Dialysis at home for me was a nightmare ... There was no escape ..machines everywhere ...having to set up machine every night .mchange bags ..keep everything spotlessly clean and worrying if machine would breakdown or having a power cut during my sessions at night ... The worst for me was the ordering and delivery of all the equipment every so often and keeping an eye on what to order...being ill ... Tired ..confused thru lack of sleep and worry made everything so hard and feeling cut off from everyone was hard ..I lived myself and the only outside contact was very limited ... I wasn't told there was dialysis in the evenings adls if I wasni would have started right away in the hospital ... It wasn't until my work was being affected due to the problems I was having with dialysis I found out ... I was so angry I wasn't given the option ... Any way I start at hospital after about six months and found new friends that were going through what I was and it was great to talk to people with CKD ... Not having to set up machines and clean and look after myself was a lot better and having my flat back to normal I was given back a place I could relax in and separate things from my bad health and illness... I would always recommend having dialysis at hospital and nurses always there to help and advise and it takes the responsibility of you when you feel so rough now everyone is different I am only talking about my experience ... Nothing is easy there are good points and bad doing dialysis at home or at the hospital ..you have to be selfish and think what's best for you as you will be the one suffering and needing help ... X
Thank you for this video 😇 Your words put me at ease with my decision to do PD .. Really looking forward to feeling better .. 🤞🏽 .. I love your still doing your passion with violin lessons to gives me a smile inside to know I’ll be back doing my photography and videos again soon 🙌🏽😎
I have to go through the PD nightmare what end me on ICU for 10 days due to infection, and in my experience I prefer the hemo in the center you do your time there and you don’t have to worry about being 8 hours connected to a machine
I have been on hemo since November 2022, I had my PD catheter placed in February this year. Due to life changing events, I have not been able use PD yet. I hope I can start soon. Hemo is definitely a challenge for me, as the 4 hours in a hemo farm is unbearable at times. Best of luck
I'm sorry to hear that things have been so hard for you. And that Hemo hasn't been a better experience. I'm hoping that when you are able to do PD that it will make things a little easier. Thanks for your comment!
Peritonial dialysis is manageable. Just stick to your schedule. If you use a cycler, do it in the evening say 8pm, and by 6am you're done not unless you need to do a Stat Drain due to less output than expected. You can sleep and be done with it in the morning then you can go to work, etc. If your doctor ask you to do a "Dayfill", do it at noon and you're done, then continue what you're doing until it's time to do your next evening cycle. Peritonial Dialysis can be easily done alone as long as you're able but much better with a partner. Better than Hemodialysis where you sit down in the uncomfortable dialysis chair for 4 boring hours plus pain in your tailbone. Peritonial Dialysis is much preferred if you have a machine because after setup, all you have to do is sleep over it and you're done.
No one talks about drain pain for some of us. I’m so grateful you’re feeling good with PD. I didn’t know it was a possibility until after they tried to drain me before filling me to flush my catheter. I’m thinking of both options at this point
Im going to give u my personal experience. The nephrologist told me that my moms Pd at home would be a piece of cake 🎂- that i would just need to connect her at night for 8 hrs , 7 days a week. So i trained & in the middle of training it felt like it was too much responsibility. Like me ordering my moms supplies, going once a month to get her blood drawn, going every 3 months to drop off moms ( liquid) that is inside drain bag. Then doing manual once a week which fir mom its 4 cycles meaning 8 hours stuck to a ivy pole. It was ridiculous so we are beyond happy shes in hemo she goes 3 x a week mon, wed & frid 8-12 . We finally feel normal oh & almost forgot to mention that the dialysate bags weight alot plus i had to use our 3 rd bedroom as a supply room. But im sure it works for others . 😊
Thanks for sharing your experience with PD and Hemo. I'm so happy you found something that works for both you and your Mother. I think it's important to hear both sides so that others can make the best decision on what will work for them. Thanks again for sharing.
So far I’ve only had the flushing with the PD but it was incredibly painful for me. Some people say it might get better later on. One says it could be due to the surgery being just last week. Someone else says that drain pain will become my new normal and it’ll be there but I’ll get used to always being in pain. I’m thinking of changing to hemo at home
I am CKD4 and I have met with the dialysis nurse at our local hospital. It's so hard to accept this is happening. I wanted to ask, is transplant something you will consider?
It is hard to accept! And there are so many layers to the different emotions you feel. It takes time to work through them all. Thanks for your comment. And yes, I'm on the transplant list.
I have been very careful with my diet and exercise, so the cycler rarely wakes me with warnings. Otherwise it's fairly quiet. I wake up from time to time during a drain, which can uncomfortable, but I usually fall right back asleep.
Dialysis at home for me was a nightmare ... There was no escape ..machines everywhere ...having to set up machine every night .mchange bags ..keep everything spotlessly clean and worrying if machine would breakdown or having a power cut during my sessions at night ... The worst for me was the ordering and delivery of all the equipment every so often and keeping an eye on what to order...being ill ... Tired ..confused thru lack of sleep and worry made everything so hard and feeling cut off from everyone was hard ..I lived myself and the only outside contact was very limited ... I wasn't told there was dialysis in the evenings adls if I wasni would have started right away in the hospital ... It wasn't until my work was being affected due to the problems I was having with dialysis I found out ... I was so angry I wasn't given the option ... Any way I start at hospital after about six months and found new friends that were going through what I was and it was great to talk to people with CKD ... Not having to set up machines and clean and look after myself was a lot better and having my flat back to normal I was given back a place I could relax in and separate things from my bad health and illness... I would always recommend having dialysis at hospital and nurses always there to help and advise and it takes the responsibility of you when you feel so rough now everyone is different I am only talking about my experience ... Nothing is easy there are good points and bad doing dialysis at home or at the hospital ..you have to be selfish and think what's best for you as you will be the one suffering and needing help ... X
Thank you for sharing your experience. I think it's important to see different perspectives so people can make the best choices for themselves.
Thank you for this video 😇 Your words put me at ease with my decision to do PD .. Really looking forward to feeling better .. 🤞🏽 .. I love your still doing your passion with violin lessons to gives me a smile inside to know I’ll be back doing my photography and videos again soon 🙌🏽😎
I have to go through the PD nightmare what end me on ICU for 10 days due to infection, and in my experience I prefer the hemo in the center you do your time there and you don’t have to worry about being 8 hours connected to a machine
I have been on hemo since November 2022, I had my PD catheter placed in February this year. Due to life changing events, I have not been able use PD yet. I hope I can start soon.
Hemo is definitely a challenge for me, as the 4 hours in a hemo farm is unbearable at times.
Best of luck
I'm sorry to hear that things have been so hard for you. And that Hemo hasn't been a better experience. I'm hoping that when you are able to do PD that it will make things a little easier. Thanks for your comment!
Thank you so much for caring enough to share all of your information on CKD. I recently found out that I have stage three CKD. 😔
Peritonial dialysis is manageable. Just stick to your schedule. If you use a cycler, do it in the evening say 8pm, and by 6am you're done not unless you need to do a Stat Drain due to less output than expected. You can sleep and be done with it in the morning then you can go to work, etc. If your doctor ask you to do a "Dayfill", do it at noon and you're done, then continue what you're doing until it's time to do your next evening cycle. Peritonial Dialysis can be easily done alone as long as you're able but much better with a partner. Better than Hemodialysis where you sit down in the uncomfortable dialysis chair for 4 boring hours plus pain in your tailbone. Peritonial Dialysis is much preferred if you have a machine because after setup, all you have to do is sleep over it and you're done.
No one talks about drain pain for some of us.
I’m so grateful you’re feeling good with PD. I didn’t know it was a possibility until after they tried to drain me before filling me to flush my catheter.
I’m thinking of both options at this point
my drain isnt painful but i find i have to stat drain about 4 times everyday...is that normal?
Im going to give u my personal experience. The nephrologist told me that my moms Pd at home would be a piece of cake 🎂- that i would just need to connect her at night for 8 hrs , 7 days a week. So i trained & in the middle of training it felt like it was too much responsibility. Like me ordering my moms supplies, going once a month to get her blood drawn, going every 3 months to drop off moms ( liquid) that is inside drain bag. Then doing manual once a week which fir mom its 4 cycles meaning 8 hours stuck to a ivy pole. It was ridiculous so we are beyond happy shes in hemo she goes 3 x a week mon, wed & frid 8-12 . We finally feel normal oh & almost forgot to mention that the dialysate bags weight alot plus i had to use our 3 rd bedroom as a supply room. But im sure it works for others . 😊
Thanks for sharing your experience with PD and Hemo. I'm so happy you found something that works for both you and your Mother. I think it's important to hear both sides so that others can make the best decision on what will work for them. Thanks again for sharing.
Have you checked to see if your match for your mom?.
Thank you
So far I’ve only had the flushing with the PD but it was incredibly painful for me.
Some people say it might get better later on. One says it could be due to the surgery being just last week. Someone else says that drain pain will become my new normal and it’ll be there but I’ll get used to always being in pain.
I’m thinking of changing to hemo at home
I am CKD4 and I have met with the dialysis nurse at our local hospital. It's so hard to accept this is happening. I wanted to ask, is transplant something you will consider?
It is hard to accept! And there are so many layers to the different emotions you feel. It takes time to work through them all. Thanks for your comment. And yes, I'm on the transplant list.
I have a question. Do you always have to wear the extra chord attached to the catheter cord? Can I just attach it daily?
I am really worried, I am on a pill that can actually cause renal failure itself.
I too was on a medication that can cause renal failure. Just make sure to get your blood work done regularly to check on your kidney function.
Did you ever have pain during the flushing?
How comfortable are you sleeping through the night and managing all the catheters?
I have been very careful with my diet and exercise, so the cycler rarely wakes me with warnings. Otherwise it's fairly quiet. I wake up from time to time during a drain, which can uncomfortable, but I usually fall right back asleep.