NEW TO THIS SITE... HELP WITH CYCLER.....

[alaphair]

 ???HELLO, MY NAME IS ALAPHAIR. I HAVE FOCAL SEGMENTAL GLOMEROLUS STENOSIS. FSGS
THE CELLS IN MY KIDNEYS DIE.
I HAVE BEEN ON PD FOR A COUPLE OF WEEKS AND IT HAS BEEN HORRIBLE. THE PAIN, THE MANIPULATION....
I DONT KNOW IF I CAN LIVE LIKE THIS. AT THIS TIME IT IS TORTURE.
THE NURSED HAVENT OR WONT, ADJUST MY TIDAL SO I WANT HURT ALL NIGHT. PLEASE HELP ME IF YOU CAN.

[monrein]

Welcome to IHD.  I'm sorry that I have no advice or even suggestions for you since I've never done PD, but several people here do and I hope they'll see your post and respond.  It sounds really awful for you and as hard as dialysis is, I don't think it's normal to be in quite so much pain.  I hope we can help you to get your medical team to sort this out.  Torture is never a good thing.   

[cloud393]

Welcome!!  I was using a cycler for awhile & had a lot of problems so went to Hemo.  You shouldn't have alot of pain.  You can try changing positions and see if that helps.  Make sure your neph knows what's going on.  Your cath could be out of position.  Keep us posted & good luck.   

[Rerun]

Hello alaphair, and welcome to IHD.  I'm so sorry you are having such problems.  Maybe give it another few weeks and then if it does not get better ask to switch to Hemo.  I usually say PD is much better then Hemo but you should not be in such pain and miserable.  Hemo is not a walk in the park because you have diet and fluid restrictions (more than PD) but you are not in pain all night. 

Keep complaining to your nurse and doctor until you are heard.

You will find help on this site.

Rerun, Moderator

[okarol]

I don't have any experience with PD but I found this article http://www.nature.com/ki/journal/v53/n4/full/4490136a.html

[paris]

Welcome to IHD.  I am sure someone here can help you with your questions.   I am sorry you are having such a rough time. You shouldn't be in that much pain.  We are glad you joined the site and look forward to reading more of your posts.   




paris, Moderator

[peleroja]

Welcome to the group.  I am on PD and have a small amount of knowledge about manipulating my machine.  You can IM me or email me directly as my email is on my profile. 

[looneytunes]

Hello Alaphair and welcome to IHD!  This is a great site to cruise around in, ask questions and learn about kidney disease and dialysis.  My spouse was on PD for about 2 years and though he had some discomfort early on from the fluid volume and the sensations caused by the drain, it resolved with time.  To have real pain would concern me and you should talk with your neph about this.  There are some others on this forum who also had pain with PD, particularily with draining.  You might try a search on "PD pain" here on IHD.

Wishing you better days and looking forward to reading your posts.   

[lunadatura]

I am a PD patient and I love my cycler. I feel a ton better on PD that i did on hemo and i get to do it at night whislt I sleep. YOU SHOULD NOT BE IN SO MUCH PAIN!! There is something wrong - either with the position of your catheter or an infection - you need to be talking to your nephrologist - like NOW - page them.

[billybags]

I agree with looneytunes, you should not be getting a lot of pain, be persistent and get in touch with your nurse or neph, dont be put off. Pd is much better for you than hemo it is gentler.

[Bajanne]

WElcome to our community - a group of wonderful sharing and caring people.  I am sorry that you are going through this negative experience.  I don't know anything about it since I am on haemo, but I do feel your pain and my caring thoughts are with you.  Please follow the advice that you have been given.  Contact your neph!  Be your own advocate!  Take things into your hands!  And remember you now have your IHD family 





Bajanne, Moderator