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  • Nocturnal

    Hi, I am on the nocturnal program with my clinic. It is 8 hours 3 times a week from 8:00 pm to 5am. I sleep on a chair like bed with a cushion and my C-pap. It is comfortable and quiet most of the time. I do better because the run is slower and easier on my heart. I use the button-hole method. With nocturnal diaylisis I don't get nausea like I used to during the day.
    However, my fistula is damaged, my stints clotted and I no longer can have access with a catherter in my neck. Tomarrow I am getting a graft in my thigh. The vein is larger so I shouldn't clot as much. I've been on dialysis almost 3 years now.
    I am a volunteer teacher for an art school and that keeps me going. I also take classes.

  • #2
    I would say Welcome, but I see you have 20 posts already. I don't remember seeing you here before, so welcome from me anyway. There are a lot of supportive people here. You sound like you have been through a lot. I hope that the leg access will help you. There was someone on here recently who had a leg access and liked it.
    To the stars through difficulty!

    Comment


    • #3
      I'm new here. With nocturnal (or any dialysis, really) can you do all of them three days in a row so you can go away for a long weekend? I'm not yet on dialysis, but at stage 4 chronic kidney disease, and having a tough time visualizing how I will maintain my active lifestyle. I love camping in the summer and snowboarding in the winter - sometimes for three or four days at a time.

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      • #4
        With hemo you pretty much have to stick with the schedule. You can travel, but you have to arrange for dialysis where you are going. This can be done through your dialysis center's social worker. PD allows you to travel more easily because you can do your exchanges anywhere that is private and sanitary. I hope that answers your question.
        To the stars through difficulty!

        Comment


        • #5
          well...........

          I don't know how you think PD give's you more freedom, i have to do PD 5 time's aday every 4 hours from 6 am til 10 pm at night, and i don't find being at home to do a dialysis change every 4 hours much freedom....
          and a 45 pound box isn't something i want to carry around truthfully, because think about it i would have to have 7 boxes if i went for a week someplace... 45 x 7 hmmm alot of weight to hall around...
          gaylene the clinic is better if you can get monday wednesday frieday. then you have all week end free...... Deana

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          • #6
            nighttime PD

            I am new to PD so I haven't traveled yet but I know people who have gone away. Instead of having to haul around your bags, you can arrange to have your fluid and a machine to be delivered where you are going.

            Is ccpd at night an option for you?

            Right now I do one afternoon exchange (after school, I am a teacher) and then use the cycler at night. If you can do just the cycler at night (like shay), it will give you even more freedom. There are pro's and con's for both HD and PD.

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            • #7
              Don't forget about home hemo, guys. The NxStage system is portable and easy to transport. It allows you to be home with your family, travel, do water things like fishing, swimming, etc. that PD doesn't.
              "Within every adversity lies a slumbering possibility"
              Linda
              Tx: 7/28/2005
              St. Louis University Hospital

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              • #8
                leg fistulas

                For one reason or another we have about 15% of our M/W/F using thigh access. None of them have button holes, I have never asked why. It seems that the surgeon is key to the ease of use use by the placement of the fistula. Although I speak to every one every session I have never asked about the access. Seems to me to be private. I do talk about mine. Button hole upper arm 3 years ESRD, 2.5 + years fistula, 2 years button holes.
                I guess I'll ask one who is a close friend.
                May God have mercy on us all

                CK

                Idiopathic globular membranous nephritis 1999-2006
                Feb 2006 Dx about 1-2 yrs before dialysis. Dialysis start 6-2006
                Chest Cath 4 mos in center hemo dialysis
                Fistula, button holes, self stick days 07-09 in center hemo
                Graft nocturnal hemo 4Q09 to present

                Comment


                • #9
                  Re: Nocturnal

                  Last night was my first night, what a breeze, new, adjustable beds, lights out, no snorers, yet, woke up just before the 8 hours was expired.
                  can't say I feel much different, but maybe I do. I normally feel good except when cramps appear.
                  Big negative the amount of stuff you have to lug. Going to have to solve that. Until now I walked to dialysis, now I hire a moving van.
                  Waiting with bated breath for the first months KT/v.
                  2nd negative, Gotta get a job of some kind. Its not lunch yet and raining outside and I am bored out of my gourd. I had forgotten what a Monday looked like starting at 6 and ending whenever and all yours!
                  If you have to go, what a way to go.
                  May God have mercy on us all

                  CK

                  Idiopathic globular membranous nephritis 1999-2006
                  Feb 2006 Dx about 1-2 yrs before dialysis. Dialysis start 6-2006
                  Chest Cath 4 mos in center hemo dialysis
                  Fistula, button holes, self stick days 07-09 in center hemo
                  Graft nocturnal hemo 4Q09 to present

                  Comment


                  • #10
                    Re: Nocturnal

                    Cool Cicero! That is great that nocturnal worked out so well for you! So what are you going to do with this whole free day???

                    Comment


                    • #11
                      Re: Nocturnal

                      I am curious about the nocturnal dialysis....can it work if you are a restless sleeper or worse, sometimes don't sleep at all? Do you get something to help you sleep? Also, what if you need to use the bathroom at night? I am interested in other options and appreciate the fact doing this over a longer period of time is easier on one's body (especially the heart.) I'd like to consider other options besides hemo during the day.

                      Speaking of which, has anyone on the forum experienced home hemo WITHOUT a partner? Is that possible? I spoke with someone at DaVita who said it was possible if you have a neighbor on call. (My neighbors are right beside me...so close, I can hear them snore.)

                      I'd love to hear from others who know more about this. Thank you.

                      Comment


                      • #12
                        Re: Nocturnal

                        Well there are definitely some negatives: For something to do I have used Netflix for the last two years. Now I am cancelling their service. Get to the bed about 935PM and make up the bed with my bedclothes and foam mattress and pillow. This is one of the negatives also. You have to carry this back and forwards. Then I start the hoookup and bp procedure and about 950 i'm connected and in the horizotal position. By 1015 I'm asleep and no time for movies. Wake at 530-545 get disconnected and leave for home at 610 or so. I have so much junk I can no longer walk back and forth.
                        I get home and I am lost. For 3 years I have had an occupied M/W/F morning, now I have nothing. I feel lost, very lost. But it is excellent so far.
                        The first night the Dr offered sleeping pills and I turned them down, but there is no problem in getting them.
                        I'm hard of hearing so neither the alarms nor the snoring bother me. See handicaps have advantages.
                        We have just started and there are three of us. We double our numbers Sunday night if there are no problems Friday night.
                        There is also a difference, I don't know I've been dialyzed since I sleep through the whole process. I take it on faith that I m being taken care of. I do look at my sheet each morning to just look for exceptions in the number series for the different variables. Have to wait til the 1st on June to get my first new KT/v. It has been running 1.80-1.95 for the last year. I'm hoping for at least 2.5 for the first one.
                        Oh well I'll let you go and post again if I have something new.
                        May God have mercy on us all

                        CK

                        Idiopathic globular membranous nephritis 1999-2006
                        Feb 2006 Dx about 1-2 yrs before dialysis. Dialysis start 6-2006
                        Chest Cath 4 mos in center hemo dialysis
                        Fistula, button holes, self stick days 07-09 in center hemo
                        Graft nocturnal hemo 4Q09 to present

                        Comment


                        • #13
                          Re: Nocturnal

                          Thank you very much, Cicero. I really appreciate you sharing your experiences with this procedure. Kind regards, Fiona

                          Comment


                          • #14
                            Re: Nocturnal

                            At our center we have hospital beds that fold in several places so you can raise or lower your anatomy.
                            We also got an egg shell.crate "mattress' to put on top of the bed and I suppose this is for sanitation. Also a fitted bottom sheet, a set of cloth eye shields, ear plugs, towel and maybe some other items I forgot.
                            You are to supply top sheet if you want it. Pillow if you want it. At out facility there is no place to change, save the bath rooms and thus most people come dressed for bed. In fact it is all people. Some in outter wear some in US. I do come in my jammies, night shirt actually, may post a photo. As you can tell you have more to carry. I'm thinking about stealing a grocery card and it would still be a chore, but easier..:
                            If I think of more I'll include it. Our next 2 0r 3 start tonight so we'll get to see some new faces. Ken
                            May God have mercy on us all

                            CK

                            Idiopathic globular membranous nephritis 1999-2006
                            Feb 2006 Dx about 1-2 yrs before dialysis. Dialysis start 6-2006
                            Chest Cath 4 mos in center hemo dialysis
                            Fistula, button holes, self stick days 07-09 in center hemo
                            Graft nocturnal hemo 4Q09 to present

                            Comment


                            • #15
                              Re: Nocturnal

                              I have come up with one problem. Although I sleep from 10-6 the following day I am sleepy beyond belief. Can hardly hold my eyes open. They think it may be one of my pills, all habitual before noctornal, but as many as there are they could be quite right.
                              May God have mercy on us all

                              CK

                              Idiopathic globular membranous nephritis 1999-2006
                              Feb 2006 Dx about 1-2 yrs before dialysis. Dialysis start 6-2006
                              Chest Cath 4 mos in center hemo dialysis
                              Fistula, button holes, self stick days 07-09 in center hemo
                              Graft nocturnal hemo 4Q09 to present

                              Comment

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