Trouble sleeping on Nocturnal?

Okay I have been doing Nocturnal at home for nearly 3 months now (blood tests are good and haven’t needed fluid restrictions or much medication ). However I only do 3 nights and one short run in a week and want to build up to doing 4 or 5 but… I find trying to sleep for more than a couple of hours (without sleeping pills as I don’t want to become reliant on them ) is almost impossible. I don’t feel secure enough to sleep on my side and find my hand goes numb after a couple of hours.
It is NOT a restful nights sleep and I come off at around 5 in the morning ( its summer here ) and can’t get back to sleep because I then feel too alert and then either drag myself off to walk dog on beach or try to get some energy to face a days work teaching ( don’t think I will carry on the work bit next year )
Any suggestions I want to keep doing nocturnal because all the indicators look great but boy are they long nights on both me and the hubby!

How was your sleep on regular hemodialysis before you started doing it at home? I ask because it’s not uncommon for any dialysis patient to have poor sleep at night.

That being said, sleeping while hooked up to a dialysis machine does take some getting used to. I wouldn’t say it’s the same as sleeping normally. For me, most nights are just fine. I fall asleep and I don’t wake up unless there are alarms. I’ve gotten used to not moving about as much. I sometimes sleep for a while on my fistula arm side, but while it doesn’t seem to cause any pressure alarms, I find that my hand tends to go numb after about an hour. So, I mostly sleep on my other side with my fistula arm on top. I find that reasonably comfortable. I sometimes also sleep on my stomach with the bloodlines passing over me. That seems to work Ok too. And then sometimes I just lie on my back. It would be great to have one of those ultramatic beds!

But some nights there are alarms. That’s unavoidable. For instance, last night my machine started having arterial pressure alarms every half hour or so. Well, it’s the middle of the night and I’m not quite as sharp as I might be during the daytime, so it took me a few of these alarms to decide to try raising the needle a bit by stuffing a third 2x2 gauze under it. I guess that the angle of the arterial needle had flattened down a bit, and with another gauze under there, no more alarms. There are nights like that every once in a while, and there’s no denying that.

Let me put it this way… If I had to work every day, it might be a problem sometimes. It would be a problem anyway what with the supply deliveries, tech visits, etc. But since I don’t work, I can nap anytime I want to, and sometimes I do later in the day. The condition I have which causes the renal failure also causes eye inflammations every now and then. Since last month, I’ve been having this recurring problem and the eye specialist prescribed steroid drops for it. This worked for a while, but not without causing some temporay glaucoma. So, in addition to doing dialysis every night, plus being home on Monday for my concentrates delivery, clinic appointment last week and home for a technical problem related to colder winter water supply today, I’ve had to go to the Eye Institute at a local hospital on 4 separate days over the past 2 weeks. Each time I can pretty much kiss a whole half day goodbye. I have to go again tomorrow. Now, I know Beth and Dori and Bill and others like to tout going back to normal full-time work as an advantage of home hemo, but, based on my experience, I wonder what planet they live on - no offence intended to Beth, Dori or Bill :slight_smile:

It would take one heck of an understanding employer, and even so, I don’t think it would be possible to maintain that kind of pace indefinitely.

As I’ve mentioned on here before, daily nocturnal hemo is not a panacea that gives you your normal pre-dialysis life back. It’s just the Cadillac of dialysis treatments in terms of the gentleness on the heart and in terms of phosphorus. But it’s still kidney failure, it’s still dialysis, and as such, it’s not without some disadvantages or limitations. I used to sleep in very difficult situations on warships at sea, and also in the field with 10-ton trucks and main battle tanks rumbling by, not to mention generators going all night, so to me, this nocturnal hemo is a cinch in comparison :slight_smile:

I wonder if anyone does take a sedative. I guess if you have a reliable partner who will wake up, it’s Ok, but I would be afraid that I would not wake up to alarms when needed in a timely manner.

This problem is not unique to nocturnal hemo. I know a PD patient who uses a cycler, but he does it starting early in the evening so he can sleep better at night.

Thanks once again Pierre for your wise words!
I have always slept like a log before starting dialysis in August. I only did a few long runs in centre while training (during daytime ) and the sleepy thoughts didn’t enter my head!
Do you sleep with your head propped up on a couple of pillows? I have tried turning over and “sleeping” with needle arm resting on side but it feels a bit high.
Can see why you don’t have trouble sleeping after what you have been through!!! :o
Notice you have Glomerulo Neph as well. Is it Focal segmental? Are you on a transplant list? Can relate to having eye problems. I had a skin cancer on my lower eyelid removed a year ago (hazard with living out here) and had to have my upper eyelid sewn closed for 6 loooooong weeks. Made driving very interesting.
We are having a run of very hot days at present with 85% humidity and up to 40 degrees C. Need lots of swims to stay cool! ( Couldn’t do that so easily with PD )

You’re welcome, Beachy.

The chronic gn I had was eventually diagnosed as IgA nephropathy. Among kidney diseases, it’s a fairly common one. With the help of some friends, I run a foundation and email support group about it. In fact, there are a number of members from Australia.

Yes, I’m on the transplant list. In Canada, wait time starts accumulating on the day dialysis starts, so I have a little over 3 years under my belt. How does it work in Australia? I gather that in the US, it depends on when your nephrologist puts you on the waiting list, and so, it’s actually possible to accumulate years on the waiting list and even get a waiting list kidney before having actually started dialysis.

I do like to sleep propped up on two pillows, but not always. I find that I can vary my fistula arm position quite a bit. I can bend my arm, etc. At first I considered having someone strap me down on the bed like Frankenstein’s monster, but this has proven not to be necessary :slight_smile:

We’re the opposite of you. We’re having a stretch of unseasonably-cold weather for early December, around -10 Celsius. Good weather for vegetating in front of TV with some old movies.

I’ve done two nocturnal studies. One every other day and one every day (actually six nights a week). During the every other day study I had a hard time getting a good night sleep. I felt like when I didn’t sleep well on dialysis I would sleep soundly the following night then not sleep well the next night when I was back on dialysis. When I did the every night study I found by the end of the study I was sleeping pretty good – I was finally so tired I slept during treatment and as a result I found myself getting use to sleeping while dialyzing.

So my idea would be to limit your sleep on non-dialysis days. It sounds a bit counter-intuitive but maybe by being more tired for a few days in a row you could get your body use to the idea of sleeping while dialyzing and be less tired in the future. Just a thought.

Beachy are you up in Cairns? I really enjoyed the 5 weeks I got to spend in Cairns in 1999 – my dog (a black tri Australian Shepherd) is named Cairny.

Thanks again Pierre and Bill
Interesting advice about trying to limit sleep on off nights! That is thinking outside the square!! Will give it a try. Just have to get through 2 more weeks of teaching and then am going to have a long break until I get this sorted.

Pierre, in Aus the transplant list dates from when dialysis starts and can take from around 3 to 7 years depending which state you live in. I want to give it a try only with FSGS there is a likelihood that disease will reoccur. I have already been on immunosuppressants for a couple of years to keep me off dialysis longer (they worked but ended up with some lovely skin cancers and 1 melanoma- can’t blame it all on that though because I have had virtually 50 years of sunshine! ) I live in NSW where the wait is 5-7 years as they, could move to Queensland where wait is around 3( Cairns might work for me!)

In answer to your question Bill, we live at a little village called Pottsville Beach just South of the Qld border and about a 5 hour flight from Cairns. We have a similar climate, beautiful tropical scenery and are just North of Byron Bay another tourist mecca. Here is a local website to wet your appetite. Come on over, you would be most welcome to stay with us and our Ridgeback Nelson anytime! Nearest dialysis centre open for visitors is John Flynn Hospital at Tugun, (very good I am told) 8)

Having talked yesterday about the possible disadvantages of nocturnal hemo vis sleeping, last night was great. Slept like a baby from about 15 minutes after starting tx until the machine rang out in the morning. I swear that when I heard and woke up to the alarm, my first thought was “*&@#&%”. I figured it was like 2 or 3 am. But then I realized it was the distinctive sound of the end of tx alarm, and it was 6:30am. Time to get up.

So, while I like to present both the advantages and disadvantages, you really have to try it for yourself to see how it goes for you.

I think having a little dog like a Chihuahua in the house would be very beneficial. For example, I have 2 of them and they’re so smart and house trained…I have never even trained them for the phone! Basicly, my ears are not too good but these small dogs let me know when the phone rings… :? …they also let know when the doorbell rings…

Hopw would something like this work for Nocturnal? Prolly good! They’ll start yelping when there’s danger coming or anything like that! They’ll wake you up right away… :roll:

Is a little mini dachshund Ok :slight_smile:

I have one of those. He actually does try to tell me when something is wrong. The only problem is he likes to get into my bloodlines, so I have to watch that.

Haha, I thought you had one to…I have a gut feeling that only those of us with pets can sleep quite well while dialyzing…

I have a parrot as well but she keeps calling my name over and over…that’s all… :lol:

“Haha, I thought you had one to…I have a gut feeling that only those of us with pets can sleep quite well while dialyzing…”

Not entirely true Gus… I have a very large Rhodesian Ridgeback called Nelson. When he sees I am setting up Freni he won’t come near my side of the bed. Gives me an odd look and goes around to hubbys side, plonks himself down with a groan and doesn’t wake up until he is encouraged out to his bed with a biscuit!

Doesn’t help me to sleep at all though :wink:

:lol: :lol: …

Mine do the same, well almost…they go to the corner on a chair and stay very still and quiet but with a very sad look in their faces and sometimes tears…they keep staring at me when I am preparing myself and inserting needles…but once am done they jump up with excitement and jump to the side of my feet on the recliner till am done…

I kinda have these two small dogs spoiled I guess… :oops:

But I think its true that having pets lower anxiety…it may be true for dialysis patients just as its true for heart patients… :stuck_out_tongue:

Pets can lower anxiety for just about anyone. I am not a heart patient or a dialysis patient and I find when I feel like things are going wrong in my life a good talk with the dog always makes me feel better.

Kinda funny, but true! Research shows it…also kinda weird how we really love our pets…

so basicly I think those of us on dialysis at home that have a pet have lower stress levels and get used to it quicker than those who don’t have a pet…

P.S. Sadly, I recently read on CNN about a security camera capturing footage of some women stealing a small dog from a pet shop by placing the small dog in the purse after cuddling it…

I have been thinking back over the last couple of months about how much the support of people on this forum has helped me get through these initial very difficult times. Your words stayed with me as I struggled to get on top of Nocturnal.

But hey, now I wouldn’t do it any other way. The body has adjusted to a level of discomfort and I don’t get up feeling exhausted from lack of sleep.

I used to read Pierre’s post and think I could never get as relaxed as he was but coming up to nearly 6 months on Nocturnal and we are nearly ready to have a few days break and a couple of days of Holiday dialysis. I have booked in to a center about 4 hours drive North of here so if something goes wrong I can always come home.

Just wanted to say thanks and to assure any other new people contemplating Nocturnal that you do get to that light at the end of the tunnel!
Cheers 8)

It is great the way those on this board “pass it on”. Hope your vacation is a time of refreshing, Beachy-you’ve earned it :smiley:


My dog does dialysis with me on the bed every night. I keep him off (but not out of the room necessarily) until I’m on and running. The only precaution I take is to not let him sleep too close to where my bloodlines are, but he seems to understand. No matter where he is, he comes in as soon as I’m on. The only thing he hasn’t quite mastered is the concept of my off-night. At about the usual time, he tries to get me to go into the bedroom so we can start “our” dialysis :slight_smile:

I’m sure my husband’s dog will be the same way. Even though she is 11 years old she’ll learn quickly. We had to quit obviously spelling around her because she always figures out what the word means! We have to do all spelling it in a normal conversational tone or her ears perk up and she studies us trying to figure out what we’re up to.

Which brings me to the off topic thought which has been bothering me. At age 63 this the first dog he has ever bonded to. This big burly 260 pound “Mr Macho” just melts over this fluffy little “foo foo” dog - a shih tzu named Bridgette. For the last six years they have been inseparable. We have already decide that when she dies she will be cremated, and her ashes put in his caket when he dies! Under the best of circumstances her death will be a big blow for him. She’s currently very healthy but I worry about how her death is going to affect him when he’s already dealing w/ so much. I would guess emotional events make any health problem more of a concern but anyone know if there is something I need to watch for as far as dialysis is concerned?

:lol: :lol: Bridgette tells my husband when it’s “bedtime” and if he ignores the stares and pacing back and forth to the bedrom she finally just barks at him until he gets up and goes to bed. TV on is OK, laptop is OK but he has to be physically in the bed!