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Nocturnal Pros and Cons

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  • dac0214
    replied
    My feeling about nocturnal: If you are the type of person who can sleep on a moving subway car, then it might work for you.

    Leave a comment:


  • Billman13
    replied
    Hi all,
    My name is Bill and I'm going to nocturnal dialysis for the time being, due to having a chest catheter. I'll be able to use my fistula in a few weeks... I hope.
    Anyway, I'm having trouble sleeping. My work is pretty cool about occasionally coming in late so I can sleep in. I go home and sleep for a few hours, post-session, before going in to work. Most times, those few hours are all the sleep I get.

    I can't sleep at the center, even with headphones and my hoodie pulled over my head to block the light. They do turn the lights down at 10:00, and aside from the machines, there's not a lot of noise.

    The big issue is that my legs get restless. I'm not sure if it's actually restless leg syndrome. It's not painful or severe, but enough to keep me awake. I can't seem to get comfortable, so I shift and move around a lot. My doctor gave me an anti-depressant to help me relax, but it's not enough. I can't take anything with diphedhydromine (Benadryl, Zzzquil, etc.) because it has the opposite effect on me. Any suggestions would be greatly appreciated.

    Leave a comment:


  • philligj
    replied
    I tried nocturnal, but the center I was at didn't make it very comfortable, the lights were never turned down low enough and there was constant noise, I could't sleep even if I wanted to I switched back to days and I'm much happier

    Leave a comment:


  • Palabb1
    replied
    Hi..my name is Pam. I have been doing nocturnal dialysis for 4 weeks now and at first I loved it. The staff is wonderful and care is more personalized since it is always same techs and nurses. The slower pull also is much easier on my body. Unfortunately, I now experience terrible leg cramps and Charley horses in my feet and legs that I dread the last 2 hrs of treatment. My dry weight has been adjusted twice but nothing helps. I think my body just doesn't like being in one position for 7 hours. Also, I don't sleep since my needles are close to my wrist, it is hard to get comfortable without setting off machine. I hate to switch back to days but I may have to do so soon. I'm also still working full-time. Most people in my center love nocturnal dialysis so don't let my opinion scare you.

    Leave a comment:


  • LeoPFlood
    replied
    I would love to see a program such as this with a program ending just around 6am. I feel that it would be great. I really want Hemo at my home, but I do not want to over my wife.

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  • dac0214
    replied
    Well, they could catheterise you....

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  • denisek15
    replied
    my main concern about nocturnal dialysis is being able to sleep- i still produce alot of urine and it is really tough holding for the hours that i am on regular hemodialysis, how would this work with nocturnal- the techs no dot seem to like being asked to unhook you if you have to go to the bathroom and i hold it until i feel my blader is about to explode at times- how would this work on nocturnal dialysis?

    Leave a comment:


  • Jillianj
    replied
    Originally posted by dgromley View Post
    Hi, My name is Dawn. I am a dialysis social worker and my clinic is going to be starting a nocturnal program soon. I was hoping to get some feedback from those of you that are involved in the program so I can share the information with my patients. Thanks!
    Hello Dawn, My name is Jillian and I started nocturnal dialysis about 8 months ago and love ❤ it. I am 36 yrs. old and was diagnosed with kidney disease at 6 1/2 months old. I have been on peritoneal dialysis, in-center hemo-dialysis, and have had 3 kidney transplants. Nocturnal has been a great blessing to me. Dialyzing for longer hours is gentler on the body therefore, when I wake up I don't have the washed-out feeling.
    When I went (many years) for regular day time in-center dialysis, I felt weak, tired, nauseous and overall like crap lol! My labs were horrible for example: Phosphorus was always over 10 which put me at risk for calcium deposits on my organs turning them to stone, potassium was high which was in danger of heart attack, my blood pressures were like 220/135 all the time with 4 Bp meds
    Since nocturnal I no longer take phosphorus binders and now my phosphorus is (2.2 best of whole clinic) I am on 1 blood pressure pill and pressures average about 160/88,
    Basically, for me it like a whole 360 change for the better. I can talk to fellow patients and staff, then read or watch tv, then I eat my dinner and then I receive benedryl to help me relax and sleep. I believe once people know about this, it can be a life saver. I am able to pretty soon start school or work or both. 😊 My energy level is amazing. I thank God everyday and hope that word gets out about this life saving treatment option.

    Leave a comment:


  • babygrlboricua
    replied
    Originally posted by dgromley View Post
    Hi, My name is Dawn. I am a dialysis social worker and my clinic is going to be starting a nocturnal program soon. I was hoping to get some feedback from those of you that are involved in the program so I can share the information with my patients. Thanks!
    Hi Dawn.. My name is Maria and I do nocturnal dialysis at the clinic in Celebration, Fl... To a lot of my companions in the clinic including myself the pros and cons are very easy... Pros: slower treatment, you sleep the whole time your there, have more time to work during the day or be with your family in the day time, live longer, can have more fluid removed.. The Cons: long hours on a chair, have to use headphones to watch tv so your tv noise doesn't bother your neighbor, sometimes the clinic runs out of Benadryl ( that's what we get to help us fall asleep).... And like I've said other times there are more pros than cons.... Hope this helps

    Leave a comment:


  • Kaiserwillie
    replied
    Originally posted by dgromley View Post
    Hi, My name is Dawn. I am a dialysis social worker and my clinic is going to be starting a nocturnal program soon. I was hoping to get some feedback from those of you that are involved in the program so I can share the information with my patients. Thanks!
    Hi Dawm,

    I have been on nocturnal for about 2 months and it has gone very well for me. I work and the schedule is perfect for me to keep working. The two things that I think you should take into account are that the nurse and tech should be experienced not new hires! That makes all the difference because it gives the patients confidence in their care. Second any nocturnal program should offer beds not 8 hrs in a chair! There are 8 patients currently on nocturnal at my center and 3 out the 8 can sleep pretty soundly but the rest it's hit or miss including me. My biggest issue is the chair. I'm 6'4" and sleeping in a reclined chair just is not comfortable for 8 hrs. Whats the point in offering nocturnal and your patients cant get the benefit of a goods night s sleep. When I get off the machine at 4 AM I go home and try to sleep until 10 or 11 AM and got to work around 12 or 1. If I were sleeping during treatment I could get to work on time and not have to alter my day! Thanks...

    Leave a comment:


  • stumpr54
    replied
    I have been performing nocturnal HHD since April 2013, initially as part of a 5 month NxStage Medical trial for FDA approval of the System1 Cycler for nocturnal HHD treatments. Participation in the study has qualified me to continue to perform nocturnal HHD treatments regardless of FDA approval. After completing the study I have followed a treatment schedule that typically includes 2 ea. nocturnal treatments of mostly 40L treatments and 3 ea. daily treatments of between 23 and 31.5L treatments. I determined that the PureFlow SL makes nearly 64 liters of dialysate with a 60L SAK and I use it all rather than send the extra down the sewer.

    I too, have experienced nice jump in Ktd/V values and have also been able to reduce my intake of phosphorus binders and loosen my dietary restrictions. The 6 to 9 hour nocturnal treatments at blood flow rates of under 300 ml/min are "kinder and gentler" than the 550 ml/min blood flow rates that I run for my short daily treatments. I work full time, and occassionally will put 11 hours in the office, making a week night treatment tough to get in. This in addtion to the periodic need to accommodate a week night activity make nocturnal the perfect solution. I do have to sleep in the day bed in my "dialysis room" rather than my own bed with my care partner/wife, but it is a small price to pay for the convenience and flexibility and therapeutic benefits of nocturnal hemodialysis.

    Leave a comment:


  • MadMarcus
    replied
    I started nocturnal 3 weeks ago. My kt/v was 1.1-1.3 when I was doing treatment on days. After 3 weeks on nocturnal my kt/v has almost doubled to 2.16. I know it still sounds low - but it's almost 100% better than it was. Trying to get used to the sleep schedule. I am starting to be able to work all day without fear of sleeping at my desk. Nurses in Nashua, NH are awesome!

    Leave a comment:


  • angieskidney
    replied
    Re: Nocturnal Pros and Cons

    Originally posted by cicero View Post
    Well folks its me again. I am now past my one year mark on Nocturnal in center dialysis. I go on at 915 normalized and get off 8 hours later. Get home about 545 and come in and make coffee and take the dog for a walk. Its a lovely sight as I dialize/sleep and dog walk in a night shirt and those cheap plaid pants that are for something. So far have not been arrested. Oddly enough I go back to the center on our walk.
    I have had a night or two when I cannot sleep but then I have them at home. Most days its, Mr. McGee if you don't get up I'm going to turn the bed over. I've call you 5 times and NO MORE! So then reluctantly I rouse and hold my sites, BUTTON HOLES of course, get up and weigh and pack my duffel and out the door.
    With my Pulmonary Hypertension, I'm not sure how much better I feel, but I know that it is not as bad as it was on 3x4.
    My labs are disappointing as I wanted my Kt/v to be 4.0 or better and its now in the 3.9x range for the last few months. I am not sure if I will ever make my goal but then I drink a little more than I used to, I eat a lot more and some of the things are not quite right. I rationalize that I am only cheating a little and I write them down. And then review at the end of the month. My fluid cheating is with my bounds of less than 20ccs a day, but my greens are too high and I have cut back on them. Have upped my fresh fish and cut back on my beef and one way or the other I'll make my 4.0.
    My PTH was up and down like the Dow Jones and was never in bounds and not predictable, no know reason. That was the 3x4 days. Now the PTH is mainly even and in bounds and is a notable event to the dietitian when it is out of bounds. Once I believe in about 14 months. Not bad. My phosphorous and potassium are steady and tend up or down but slowly as to be able to keep them in check. They are no longer spikes, just small waves.
    I do miss sleeping with my wife. That's a downer.
    I like to walk back and forth to Dialysis but due to the night time luggage I cannot.
    I see no other down side.
    To me its not a matter of life or death its a matter of quality of life. Its just better. My body knows it but does not know why, nor do I care. Its a lot like love, it is, what more can be said!
    Well enough and its now time for me to change into my sleeping duds and get ready for a good nights work.
    Thank you DaVita for this opportunity.
    Cicero

    .
    Thanks for sharing this! We hardly ever hear any nocturnal dialysis stories and I only know one person on it in center like you (Getlife of KidneySpace forums is on it in PA). It is always good to hear how well people do on nocturnal!

    Leave a comment:


  • cicero
    replied
    Re: Nocturnal Pros and Cons

    Well folks its me again. I am now past my one year mark on Nocturnal in center dialysis. I go on at 915 normalized and get off 8 hours later. Get home about 545 and come in and make coffee and take the dog for a walk. Its a lovely sight as I dialize/sleep and dog walk in a night shirt and those cheap plaid pants that are for something. So far have not been arrested. Oddly enough I go back to the center on our walk.
    I have had a night or two when I cannot sleep but then I have them at home. Most days its, Mr. McGee if you don't get up I'm going to turn the bed over. I've call you 5 times and NO MORE! So then reluctantly I rouse and hold my sites, BUTTON HOLES of course, get up and weigh and pack my duffel and out the door.
    With my Pulmonary Hypertension, I'm not sure how much better I feel, but I know that it is not as bad as it was on 3x4.
    My labs are disappointing as I wanted my Kt/v to be 4.0 or better and its now in the 3.9x range for the last few months. I am not sure if I will ever make my goal but then I drink a little more than I used to, I eat a lot more and some of the things are not quite right. I rationalize that I am only cheating a little and I write them down. And then review at the end of the month. My fluid cheating is with my bounds of less than 20ccs a day, but my greens are too high and I have cut back on them. Have upped my fresh fish and cut back on my beef and one way or the other I'll make my 4.0.
    My PTH was up and down like the Dow Jones and was never in bounds and not predictable, no know reason. That was the 3x4 days. Now the PTH is mainly even and in bounds and is a notable event to the dietitian when it is out of bounds. Once I believe in about 14 months. Not bad. My phosphorous and potassium are steady and tend up or down but slowly as to be able to keep them in check. They are no longer spikes, just small waves.
    I do miss sleeping with my wife. That's a downer.
    I like to walk back and forth to Dialysis but due to the night time luggage I cannot.
    I see no other down side.
    To me its not a matter of life or death its a matter of quality of life. Its just better. My body knows it but does not know why, nor do I care. Its a lot like love, it is, what more can be said!
    Well enough and its now time for me to change into my sleeping duds and get ready for a good nights work.
    Thank you DaVita for this opportunity.
    Cicero

    .

    Leave a comment:


  • Ottawagirl
    replied
    Re: Nocturnal Pros and Cons

    Oh,
    I guess I should also mention I was actually refused oxygen a couple times at my center and actually filed a complaint about that nurse.

    Even tho that was last year, it is still upsetting to know.

    I was actually in the hospital a few years ago for surgery and had breathing problems and no one checked up on me for quite a few hours then did nothing...till I ended up unconsctious in intensive care unable to breathe.

    I'd be afraid to fall asleep at the centre I'm at right now....

    Ah.
    I was also in the hospital before chrismas for lung problems and they were very insistent I needed blood pressure medication or I think a nurse told me it was something else and I unknowingly took it I'm pretty sure,
    but this one afternoon my blood pressure was very low and I came back to my room around 1pm after some apts,
    next thing I know it is 9pm and no one had checked up on me or brought me and food!

    maybe I just get all the horrible service who knows!

    Leave a comment:

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