to dialyze.
@@KidneyJourneys i just started PD a few days ago and your right if the power goes out you definitely need to know how to do it at some point I will have the machine I have my order coming in tomorrow my PD Nurse has been touching bases with me what I would like to know is the fullness of the stomach also GOING be felt that way when you do it on the machine im constantly full during the day I do mines 4 times A-day and there like 30 minutes per cycle on the during manual
@@KidneyJourneys CAN YOU ALSO GET THE MANUALS BAGS WITH THE LARGER ONES FOR THE CYCLER? ARE THERE ANY MEDICARE LIMITATIONS. WHAT DOES MEDICARE COVER? HAND SANTIZER, BAND AIDS, TAPES. THAT WOULD BE A NICE VIDEO FOR NEWBIES.
@@dialysisdiva7430 I AM VERY CONFUSE, YOU DO 4 MANUEL EXCHANGES A DAY. I THINK THAT IS NORMAL, THE DWELL TIME ( TIME YOU LEAVE THE FLUID IN YOUR PERITONEAL IS 30 MINUTES? ) THEN YOU DRAIN. HOW MANY HOUR LATER DO YOU START THE NEXT EXCHANGE? OR DID YOU MEAN THE CYCLE IS 30 MINUTES WHEN ON THE CYCLER AT NIGHT. WHEN ON THE CYCLER YOU CAN DO AS MANY EXCHANGES AS NECESSARY.
@@ellenlee1 typically, your clinic will enable an ordering profile when you are are one of their patients with the supplier that would setup what you are able to order or not from that supplier. I was able to order both manuals and the larger solution bags for cyclers. Good to get trained and do manuals once in a while to stay fresh on protocols/procedures in case cycler malfunctions or there is now power.
Yes, I have had those issues with both home dialysis modalities and also in center hemo modality. They are not limited to just home modalities if that is what you are asking. We also have great support groups you can join on ways they typically treat those issues or ways that patients manage them when they occur from time to time on dialysis. The Facebook clubs are listed in the descrition of this video if you wish to join and learn more. Hope that helps and answers your question. :) Thanks for watching and asking.
Negative UF means that you did not drain all of your fill volume out during the drain phase. Therefore you retain part of the fill volume. Too much retained over time, may increase your BP or weight which may not be ideal for the individual.
IF YOU DO A PARTIAL FILL DO YOU HAVE TO WEIGHT THE AMOUNT REMAINING IN THE FILL BAG SO YOU KNOW THE WEIGHT OF THE FLIUD YOU PUT INTO YOU? SO LATER WHEN YOU DRAIN THE FLIUD YOU KNOW THE WEIGHT PLUS THE UF THAT DRAIN OUT. YOU ARE NOT USING THE WHOLE 2 LITERS BAG?????
There is a spring scale I was trained to use with manuals that the manual bags hang on. You can use that after to measure your drained volume output or any amount of unfilled PD solution if your prescription calls for less. They also cover this during clinical training. Excellent question thank you for asking.
Vacuum, clear of clutter, wipe down machine and connection surface areas and your cycler with simple bleach / water mixture are typical. Your clinic may have some additional steps they will provide during your PD training with them.
Not sure if you able experienced or enquired more about ....but what happens if this process is not done for let's say 12-14 hours on occasional day due to travel/or some other emergency, once patient has started doing PD. I am asking for someone to whom doctors have recommended this but they have not started it yet.
My apologies for not responding quicker. Just seeing your message now. I am not currently on YT everyday. In general, because most PD patients do treatments daily, the negative effects tends to take longer or be symptomatic and affect the individual quicker to someone doing dialysis 3x a week. Normal kidneys work 24/7 and there is not replacement for that besides a deceased or living donor kidneys currently. With that said, it's not recommended to skip and in the rare cases like you describe, PD nurses and nephrologist often may recommend the dialysis patient to do their next treatment when possible or try to do at least manual exchanges (if possible) while traveling. They will teach you the procedures during the training at the clinic. Some long haul international flights, the clinical team may be ok if they skip treatment until after landing in hotel or some other more sterile environment to do their CAPD or CCPD treatments. Hope that helps
I see PD all day when I was on it, but maybe you meant how many times a day you do PD. If so, that would depend on individual health what residual kidney function you have, health status, labs and other factors in derterming that with your PD Nurse and Nephrologist.
Some folks with higher residual funciton will do fewer exchanges per day compared to a person with lower residual kidney function who usually would need more dialysis and cleaning. Somewhere b/t 3-7 exchanges a day. Rarely, do folks only do 1-2 exchanges per day. Thank you for watching the vlog and also for your awesome question.
Thank you for your question. Under usual circumstances, folks on dialysis have reduced urine output volume in addition to reduced ability to remove wastes, toxins as well. Therefore, typically you would generate some UF in the drain with the effulent of each exchange on CAPD and CCPD, but sometimes, there may be less (or zero UF) on one individual exchange but still more in other exchanges to generate total UF for the day. Exception to this would be if you still have high urine output volume and not drinking enough fluids remain to generate UF.
@@Shilpachaudhary1993 To my knowledge there are no studies on survival rates specificallly no CAPD. While there are some studies of a limited population on overall survival rates for folks on dialysis, IMO, that study was limited and dated where a lot of folks have lived long past what was cited in that study these days. Dialysis of any modality is a life sustaining treatment option, without it, those with kidney failure will live or not survive in their own timing which varies depending on their individual health situation. it''s better to get these estimate from your own nephrologist / doctors who have your full medical history and current status and have assessed your individual situation.
I know, it's been a busy crazy time with pandemic and life adjustments. Wroking on some new video at the moments. Takes a lot of time to work on them and edit. My apologies. Been working on a lot of real time support initiaves on other platforms. Do you have any particular questions or things you are looking to learn about?
@@KidneyJourneys was wondering maybe an update where you are now? I've been through everything - PD for ten years and now hemo. Had a transplant as well. Just interesting to see how people are going through the same things yet still can be different. Your vids are very informative for people who don't know much about dialysis and from first hand experience.
@@flippensweet24 Thanks for the compliment and feedback. Yes, the updated status pre vs post transplant is one of the videso to come out. There are so many different people with different health histories that develop kidney failure and some folks also have different sides effects compared to others as well post transplant. There is a lot of difference for sure. Be happy to share my own journey.
@@KidneyJourneys I just started this journey about a month ago , currently on in center dialysis and struggling to adjust to this new reality, watching your videos has given me a lot of comforting , would love to hear an update on your personal situation , thanks for sharing
You guys are strong heroes
We are mere mortals choosing to live and making the best of technology, medical science available.
Thanks for the info.
You bet! Thanks for watching the videos
Why haven't you posted anything lately. Hopefully everything is fine. Great video
Been busy living life safter transplant and working unfortunately so not a lot of time with UA-cam content development. Will try to develop more content as time allows from work. Thank you for watching the videos and hopefully they have been helpful in your person #KidneyJourneys :)
I don't believe, I will ever learn how to do manual pd. It seen so complicated! I been on dialysis for a year, and when I started off, I used the pd cycler. do u have a cycler?
Its actually not that hard. about the same procedures as using the cycler. Most clinics will start training with the manuals before the cycler. It takes time for the cycler to arrive once ordered and also important to know manuals in the event there are problems with the cycler not working for some reason that you are still able to dialyze.
@@KidneyJourneys i just started PD a few days ago and your right if the power goes out you definitely need to know how to do it at some point I will have the machine I have my order coming in tomorrow my PD Nurse has been touching bases with me what I would like to know is the fullness of the stomach also GOING be felt that way when you do it on the machine im constantly full during the day I do mines 4 times A-day and there like 30 minutes per cycle on the during manual
@@KidneyJourneys CAN YOU ALSO GET THE MANUALS BAGS WITH THE LARGER ONES FOR THE CYCLER? ARE THERE ANY MEDICARE LIMITATIONS. WHAT DOES MEDICARE COVER? HAND SANTIZER, BAND AIDS, TAPES. THAT WOULD BE A NICE VIDEO FOR NEWBIES.
@@dialysisdiva7430 I AM VERY CONFUSE, YOU DO 4 MANUEL EXCHANGES A DAY. I THINK THAT IS NORMAL, THE DWELL TIME ( TIME YOU LEAVE THE FLUID IN YOUR PERITONEAL IS 30 MINUTES? ) THEN YOU DRAIN. HOW MANY HOUR LATER DO YOU START THE NEXT EXCHANGE? OR DID YOU MEAN THE CYCLE IS 30 MINUTES WHEN ON THE CYCLER AT NIGHT. WHEN ON THE CYCLER YOU CAN DO AS MANY EXCHANGES AS NECESSARY.
@@ellenlee1 typically, your clinic will enable an ordering profile when you are are one of their patients with the supplier that would setup what you are able to order or not from that supplier. I was able to order both manuals and the larger solution bags for cyclers. Good to get trained and do manuals once in a while to stay fresh on protocols/procedures in case cycler malfunctions or there is now power.
Hello,
Have you experienced any negative affects from using your at home dyalsis, such as abdominal pain, digestive issues or infections?
Yes, I have had those issues with both home dialysis modalities and also in center hemo modality. They are not limited to just home modalities if that is what you are asking. We also have great support groups you can join on ways they typically treat those issues or ways that patients manage them when they occur from time to time on dialysis. The Facebook clubs are listed in the descrition of this video if you wish to join and learn more. Hope that helps and answers your question. :) Thanks for watching and asking.
thank u for sharing your videos!
My pleasure! Thank you for watching them. My apologies for not seeing your comment earlier.
How many times a day
How long ahve you been in dyalisis
I was on dialysis and have done In center, PD and Home Hemo for over 5 1/2 years prior to my deceased donor transplant back on Dec, 2019.
What happene.if its negative Uf
Negative UF means that you did not drain all of your fill volume out during the drain phase. Therefore you retain part of the fill volume.
Too much retained over time, may increase your BP or weight which may not be ideal for the individual.
question. what if less 2000 of drain what will happen? im so worried because my fahter just have 1.7 drain only 😔
IF YOU DO A PARTIAL FILL DO YOU HAVE TO WEIGHT THE AMOUNT REMAINING IN THE FILL BAG SO YOU KNOW THE WEIGHT OF THE FLIUD YOU PUT INTO YOU? SO LATER WHEN YOU DRAIN THE FLIUD YOU KNOW THE WEIGHT PLUS THE UF THAT DRAIN OUT. YOU ARE NOT USING THE WHOLE 2 LITERS BAG?????
There is a spring scale I was trained to use with manuals that the manual bags hang on. You can use that after to measure your drained volume output or any amount of unfilled PD solution if your prescription calls for less. They also cover this during clinical training. Excellent question thank you for asking.
What needs to be done to clean and sanitize the room to perform this dialysis or does the room need to be just dust free?
Vacuum, clear of clutter, wipe down machine and connection surface areas and your cycler with simple bleach / water mixture are typical. Your clinic may have some additional steps they will provide during your PD training with them.
Not sure if you able experienced or enquired more about ....but what happens if this process is not done for let's say 12-14 hours on occasional day due to travel/or some other emergency, once patient has started doing PD. I am asking for someone to whom doctors have recommended this but they have not started it yet.
My apologies for not responding quicker. Just seeing your message now. I am not currently on YT everyday. In general, because most PD patients do treatments daily, the negative effects tends to take longer or be symptomatic and affect the individual quicker to someone doing dialysis 3x a week. Normal kidneys work 24/7 and there is not replacement for that besides a deceased or living donor kidneys currently. With that said, it's not recommended to skip and in the rare cases like you describe, PD nurses and nephrologist often may recommend the dialysis patient to do their next treatment when possible or try to do at least manual exchanges (if possible) while traveling. They will teach you the procedures during the training at the clinic. Some long haul international flights, the clinical team may be ok if they skip treatment until after landing in hotel or some other more sterile environment to do their CAPD or CCPD treatments. Hope that helps
How many times a day you do see a PD dialysis
I see PD all day when I was on it, but maybe you meant how many times a day you do PD. If so, that would depend on individual health what residual kidney function you have, health status, labs and other factors in derterming that with your PD Nurse and Nephrologist.
Some folks with higher residual funciton will do fewer exchanges per day compared to a person with lower residual kidney function who usually would need more dialysis and cleaning. Somewhere b/t 3-7 exchanges a day. Rarely, do folks only do 1-2 exchanges per day. Thank you for watching the vlog and also for your awesome question.
Is it necessary to drain extra fluid while capd
Thank you for your question. Under usual circumstances, folks on dialysis have reduced urine output volume in addition to reduced ability to remove wastes, toxins as well. Therefore, typically you would generate some UF in the drain with the effulent of each exchange on CAPD and CCPD, but sometimes, there may be less (or zero UF) on one individual exchange but still more in other exchanges to generate total UF for the day. Exception to this would be if you still have high urine output volume and not drinking enough fluids remain to generate UF.
You may also want to learen about UF vs. Total UF via this video here, if you have not watched it already ua-cam.com/video/lEa5mxaVJmo/v-deo.html
What is the average rate of survival in CAPD
@@Shilpachaudhary1993 To my knowledge there are no studies on survival rates specificallly no CAPD. While there are some studies of a limited population on overall survival rates for folks on dialysis, IMO, that study was limited and dated where a lot of folks have lived long past what was cited in that study these days. Dialysis of any modality is a life sustaining treatment option, without it, those with kidney failure will live or not survive in their own timing which varies depending on their individual health situation. it''s better to get these estimate from your own nephrologist / doctors who have your full medical history and current status and have assessed your individual situation.
Hello, Kyle! Great Video!
Glad you liked it!
Very informative video, thank you.
You stopped making videos?
I know, it's been a busy crazy time with pandemic and life adjustments. Wroking on some new video at the moments. Takes a lot of time to work on them and edit. My apologies. Been working on a lot of real time support initiaves on other platforms. Do you have any particular questions or things you are looking to learn about?
@@KidneyJourneys was wondering maybe an update where you are now? I've been through everything - PD for ten years and now hemo. Had a transplant as well. Just interesting to see how people are going through the same things yet still can be different. Your vids are very informative for people who don't know much about dialysis and from first hand experience.
@@flippensweet24 Thanks for the compliment and feedback. Yes, the updated status pre vs post transplant is one of the videso to come out. There are so many different people with different health histories that develop kidney failure and some folks also have different sides effects compared to others as well post transplant. There is a lot of difference for sure. Be happy to share my own journey.
@@KidneyJourneys I just started this journey about a month ago , currently on in center dialysis and struggling to adjust to this new reality, watching your videos has given me a lot of comforting , would love to hear an update on your personal situation , thanks for sharing